A Mom's Journey

A Love Letter to Duchenne Mothers

2011-11-01T17:58:00.001-04:00

Dear Duchenne Moms,

There isn’t a day that goes by when thoughts of you don’t enter my mind. I write lyrics and tunes in literary melodies, but no words could describe the gratitude I have for you, your unconditional cares and affection. It moves me with heartache every time I think of your lifelong sacrifices, but in you is where my sanctuary lies, knowing that I’m loved, always.

Between the hardships and despair, the smiles and laughter still linger. They continue seeping through, like the radiance of sunlight; its warmth from within. In a walk that was never mine, you’ve taken my hand and challenges with it, making them ours without hesitation.

Through your enduring spirit of strength and courage, I’ve learned that sometimes, we have to stop crying and live. Despite physical limitations, you refuse to let me feel sorry for myself and have the luxury of self-pity. Instead, you encourage me with expectations that include neither condescension nor partiality. With only dignity, grace, and a tremendous amount of gentleness and patience, you’ve given me a newfound respect for women that will stay with me forever.

Although I’m one to shatter dreams when you lay eyes upon my frail abode, I understand your fear of the future to come. This is reality, and as I fall apart to the notions of breaking your heart, I’ll stand tall, even while the world crumbles in my sight, for you’ve taught me well. I live for myself and am not afraid, because hope remains with me.

And I’m sorry I can’t relieve your burdens, for not being able to prove my love. I’m sorry for a lot of things. I hope you know that words for me often speak louder than actions. I might never be able to reach out and hug you, but if I could, I would… do anything for you. You’ve given your life to me and all of mine is yours.

But this isn’t about apologies. There’s nothing to be ashamed of when we’re in this journey together. No obstacle has existed in vain. It isn’t about thank yous either when you’ve asked none from me in return. I only hope that I’ve become the man you envisioned me to be, both in my heart and soul.

Dear Duchenne Moms, I nevertheless thank you for loving me throughout the years of my life. It’s nearly impossible for another to love me, but yours is my inspiration to understand that if our roles were reversed, I’d love and take care of her, just as you did me. Perhaps in this, you may remember that hope rests upon my foundation in you, and because of you, I know what love really means.

Remember me, for who I am, for you’re my mother, and I’m your son. I always will be.

With hope,
Your Duchenne Son

Written by Ricky Tsang

With tears streaming down my face, you are a constant reminder that there IS hope, you are a constant motivation to keep fighting this fight for you and all of our sons and daughters even when we feel like we've been kicked in the gut. You, my friend, are an inspiration to us all and any mom (or dad) in any walk of life would be proud to call you their son. Thank you from the heart!

Campaigning to Save Lives

2011-10-13T18:58:00.001-04:00

God is testing my patience here...my original post got deleted when asked to publish it. LOL...so here I go again with this old fart brain! :)

As a parent, we do what we can to provide comfort for our children. It is what we want for them Its a fact that it is due to loving and caring for them. Right?

Do we really care for our children? Do we deserve to? or better yet, does our children deserve it?

So what if your child has a life threatening illness? Needs as much as they can for not only comfort but the standard needs of life. What if you were told that most likely YOUR child may die by a certain age? Tell me, will you let that happen, or will you fight for their lives? Will you let the disease win or will your child's life win?

Oh I know that trust in God, have faith. Trust me, I do trust in Him. And I pray everyday too! But often God tells you that it is your turn to do something. And with that, He richly blesses you. Yes? Do you believe in this too?

As a parent I do what I can to fight for Timothy. I do advocate alot for him. Dealing with government agencies, medical, educational...so much. Simply because he deserves it...& it is his rights too. But in most cases, the goverment/medical agencies can not help. There is no funding for it. So that means I have to "work" for it...find other resources to help make it work...for Timothy.

But sadly most of his family does not help...or even visit him. Some have, but not all. It is sad that I have found most of them are still running from him. I laugh when they use me as their excuse...but really? You gonna let your loveone die or go without because you may not like another person? Hello people...its NOT me your fighting for, its Timothy!! Not even his father fights for him. That is just sad. How can you not want to fight for your child's life? how can you not want a relationship with them? STOP using me as an excuse to connect with Tim.

Timothy does not bite. Like you, he has emotion feelings. He has decent conversations, he likes to hear a good joke and likes to tell a good joke. He is intelligent, smart, whitty, funny. And when he could he loved to draw, write and he was a good poem writer. He has done no harm to anyone else...but yet, many run from him...not wanting to be there for him or help him when he needs it. Why? What are they afraid of?

Since my stroke, my physical limitations has made it difficult to do that one -on-one care for Tim like I use to do. I no longer can lift him. My balance is off and I don't have the ability anymore to push a 400lb power wheel chair onto a portable alumnum ramp into the van. I can't lift him from his his wheelchair to the van seat or even onto his bed. So there is a great need for medical equipment.

Tim does have a SPECIAL NEEDS TRUST ACCOUNT. Funds that go in there helps pays for his medical supplies, utilites and other needs. IF there is enough funding, equipment he will be needing. He is legally allowed to have this trust account where it will not affect his SSI or Medicaid.

We have started a Campaign 400 fundraising. We are hoping (and praying) that his 400 family and friends (and their friends) will be willing to contribue a minimum of $25 to his SPECIAL NEEDS TRUST ACCOUNT so that he can buy these medical equipments.

Will you join us on this adventure as we campaign to help Timothy. If you would like to explore about this adventure, please stop by his website at: www.muscles4Timothy.org and make a contribution.

We thank you for your support.

Professionalism of Nursing Care

2011-09-25T16:02:00.001-04:00

So last night I had an interesting experience. So maybe this might give you the tip of the icing:

OHHHH Lord- please hear my prayers. Please heal me quickly from these broken bones and hyperactive nerves so that I can have better care of my son since some of our nurses can't bear to pull themselves away from the cell phone and/or love to sleep on the job! I just don't get it Lord- they have these LPN lisc and make good money. They make 5x's more then I do but yet they love to chat on the phone, sleep and steal my food that now I have to hide my food and now I have to hide medical supplies since that is getting stolen too. I fear what else is being taken from us. But waiting for a big screw up to prove my point and hope my son's life is not in any jeopodary from it. I'm not negotiating here Lord- but I think you got my point! Amen!

Here is a lesson for many nurses- especially if you work at night:

I have an issue with one of our best nurses. She likes to sleep on the job. And although she has beed talked to and have been written up for it, it seems it did not resolve the issue. And what happened last night was not the first time I have caught her sleeping on the job either. She slept over 3 hours last night without a blink of an eye how this may affect her career.

There were several times Timothy's ventilator went off, she did not respond to this. Tim called on her several times, she did not respond to this. So when I was suppose to be sleeping, I was up aiding Tim's need because this nurse was to busy sleeping to care for him, hence his care was in jeopardy. I did a fire drill. yep! and guess what? Even that didn't work. I try to get the fire alarm using my toaster as that usually get the fire alarms off, but that didn't work. Then stupid me thought using a candle. like duh! So I used a paper towel. It went off. she jumped, gave Tim a sip of water, sat back down and she was out...again! She slept until day nurse woke her up at 7:03am this morning.

She is a good nurse- maybe she needs to do day shifts instead of night shifts!

I did contact the agency and sent them some photos and they are dealing with the issue. I love the agency- they are wonderful people...and actually the nurse is a good nurse too...however some professionilism is just lacking on some of the nurses and I think that is their character not the agency issue. If you know what I mean?!

I have another nurse who seems to have her cell phone stuck to her face/ear. Its like she can't live without that damn phone. However, it does jeopardize my son's care. I even put up signs- no cell phones on or in house and I cartch her on that damn phone. And who in the hell is she talking to at 3am? really? Really? REALLY?

Folks- when you are at work- you need to think of your clients-patience. They are your priority. Their care is your priority...not your sleep, not your cell phone. When you step through that door, you need to choose what is more important to you, your career or your personal life. And if you are a lisence nurse- this is your career!! Damn people. Its sad. Choose.

Remembering Academy (high school) days

2011-09-09T13:20:00.003-04:00

Do you remember your High School (Academy) days? is it one to remember by? How about the wonderful memories of friends made, not just classmates, but how about even the staff? To many, we have those long term memories, while others choose not to remember those days, that time.

Denise, Shally & Sherri in 1980

In my junior year I became close friends with three wonderful young ladies: Denise, Shally and Sherri. Seems like that year we did alot of things together as friends. We did alot funny things too. But by my senior year, Denise had gone back to California and Shally chose to continue dating her love who was still a Mennonite, and Sherri had remained as a student along with myself.

Of course, over the years, we all went our separate ways and of course, many of us matured-changed.
Of course Denise married had kids, later Shally married and started to have her own kids but by now she was again a Mennonite. Her whole life style changed. The last time I saw Shally was a newlywed and had a new born baby girl. She was living in a home her husband build and there was NO power. Sherri graduated and returned to Colorado and, I was now living in Maryland enjoying my single young life.

Denise

I could not understand how people can live with no power. Maybe I was just "spoiled". Maybe I just didn't understand their beliefs and lifestyle. I don't know. However, over the last 30 years or more...still in touch with Denise (now a grandmother) and Sherri (now divoiced, but has 2 kids) and yes occassionally keeping in touch with Shally who now has over 7 kids and is now a grandmother herself. There had been times I wish we should had made a bet who would marry more than once, who would have the most kids, who would be the successful and who would just live a long lonely life. Well Denise would had won the most marriages (LOL) and Shally would had won to have the most kids.

Sherri

All of our lives have changed-big time. I miss my Academy friends and although we all don't talk much we still keep in contact by email and by phone. But now I want to go up and visit Shally. I have seen and talk to Denise and Sherri all the time. In fact in the mid-late 80's I lived with Sherri for a bit in Colorado. That was challenging. But I saw her as a whole different person- all gown up and just enjoying life. She, of course is a very beautiful person now and dating a new guy (also good looking). Denise, of course, (giggling) has married for the 3rd or 4th time and lives and works in Nevada with her new husband and mother.

My next challenge is to go out of my own box and take the challenge to go visit Shally in Pennsylvania. I may take Sherri and Denise with me too. I have to talk to them about it. See what they say. But I think it will be a learning, challengling, and maybe even recap of our younger days. It is my new/next goal for the next year. Maybe Denise and Sherri can't join, that is ok. I rather they join me. But I look forward to this.

(giggling) maybe we can "kidnap" Shally and take her out to a day of fun, shopping, eating out, etc..etc...

I'm sorry I don't have a recnt photo of Shally...as they don't allow their pictures to be taken due to their religious beliefs. I do have one of her sister and brother & parents, but that is not the exact same thing.

There are alot of memories - good memories to recap with friends. The camping trip, the teasing, the singing, the laughing, Christmas, Thanksgiving, the farm, the bakery and so much more.

That is my goal. That is my next challenge. I guess I better recoup from this stroke first to accomplish that goal..

Coach to Cure Muscular Dystrophy

2011-09-01T15:23:00.002-04:00

Colleges and Universities all over the United States are participating

Raising funds for Muscular Dystrophy on September 24

Use your cell phone * dial 90999 * write CURE * donate $5

http://www.parentprojectmd.org/goto/TimBird

Thank you for your Support!

I am a Mother....

2011-07-20T13:37:00.003-04:00

I am a mother.

I am a mother of one wonderful son.

He is good looking, smart, funny, sensitive, compassionate.....& dying.

You may be a mother of children. Most likely grown and married...but mostly healthy and living on their own. So as a parent with healthy children, you may not know what it is like to watch your child deteriote from a disease that has taken most boys before they are twenty years old.   Its kind of scary. No. sorry... it is scarry. Very scary.

It is scary because you feel you can't do anything to save them. You want to SAVE them. You need to save them from this horrible disease.

I am a mother of a boy dying from an incurable disease. Duchenne Muscular Dystrophy.

As a mother, I am fighting for my son's LIFE because no one else will.   His uncles, aunts, grandparents, father, cousins and even life time friends will not help save his life. I don't know why? Maybe they just don't care the same way as his mother will.   But you will think at least his father will, but even if doesn't make an effort to save his son. Maybe he just doesn't care, I don't know.

As a parent, wouldn't you make some kind of an effort to save your child's life? Wouldn't you care enough to want to save him/her?     Serious. Think about it. A doctor just told you that your child may not live to twenty years old and there is no cure right now.

What would you do? What are you going to do to change that statement?   Are you going to just sit there or are you going to FIGHT??!! Are you going to fight? and how long are you willing to fight for? How strong is your love for your child...for this child?

Where is your heart today? What are you going to do today to save a life? Are you with me in helping Research find a cure to save lives? Are you willing to help make that difference?

You can help right now and make a donation to PARENT PROJECT MUSCULAR DYSTROPHY (PPMD)- a non-profit organization who is closly working with CDC, NIH, Congress and many Researchers.

or you can help us with the purchase from Amazon.com RECIPES FOR OUR SON'S- a DMD family put together a wonderful cookbook with nearly 600 delicious recipe and all funds go to PPMD.

or/and you can help us with the purchase of a wonderful book writtren recently by parents of boys with Duchenne Muscular Dystrophy - SAVING OUR SON'S-ONE STORY AT A TIME.

Are you a mother today? Are you a mother fighting to save a son's life?

Recipes for Our Son's

2011-06-28T16:19:00.002-04:00

Hello Everyone!!

I have some exciting news...although we are still waiting for the launch of our book, Saving our Son's, One Story at a Time, we are launching a new cookbook that will benefit PARENT PROJECT MUSCULAR DYSTROPHY. It is not our vegetarian cookbook.

Today we are launching Recipes for Our Sons. The books have been bundled with a $5 Amazon gift card

and are now available at:
http://www.amazon.com/dp/B0051B117Y/ref=as_li_tf_til?tag=pareprojmuscd-20&camp=14573&creative=327641&linkCode=as1&creativeASIN=B0051B117Y&adid=0841MNY987KXV2PFKDZK&

(don't forget to include the "&" at end of link)
The cookbook was compiled by family and friends whose boys are affected by Duchene Muscular Dystrophy.

Please help support PPMD by purchasing this cookbook today!

July 5: I just got my cookbook in the mail and was very pleased with it and was shock how thick and big the cookbook was and it surely had alot of delicious recipes in it. Well worth having!
Thank you for your support!

Raise Funds for Wheel chair lift

2011-06-07T23:38:00.000-04:00

Hi Everyone!!

Realizing now with my stroke of my limitations. Now we really need to raise funds for a wheel lift to add on to the van. So I did some research and figured the cost. They are expensive but not as much as I thought. We need to raise a minimum of $2,000 to purchase a wheel lift for Timothy Bird and you can help us by purchasing this book, "Saving our Son's One Story at a time" that has Tim's story/picture in it with many of his friends who is battling DMD.

Help us today by sharing your support and by sharing this link/email with your family and friends!!
http://www.mistyvanderweele.com/books/sosorderpg01/?ap_id=deebird

Thank-you!

Good bye Oprah!

2011-05-25T17:21:00.003-04:00

Hate to say it...but today was the very last show of Oprah Winffrey. It was a very eduational, learning but yet very loving message to her friends (audience). This woman amazes me. She is surely a gift from God. I have always said that God sends us all here for a reason-a purpose...whatever it may be we are put here on earth from God as a gift to spread His love. We all are talented and gifted in so many different ways and God knows how to use all that in all of us.   It has been a sad day to see her and her staff leave ...but hopefully her radio and magazine will continue on to educate and spread the message of love, peace, hope and forgiveness.

Its true though. It is my belief that God gives us gifts and it is up to us how to use those gifts. We can either uphold Him and shae His grace or we can abuse it and gain absolutely nothing.

I'm sure you can go back on Oprah.com and listen to her love message to you and embrace it that no only was she God's gift to us but so was her staff, her show and her many guests.

She was right, someone who wanted to be a teacher...we were her classroom-learning...she was our teacher- teaching. But using our life experiences-the lessons from it as our lesson books.

well, I'm in pain and my fingers hurt. never realize having a stroke can be so painfull.

Thank you Oprah! We will miss you! We hope to learn more from you still by your other resources of media, including OWN.

The Red thing wih those Black Spots

2011-05-20T21:56:00.000-04:00

so today i learned a little more about my grandfather Miguel. Come to find out he came from a large family-he was 1 of 9 and what I hear there were 7 girls and 2 boys. he was next to the youngest. he had a niece who also became a nun. many of his sisters and brothert never married nor had children.

OT dischrged me today leaving me with a lot of exercises for my left side.

I think I have sleep apenea...seems i've been having lots of anixiey/panic attacks in my sleep. noticed it mostly since my stroke. so i 'm gonna ask for a sleep study.

ok..although i took my pain pills tonight and took a hot shower, right now I'm in a lot of pain so I'm hitting the sack.

tomarrow is the watermelen festival...i want to go but want/need someone to go with me. I want my watermelon! yummy!

later!

Saving Our Son's...one story at a time!

2011-05-11T21:45:00.000-04:00

hey all!! just wanted you to know that we are having a book publish that has Tim's story and photo in it. Its about Awareness and education on Muscular Dystrophy.
Hear the dynamic stories of 33 mom's talk about their amazing son's, including Timothy and his friends as they share their experience about their disease and life.

You can pre-order your book today!

http://www.mistyvanderweele.com/sosorderpg01/?ap_id=deebird

Second Guesses

2011-04-25T21:59:00.000-04:00

so i"m trying to type with my left hand... stimulating it...forcing it to move.

as of friday, after the mri, i went for the eeg...the doctors came in and rule out migraine and ms. it was a stroke. not a major one but enough for some minor damage. but i passed their stroke tests... by sunday some of the syptoms had worsened that my oxygen level stats had dropped...had to be on oxygen.

today i feel a little better...had a cat scan done for my lungs to rule out blood clots. originally they were going to send me to rehab but now thhey r going to send me home with nursing care with pt and ot.

i actually made my own bed tonight..lol. but needed pain pills afterwards...lol...crazy ole' me.

so the doc and i talked and we came to the conclusion this was actually my 2nd stroke. 1st one was when i was in hospital after my surgery but the 3 doctors i complained about this to just swept it under the carpet and blamed "anxiety" for it without testing first. this all could had been prevented if they would had tested for it...i bet they didnt even document it. idiots! talk about 2nd guesses.

anyways...i'm feeling sleepy now. u would had never known how many times i had to correct my typos here. lol

more later

life at its best paralysis

2011-04-22T13:04:00.002-04:00

A stroke. A focal mini stroke. I guess God is really tryingng to tell me something i dont know,

so this is what really happened on wednesday night, did not have an unusual day. was on the phone with my friend about rebuilding tims computer.. parts and all. (sorry writing with 1 hand so bear with me) nancy, tims nurse had just left...when i started hearing ringing in my ears and my head felt different so without being rude to roy we mange tofind way to get off phone. that is when my lips and left arm went numb,,,then felt nasious too. finally i had to call 911 but we had to figure out what to do with Timothy.

it was then decided to take tim to er with me so they did but he was not addmitted as patient so they could not touch him....what? he needs to be suctioned and pee and drink.... how am i suppose to care for him in my condition....before i knew it they were rushing me to cat scan to rule out a stroke.

because maxim was to lazy and stupid to help with nurses the er decided to admit tim under observation thank god for the social worker who helped. they admitted me and by morning Tim was sent home by ambulance to the 7am nurse.

my condition has worsened. what started as a come n go numbness on my lips and left arm is now 100% of my left side is all numb tingling burning feeling. my left side of face eye, part of nose, part of lips, neck shoulder arms hand fingers back abdominal legs feet toes and thos other unusal parts...hehehehe now i barely can walk or hold onto stuff with left hand. feels like iv been injected with novacain dozens of times all over.

im at shands bored i do get physical therapy but dying for a shower!

lol dying for chicken nuggets. lunch is here so need to go will add more later

The joy of Laughter

2011-04-18T07:22:00.001-04:00

Most nights, when trying to sleep I can hear my son, Tim, laughing. Roaring laughing. Not just little giggles but his laughter is loud.   He really enjoys watching his Youtube shows and his animie plus a few extras. But its like no matter what he is watching, it is making him laugh. Although sometimes I'm watching what he is watching and I'm just clueless to what he is laughing about.

Timothy really enjoys laughing.   IT is one of his biggest gigs and reasons to fight for his life and stay alive. He, as handicap as he is, is really enjoying his life as it is.

As they say...."laughter is the best medicine"    It might a wonder that maybe that is why he is having a wonderful fulfilling life. Laughter!

Sure the ventilator is helping him breath, the g-tube is feeding him and his medications are doing their job...but what about his loud roaring laugh that you hear for 8-12 hours a day when he is not sleeping. I do keep the baby monitor on in my room, so while I'm (trying) to sleep in my room, I can still hear him laugh.

Tim is enjoying life and I think his laughter is truely his medicine.

It's all Good...I think!

2011-04-15T18:10:00.000-04:00

I have not been well lately...still having a terrible time eating. This surgery I think did almost more damange than good.

But its just not that....there so many things adding up that is just physically, mentally, emotinally getting to me. First it was the Child Support...Florida loosing my money finding it then returning it to Maryland and slowly getting to come back. Can you believe how long I had to wait for that?   Then the ugly stupid Gov. Rick Scott who needs to be shot!! God, he really makes me sick! Now the cancellation of ABC daytime soaps are being cancelled.   Ohhhh I can't forget that Medcaid has me on the share of cost-medical needy program where they expect me to pay out $734 in medical expenses out of my pocket when my income is only $934 a month. IF I pay our 734 how am I suppose to pay my rent? my utilities? my food? my van?

So I had to cancel my physical therapy appointment cuz they wanted me to pay $35 today. Well I don't even have $20 in my account. So I had to also cancel my pain manament and arthritis appointment cuz I don't have money for that either. I'm so damn broke!   I hate it!   hate it! (did I say I hate it!)

I just can't beleive that ABC Brian Frons stoops so low to cancell All My Children and One Life to Live and claims that we don't want soaps but reality show. What does that man know about what we want. Who says we don't want soaps?? Did he hear that from us??? NO!!!! he is such a freaking liar!!    LOL one of the former OLTL soaps stars says everything dies that he tries to run, its like he is a serial killer. Then I heard he is in some security protection cuz he fears his life cuz of this cancellation. R O F L M A O! OMG such drama!    Is he serious?   IT must be cuz he knows that he has lied to us and had to run before caught with the truth.   dumbass! idiot!    must be a gop republican....a corrupted one at that. lol

Anyhow...so now I'm eating baby food and smoothies anything that is soft and easy to eat cuz everytime I eat...lol...feels like I swallowed a bowling ball. Hurts so bad, then my back hurts. I still can't sit long cuz then I swell, hurt and so I try to lay down and rest....and I can't sleep cuz of the pain so I try to sleep with out the pain pill and only when I know the pain is a 10 will I really take a pain pill.    I've been like...Grin & bare it!   Thank god for the HOT showers.

I did go to CJ's yesterday and laid in her jacquizzi tub. That helped.

So now with maxim, Tim's nurses. No nurses for tomarrow, Saturday night and for Sunday. Can you believe for 3 shifts straight I have no nurses and I"m not suppose to lift Tim!!   So I wonder if the cute firefighters will come over....Woooohooooo! chunky chunky hehehehehhehehe

Drinks up...another smoothie for me! later folks have a good weekend!   happy happy happy happy

FLORIDA BOYCOTTING RICK SCOTT'S SOLANTIC CLINICS STATEWIDE

2011-04-09T12:05:00.001-04:00

If you live in Florida and you can't stand Rick Scott and all the garbage he has pulled over us...we will be
boycotting his Solantic Clinics on APRIL 30, SATURDAY STATE WIDE at all his clinics from 12 (noon) to 6pm.

You can bring whatever state legislatives issues you have with you too to protest along the boycotting..

Rick Scott seems to think that because he transferred the ownership to his wife that he is not earning money from it. The problem is: he is still married to her and it is still part of thier assets and in fact he is still earning money from it.   He thought he call pull a fast one on us.   Guess what- we are not stupid!

In Gainesville, we will be meeting at the Solantic Clinic on 39th and 43rd from 12 pm- 6pm.

He thinks that everyone that is required a drug test (governor workers and those on public asst.) should go to his clinics and pay him the $35 to have it done. Well...we are boycotting his sh*t!!!

The buck stops here Rick Scott- YOU ARE FIRED!

The Blessed twenty-two year old fighter.

2011-04-05T22:17:00.000-04:00

On Sunday, my son Tim turned 22 years old. Tim has reached beyond the mile stone. With DMD, he is blessed to be still be alive. He is (mentally) energetic, well alive. He has no desire to die even if his body is saying otherwise. He is still laughing loudly. He is still yelling at the nurses (lol). He is still speaking his mind and mostly...the most important things is he enjoying all his anime's online and via Netflix.

Yep...Tim is still alive...well alive. Just when his father though he would not pull through and last this long...Tim has outbeat those weary thoughts. Infact his doctors thought he has a great heart. A good heart he has indeed. He is a good guy...really not a trouble maker and other than speaking his own mind, he is really happy.

Tim is blessed to be at 22 years old now. He is ending his early 20's and now entering into his mid-20's. Yah!!!!

For those who have known Tim will know that Tim is a pure joy to be with. He makes you laugh. He makes you think. He is a good influence with conversations. He is just a pure smart guy.

We are blessed to have him in our lives. And if you missed getting to know him- its never to late!

Tim is a fighter. He has the will to live and wants to live...and because of that, he will win!

Heaven has no place for Governor Rick Scott

2011-04-01T18:05:00.000-04:00

It jsut makes me so sick that Rick Scott, the governor of Florida, has signed some stupid bill yestereday to cut funding for chiildren with disabilities. And it became effective today. No warning. nothing. I hear there are alot of lawyers out there going after his stupid fat ass! I hope they take him down and charge him with abuse!!! He is crazy. It just makes me sick that he is that heartless.

To many of you who don't have a disable child, maybe you don't care, but there are many of us who have to struggle 10x's more now because of his stupid choice. Until you are in our shoes, you will never get it. I got to get out of Florida if he is not recall by next month. I'm not paying my tax dollars to him. He doesn't deserve a cent of my earn income!!

The sad part, if he is not recall real soon, things are only going to get worse. We think we have it bad now from the last 3 months, can you imagine what more evil thing he has up his sleve?

This man is EVIL. Evil! evil! evil!!   He is clueless. He just doesn't get it. He has no clue what he just did? HE is heartless. It just brings me to tears that he even exist. This is NOT about popularity. This is about morals and values and Rick Scott has NONE!!!!!

Several years ago, I had this dream that Florida was drowning. The state was under water and no longer attached to USA. People were dying or have died. There were buried under the water suffercating, drowning. IT brought my paranoial back up so high I was petrified.   Now I know why I dreamed that dream. It was a warning of what was about ready to come. I swear I should had moved out of florida then.

The people who voted for this man, and you hate him now...well guess what? This is the consequences of your choice. You chose him, now live with his shitty choices. Now YOU will suffer with the rest of us. And if you are fool enough to agree with him and support him...I guess we will see you in hell too! Because I can guarantee you I will have my protest sign up and stand by God and make sure YOU along with Rick Scott and those stupid WBP people never ever get into heaven.   We don't need your sh*t in heaven! there is no place for it. You are cold and heartless.

It just makes me pure sick that a man like this even exist.

I hope we get him recall really really really really soon. If my son dies because of this man's stupidity ...I am going after him for murder and I can gurantee there will be many other parents doing the same thing. He is an abusive man....after what he just pulled...he is also a murderer!!!!

RICK SCOTT- YOU ARE FIRED....and from your damn office, you are going to jail (better known as HELL).

Unconditional Love

2011-03-29T13:24:00.000-04:00

I am so fret up!!!

You know everything I do and try to do is usually about Timothy.

Its not about me. Its not about anyone else.

I fight and advocate all I can with the little help/support I get for Timothy....and if I do get some, its amazing how people put so much energy in lying, manipulating, making up stories and just complain and bitch about it.

For God's sake, I'm not being selfish in any way. I have made my sacrifices..many of them. I do what I can with the little I do have. And if I ask for help- at least be postive about it and not complain and bitch about it. For God's sake, its about saving Timothy. Its NOT about Saving Dee or anyone else.

Timothy is my priority. I have given up so much to help him...including working at a real job. He requires 24/7 care. There are many things he absolutely can't do for himself. And when there are no nurses, I have to do it. I do it for FREE. I do it because I'm his mother. I do it because I'm family. I do it because I CARE!!! Its what family does, right?   We love and care enough to give up alot to make sure they have the best care ever.   I don't get paid for caring my son. I don't get paid for advocating from him. I don't get paid ...period. But yet all I hear from family is bitching and complaining.   Excuse me??? You have a freaking job. You have other income. You can take your damn vacations and buy your toys and so on. When do I get to do this?? Will I ever get to.   And If I ask for help because we just don't have the funds for that money to do it right now...instead of bitching and complaining...do it because it is family.

funny...when I had the money and they needed help. I gladly did it. I did it. Do you know why??? Because they were family and there was NO need to complain and bitch about it. Nor was there any need to bring anything in the past up. You do it because that is what family does. You care enough to do it. And the thing is I promised to pay back and that is my intention.   Honestly. (if that child support ever shows up). however, I never asked for anything more.   and if you voluntarily give money as a gift...don't lie and say that I demaned it when I never did such thing and don't beg for it back.

People seem to not care about Timothy.   I have found quite a few selfish people in my family. Seems like things are now considred "conditioned".   "I'll help only if you...." you know? Yet- when I helped, I never gave any conditions. It was all done with unconditional love.   Unconditional love. Becuase that is what family does. No expectations. Not asking for anything else. You do it because that is what family is about. No complaints. Gladly do it. Because family helps each other...right?

I don't know what it is with my family and why things have to be conditioned "no help unless....you pay me back."  And I have always kept my word paying people back cuz I do pay back. But what I hate is when I do pay people back....people have the nerve to lie and accuse me of shit and say I never paid them back knowing I did pay them back. I hate liars.

Right now...I owe the bank money. I don't have extra money. The electric will be cut off today because the last extention has already given. So tonight I'll have to call 911 and have Tim transferred to the hospital. I don't know if they can admit him because he is not sick.   So we probably have to sit in the lobby and bore ourselves. Its what we have to do to survive. Waiting to hear back from one doctor of what to do next. Waiting to hear from another doctor too.   I'm afraid to go grocery shopping now. not sure if we will have power or not.

Folks...family is about unconditional love.   You do things for family because you love and care about them no matter what. If disucussion is about paying back then accept it but don't put conditions on it. And don't lie and make up stories. Its not going to get you anywhere nor is it going to make you more powerful and it will for sure won't be a control thing either.

You know...every day I'm thankful to God for how He has many times has helped and supplied for us. He has done many wonderful things for us that I have NO RIGHT to bitch or complain. I'm thankful for the blessings He has with us. I'm thankful for the blessing that Tim is still with us. IT is God's powerful love and compassion that we are still here and that we can be that blessing to the many outt there. I really have nothing to complain about. God has always helped us in times we least expected. He has never failed us.

That my folks is...Unconditional love.

PTSD or PTS

2011-03-22T22:55:00.001-04:00

I had the chance to listen to some cool videos on PTSD. Its by Dr. Bill-one of my favorite persons who is pretty much a specialist on this topic and has pretty much helped me with it.

People who suffer from PTSD also suffer from being labeled as having a mental illness. This video explains how changing the label will help change the mindset and inturn allow those who suffer to move forward.

If you can not see the video here, go to: http://www.youtube.com/watch?v=wqAzaZ04PGg&feature=player_profilepage

at this site you can see some of his other videos on PTSD as well.

Learn...& enjoy!

A Vegetarian Cookbook woe

2011-03-21T16:48:00.001-04:00

I'm so exhausted, and still very much in pain. Its been six weeks and I still hurt like the day of the surgery. My back is killing me worse than my car accident.   And Maxim-the nursing agency has already 5 strikes against them since they claimed they can staff 24/7 and yet...they already have failed.

So I sent an email out to friends and family to help us purhase the book SAVING OUR SON'S-ONE STORY AT A TIME- with hopes to raise funds to buy a wheel chair lift for the van. But that looks like that will have to be put away for now as I owe so much to the Morris Publishing (cookbook) that it looks like I need to send the funds to them and break my back with Tim's power wheelchair by pushing it up into the van. I guess my health wellbeing is not all that important. but then again if I don't have some kind of assistance for Tim I will be no good for Tim or anyone else or for anything else. I can't lift those boxes as it is anyhow but now for sure!! I can't sell cookbooks if I'm in extreme pain.

But it looks like I'm forced to pay them, which I totally understand. I'm not disputing it. But you can't squeeze blood from a dry beet! Know what I mean? It makes me sick. totally. It brings me to tears that people I trusted has pretty much betrayed me and left me out to dry. With very little or not help at all -no support. Its all I hear- excuses....excuses...and more excuses.

I am on disability. With that I have to somehow pay my rent, try to pay the electric bill since Tim is on a ventilator 24/7=365 days a year. I live off of $59 of food stamps a month. But its like NO one gives a sh**.   I have to fight for me and Tim to survive.   I feel people I trusted has abandoned me and left me out to dry.

I need to sell these cookbooks. I have about 400 of them left. Right now they are selling for the low cost of $14 (plus shipping). It is a delightful Vegetarian Cookbook with lots of delicious recipes in them.

It looks like I may have to raise the cost soon since we owe the publisher so much due to interest. Sadly. I don't want to but maynot have a choice.

So anyone who is reading this, whether you have one or not, please purchase one or more. They are wonderful as gifts. But you can please please please help us sell the cookbooks. Tell your friends about it too. Go to: http://from-heart-to-home.blogspot.com/ to purchase by pay pal.

Thank you!

Saving our Son's...one Story at a Time-ORDER

2011-03-18T15:51:00.002-04:00

As some of you know, I recently submitted a story for a collaborative book, "Saving Our Sons, One Story At A Time." Release is planned within the next 45 to 60 days. This book contains 32 stories written by mothers of boys with Duchenne Muscular Dystrophy, the disease my son Timothy has.

Our story is unique. By the time the book is released, Tim will be 22 years old. Since Duchenne life expectancy is late teens to early twenties, this makes Tim what's called a DMD Pioneer, a man who is beating the odds. We feel honored that Tim story will be in this book. The book cover can be seen here:

For those of you who are interested, pre-orders for this book are now available. Each of the "authors" who submitted a story will get a small portion from these book sales. Tim and I will put ours toward the purchase of a wheel chair lift for the van.

Please be aware, these are pre-orders. The book will not ship until the actual release date 45 to 60 days from now. And please, do not feel any obligation to make a purchase! I'm sharing this with friends of ours that I think might have an interest. If you do, fine - buy a book. If not, that's fine too. Perhaps you know someone else who might be interested.

Orders can be placed here:

http://www.mistyvanderweele.com/sosorderpg01/?ap_id=deebird

Thank you my friends,
Timothy & Dee Bird

Cold feet and stubborn old bodies!

2011-03-08T12:59:00.000-05:00

So....here is the latest! LOL   I'm such a quack...anyhow.

What a weekend. I had no nurses for Saturday or Saturday night. So after Tim watched his midnight shows, i called 911 for assistence in getting Tim to bed. I'm still unable to lift due from my surgery. I was doing my routine with Tim after he is bed when suddenly he needed to be suctioned. It is something you usually have to do with folks on ventilators.   Anyhow, he could not catch his breath or anything and instead of suctioning the 2 x's I do I fnd myself suctioning more than I should have. I got so fustrated and then he started to complain of pain in his right chest and then popping noise. Well I didnt like that! so I called 911 back. they couldn't hear anything but it still didn't sound right so I told them to take him in so he can get xrays.

Well I got there....and there were still working on him and then did xrays. well they saw something so they did a cat scan. Well low and behold, there it is- a pnuemothorax - a collapse lung. Ouch!! Tim's nurse, Nancy sat with him for a while so I can get some sleep. They admitted him into MICU . He is currently stable but still have some infections n his lung-but they don't think it is pnuemonia. The collopse lung or pnuemothorax is small so the chest tube didn'thave to be put in. But he is on IV's and all kinds of stuff to monitor his b/ p and stuff.

He is wide awake and joking and laughing and teasing he nurses.

Meanwhile...lol...I'm stil in great alot of pain. I broght the air mattress in since this chair thing is gosh really uncomfortable. and my heating pad too.    I am smelling chicken salad.   I'm also hungry for the steak and shake burgers.   lol but it hurts to eat as well. so I've been careful with I eat. Hey -their cafeteria has a big changed and now they take debit cards!!! its like thank you Jesus!!! what a difference. Food is better too! compliments to the new cafetaeria manager!   2 thumbs up!

anyhow...I'm lying down to rest and then back to "work" as I help mysister with calls. Have a few pages yet to schedule folks.

I just wish the pain would just stop and let me do things but my old body is being stubborn.   maybe that is why it is stubborn-its old! LOL   ha!ha!ha/!ha!   my feet is cold!   time for All My Children- later folks!

Nuteena, Creepy snakes & PTSD

2011-03-01T16:18:00.000-05:00

So I was re-admitted back into the hospital last week with more complications from the surgery. I actually thought I had developed pneumonia or blott clotts in my lungs. I had to wear a halter heart monitor for a day.   But come to think of it it might been cuz the day nurse was using way to much bleach and it was just affecting my lungs. I say that cuz 2 nights later she did it again and it started all over again. Thank god that nurses no longer is with us.   I had to give her the boot.   That alone is another story.

I slowly recovering from my surgery. I had a bad night last night but feeling better today. thank god for the little white pills.   Still have some pain but that is expected.

The weather has been nice here in Florida. Really nice. OH! oh! Oh! We had a little brown snake in our place today. I was laying on Tim's bed with the cat waiting for the day nurse to come in when Baby jump and stated to chase something. I looked and at first didn't notice anything and before I knew it- it start to crawl on the carpet and I screamed. The cat harrassed the thing until we found somone to come n' get it. It was a tiny thing but still creepy.

I was asked to write a blog on PTSD for an online Health magazine. This is going to be interested!   This is the site: http://www.healthcentral.com/    Not sure when I will start but it will be fun to do.   Of course I'll ask Dr. Bill to help out as a guest writer.

I've been having cravings for my NUTEENA and found out it is not made anymore but somone found the recipe for me, so someday I'm going to adventure and make it.   Alot of people confuse it with Nutella. Not the same. One is a sandwich spread and one is not. but both are very good.

Well...I need to go lay down for a bit.   Catch ya all later!

Friends

2011-02-15T16:33:00.001-05:00

Friends. What are friends? What really is a BFF? really?!   Is it really worth it? What if your so call BFF told you that you'll be friends forever and that you are like family but yet most of the time they treat you like.....what is the word for this?

I am angry. I am upset. I am deeply hurt. I have come to the point now- I don't want friends- or afraid to have friends. Its seems like every time I start to trust someone or even really care- I'm fucked! Big time.

For 3 years or more, every day this person and I talked if not only in person but on the phone and even by text messages. Three years. Every day. Sometimes more than one times a day. Even at one time she cried and told me that she will always be there for me no matter what. And that I was like family to her. Timothy too. But yet, not once has she ever come to the hospital to visit Tim when in hospital. NOT once.  And this person has not only once come to see me when I was in hospital with the surgery- she did NOT come to visit muchless call me. NOT once. I called and left messeges and text and she did not respond.   I finally sent her text last night and "threatened" to call the police if she did not respond. and oh how convient she texts me back. and then today she said she was "sleeping" but only moments after I left she leaves her front door open???   She fucking pushed me away. Nothing I did matter? Not my pain. Not the forbidden driving. Not my feelings. NOTHING!!!

I am not suppose to drive. I'm in fucking pain and yet today I made the effort to go look for her to check on her and do you know what she does to me- she pushes me away!! She pushes me away. What happened to being friends and family? What happened about caring?   What happened to the good and the bad and being there for each other's backs?   She fucking lied to me. and then she had the nerve to tell me that I didn't need a therapist cuz I have her. But where the hell is she when I need her? I have NO ONE to go to-to talk to to cry with.

Ok- I get it that she is depress. I 've been there but I never let my depression stop me from anyone else that I cared about. I still fucking reached out. I still showed my compassion. I still had a listening ear. Right now- her Judge Judy is far more important then saving this friendship.

Why do I do this? Why do I fucking care about people. Why does this keep happening to me? I'm so tired of caring for people and only to get stabbed in the back.

I can't do this no more!!!! I can't be around people anymore.   I'm tired of being hurt over n over - over what???!!! What have I done to deserve this?   I'm so broken. I've been lied to.

I guess I am a worthless piece of shit! Point taken!

DND!! do not disturb! My brick wall has gone back up and will stay up!

Saving Our Son's...one story at a time!

2011-02-09T10:06:00.000-05:00

I'm hoping to get an HTML on this...but wanted to share with you about a fascinating book that will be out in the next few months.

Have you ever wanted to know and learn about a disease that can easily affect your family. Maybe it already has and you are just to afraid to learn more about it.

Here is a new book published to educate the world about Duchenne Muscular Dystrophy. My son is affected with it. His story is also in this book. This book will tell you the stories that families endure while being a caregiver for a loveone affected with DMD.   It also tells you about the disease and how many are affected by it.

I promise you that this book will affect you life. It will bring new light and understanding and you will see the person affected with it in a new way.   And you will feel less afraid of the person or the disease once you educate yourself and those around you about it.

Be a participant- learn today! It can not only change your life, but perhaps the lives of many around you.

You can order the book today by clicking on the book, be one of the first to learn about DMD.

Thank you for your support!

Surgery Experience...a nightmare!

2011-02-09T09:46:00.001-05:00

I'm home!!!!!

I got home Sunday evening after spending five days. I had some complications during the surgery and then on Friday, my blood pressure dropped, my oxygen level dropped, my fever spiked. they were not sure what was going on but feared that pnemonia as stepping in.

I was in so much pain!!! OMG. it felt like razor blades running through my body. it was like the pain medicaion didn't do any justice. But then by Sunday afternoon after my cat scan I felt normal-for once. I walked around like normal.

I was starving when I went into th surgery- wanted my pizza party and still felt that way when I got out but has hold it off. Tim stayed home with the nurses near by. I had hoped to have family stayed but no volunteers.

I ended up taking the taxi cab home because no one who claimed to be friends were available to help out. Suddenly phones were turned off!   I was like ok...I'm never doing anything again for these folks again!   I mean for God's sake, I just had serious surgery and need help and you all run and hide instead of helping?!

No ONE came in to see me except 2 of Tim's nurses. No one called except for relatives from out of state. No "friends" came by muchless didn't even call.   I was left alone to deal with this shit. Thank God for Jennifer, she brought me some Wendy's otherwise I would had starved as the stupid nurse never ordered my food. I got no cards or flowers. No phone calls. No visits.   I really felt like a worthless person that no one was willing to take the time to come and visit me or at least call!!! And when I needed a ride home- it seems everyone decided to hide.    How's that for people who suppose to be your friends?

The hot showers at the hospital were wonderful!!!! omg!! they were great.   but the food was just plain disguisting. The nurses -well most of them were ok but quite a few were just plain "lame" (well I have a better word but won't say it). I would like to use the word "ignorant" too. as I had developed these rashes on my hips - I can see them plain as day but the one nurse was blind as a bat! "I don't see anything there."

are you kidding? lol

Yesterday, I learned from the doctor before taking out the staples that one of my tumours was beginning to turn into cancer.   She told me if we had not taken everything out I would had ended up with cancer and that would had not been good. So thank the Lord for this surgery. Saved by a turmour.

Anyhow, I'm home. I'm still very sore. Its hurts to turn over in bed. I'm having to eat soft foods as i am finding blood in my stools now. I had to drive myself to the doctors yestereday because again "friends" were not willing or available. And that was a painful experience. Very painful.

well I'm trying to catch up on my soaps as One Life to Life has been really good lately. My cat has missed me and won't leave my side. lol she so cute. even Tim is laughing about it. He's glad to have me home too.

I'll get back to tell you all more later!! Have a good day (or week!)

Safe hugz!

The Journey to the Operating Room

2011-02-02T00:16:00.000-05:00

Surgery. Surgery. I have never had surgery before. I have never been under before. So...now I just don't know what to expect.   For a while I was having anxiety- thinking that I would be dreaming and the fear of my many nightmares would appear and that I would not be able to awake from it. But people keep telling me that you don't dream. Your out and then you are back. Hey I would like to at least entertain myself and dream, right?!

In a few hours, I shower, pack the last few things. Spend some time with Tim. Leave some additional information with the nurses, stop by to pay some bills and then I'll jump on the bus and ride to the hospital. Doesn't seem so scary, does it?

I guess if I survive this, I'll have to write about it, ha? the joy of journaling or blogging. Sharing your experience. Whether the news is good or bad- its the experience, that journey that you journal about and hopeful through it, learn some new lessons.

I don't know what will happen tomarrow. I don't know how my body will react to all of this. I don't know if I'll ever wake up. I don't know if I'll ever see any of my friends or family again. I just know that I need to make sure that my heart is right with God. I need to make sure I have my peace with Him.   And in some way or form, trust that our family will take good loving care of Tim. By the way- I was suppose to have my Last Will & testament done today (really last week) and procrastinate- again! Maybe I should do something quickly-not sure if it will still be good not notarized but hey its MY WORDS, right? Its my thoughts. Its my opinions. Its my rights.

Tonight...two mormons showed up at my door as "missionaries"...well we got into a good discussion until they brought something up and then I flipped! Its was NO WAY!! the Bible does NOT teach that. It never happened.   They honestly believed Jesus came back from heaven after His crucification to teach the people in the Americas.   Really? Are you sure about that. I have never heard that before and really believed it to be the brainwashing thinking and whoever taught them is DEAD WRONG.   That did not happen. Again- a false prophet. i was upset about it for about a hour. Then I just let it go when I couldnt even find it on their website. I know its not true. I know it didn't happen and I know what the Bible teaches us. Sickening. I would NEVEr join that church. Brainwashing.

Well folks. I can go on and on...but I won't bore you. (LOL) I hope to be back to tell you about my jouney in the operating room. And if I had my pizza party.

I wish you well and prosper. I pray God will lead and guide you and help you with the choices that we make every day. He leadeth us. He guides us. He loves us. He-our Heavenly Father. Yes...even you CJ!!

Safe Hugz,
Dee

PS when I get back, I hope to write on " The Christian & the Athiest!"    It will be quite a story.

Happy Journey!

Child Support Settlement is an answer to prayer

2011-01-24T15:09:00.000-05:00

It is unbelievable!! I was laying in my bed in extreme pain. Nearly crying. Only a week left till the surgery and I'm still not sure if I'm gonna make it that long.

Today was the child support settlement case. At 1pm I waited for the call. Nothing. Then at 1:30 I got the call.   It was Mr. Jones again. He told us this was a "new" case and it was not from what they had 3 years ago. Ok...no problem (but then again I knew that).   When he found out what Victor wanted to settle on , he was shock. Mr. Jones said that Vic didn't bring in his pay stubs or tax forms (why am I not surprised) so they went online to see what his income was and from what they figured, Vic should be paying $2242.00 in child support.

"What???!!!!" I was shocked. It definitly was something that I was not expecting. Maybe $750 but not $2242.00. That was way more than I had expected.  Because Vic was also paying health insurance, we negotiated. I tried to bring it down to $850 but Mr. Jones said no. The courts would not accept that. I was again shocked. He also said that they for sure would not accept the $450. Really?!! (wonder why?!) So we finally settled at $1500 minus the insurance so now he has to pay $1108.50 a month. OMG!! really?! really?!   REALLY?!!

Last night he said he was paying $800 for family for health insruance. So I figured with 5 of them it is about $160 a person. But he told them something different and even more than what he told me. But that is ok.

I just can't believe we won it and that we are getting much more than expected. I know Vic is not happy but he should had listened to me when I told him to bring in his stubs and tax papers and again he failed to do that. This time they didn't take his word and they looked it up and found out how much he really was making.

I have not heard back from him...may not for awhile. But even if we wanted to settle for $450, the courts would not accept it. they wouldn't even accept my $850.

So now, we are opening Tim's SPECIAL NEEDS TRUST ACCOUNT so that the money is going directly into it. I don't want to touch it. I can't. I have to make sure that it does NOT affect his SSI and his Medicaid or even food stamps. The account can not provide for his food or shelter. It can pay for medical bills not paid by medicare or medicaid and utility bills. it can pay for his other needs.   So now to find the tax papers and go open it. I need to make sure the child support is directly deposit into it. I can't touch it at all.

Thank you Lord..He heard our prayers!

Life Skills coaching

2011-01-21T20:20:00.000-05:00

Life skills coaching. We've all heard of it. What is it about and how can it really benefit us.

If you have heard of Maya Angelou- in a way she is a life skills coach. Her inspiration, her hopes, her knowledge, her skills, her words all taught us how to live our lives and reminded us how we all are teachers.

My friend, CJ who has her masters in mental health counseloring is now a LIFE SKILLS COACH...she is now taking clients in which she goes to their homes. Although she is a MH Counselor, people need to understand that LIFE SKILLS COACHING is not therapy, not counseloring. Although it seems like it-its not!

You read more about what its about at her blog: http://solutionskills.blogspot.com/ and if you google it, you can learn alot more.

I also know of Dr Bill -another MH counselor from WIIT who also has his Life Skills coaching which he helps people from the telehpone and from Skype. You can read about Dr. Bill and his coaching at his blog:
http://williamtollefsonvalues.blogspot.com/

If you want to do something new and better for yourself or whatever your current "issues" maybe, give one a call and let them help you.

Abusive Blogs?

2011-01-19T15:36:00.000-05:00

For some reason my blog has been marked as being "Abusive" Not sure whom did it or why? But what is abusive about it. Its MY BLOG with my journey and opinions of my own. That is what blogs are for!!

Who blocked or marked by blogs as "abusive"

teenage challenges....rebellion or not

2011-01-19T15:28:00.000-05:00

To some...I was rebellious (and yet got away with it) while to others i was being a typical teenager, to many I was normal, while to others I was disobeying God.

I had come from a strict religious background. Pretty much we were not allow "dating" or any kind of boy/girl relationship. It was forbidden. And if you are caught...God forbid....you were in trouble. In my case, beaten.

I remember in my teens before leaving for academy, I met this guy at an Adventist summer camp. I really liked him.   He was from Richmond VA and I was from Culpeper Va.   So we had to find a way to communicate. Somehow we found a way to create a code for our letters and we used that so that if my folks found the letters they had NO way of knowing of what we said. And although I created the code...lol...I still needed my cheat sheet. I just didn't know it by hard like I should. (LOL). Well, my folks found out about it and demanded I tell them what the letter said. I, of course, was not going to tell them. That was considered private in my eyes and it was NOT their business. Because I refused to tell them, I, of course, got a beaten for it. I don't mean a spanking-but a beating. Black and blue!

This made me angry and more rebellion. My folks were pushing my buttons and pushing me further and further away not only from them but their religeon.   You can't change who I am or my personal goals and wishes. And I was making sure they wouldn't brain wash me either. I was tired of the beatens in one hand and the bible in the other hand. I was tired of their religeon being pushed down my throat.   It was not the way to win people to God.

Of course, the rest of my teen years I had my ups and downs and yes even hidden relationships and/or crushes on guys but I knew I had to be really careful and yet there were times I was also accused of things that weren't even true.    I wanted to change my life. But it was hard to when people were being to pushy their religious beleifs that at times I wasn't sure I was surely convinced myself of my own beliefs. I believed in God and I believed what the Bible said about the Sabbath but I was surely upset on how they were doing other things simply this old lady from the 1800's said.    I believed in step by step-step 1. take each as baby steps but I didn't believe in pushing people on stuff they were NOT ready for. It has to come from their hearts of their own beliefs and not be forced.    (hoping this makes sense.)

By the time I graduated from Academy, I went to a place which was almost as bad as the academy and where my folks had got all their beleifs from. Why i went I don't know- but I was broke and I didn't know where else to go and I thought at least I can find a place to survive on ....and I did want to take some classes from there too. But while at Wildwood, i met a guy I liked. I knew of the rules there and yet I was now in my most rebellion time of my life. Of course, Clarke and I snook around - we had too. It wasn't to difficult but we did it. I can't remmeber why we "broke up" but we did. But he was a good looking guy and I did like alot about him.

Yesterday I ran into a photo of a friend who reminded me of this guy I met while at Wildwood.   I got involve with another guy. I can't remember how I met him but knew his parent lived on the campus. Somehow we got hooked up and I remember it was during some evangelistic services in the Chattanooga area.

Eventually things starting going down hill for me that even my depression was worsened.

My teens years believe it or not was just normal- typical.   There was really nothing unusual about it. But for the Religious "cult" that we belonged to - I was disobeying God. I was rebellion. I was not doing God's work.

I was trying to be me. I was learning to "grow up" on my own. I was not perfect. I was learning from my own mistakes.  I was learning to be an adult.  I was learning how to survive.

And sometimes...with some of us...it takes a while to grow up!

I don't want to get old...the big 5 0 !

2011-01-17T23:35:00.000-05:00

So I heard some good news from a few people, including my twin....we are NOT seniors until we are 55 years old. Whewwwwww!! I was awake on Saturday morning (ok around 1am) when I realized I was an officia "senior" now that I am 50 years old. The good news is...I got 5 more years to go!

Saturday was my 50th birthday. Yeah, yeah, I"m a half century old. I'm an old bag. I'm an old lady. I have very little gray hair (thank God!) but the little I have scare the hell out of me.

I just don't want to get old! I don't want to be old. People keep telling me "I'm as old as I feel"- Ok let me just laugh ...physically I"m as old as a 90 year old even if mentally I'm young as a 25 year old. And you know those two clash. You just can''t get up to dance the rock n' roll like you can as a young chick when you feel like an old lady with a walker or worse a wheeel chair!

My kneees hurt. My hips hurt. My ankles and feet hurt. My shoulders hurt. My elbows hurt and mostly, my brain hurts. Yep- I'm old! I'm a young chick in an old lady's body.

I spent all day Saturday in bed- crying. Depressed. I just hate my life. then I got up and watched some movies and then I got up to start making dinner hoping that my birthday party that I was putting together was going off with no hitch. But I kept getting messages from people that they couldn't come. I was really getting made that people were making excuses. But then Tammy said she was coming with the cheese cake and then Lea said they had a flat tired and didn't think they could come...until I offered them the ride.

We had a nice spaghetti dinner with french bread, green beans with corn and salad. Of course, Lea and I finished off with the Japaneese wine- Sake. It was good. We, of course, had the german chocalate cake I tried to make (oh my god, it was lopsided) pluse the New York cheese cake Tammy brought. That was good! absolutely good! I just love Tammy.   She is so awesome to talk to...Lea too!

I, of course, was still in a lot of pain. I was feeling sick. If no one was going to show up for the party, I was marching myself right into the ER. The pain is just unbearable and now, its to painful to eat. Its driving me nuts.

Well...now I'm gonna liee back down and try to release pain...but I think you got the jift of my 50th Birthday.

Yah- I'm an old bad! the big 5 0 ! I'm the half century old. Its hard to believe that 30 years ago I was only 20 years old.

Where has all these years gone?

Gosh...I'm old!

God, Do you eat double stack cheese burgers?

2011-01-11T18:07:00.000-05:00

...continued

God...do you eat double stack burger cheese sandwiches? When feeding the homeless, are we also feeding God. What if God is one of us?

God walks amongst us. We don't know what he looks like. We don't know how he speaks. We don't know for sure how sits amongst us. We don't know for sure what gender He is. We assume He is a He. Right? But what if amongst us He is not a he. Ok..we know he is not a transgender (or is he in his most holy behavior though).   We just know He is somone that we worship a wonderful man who we know loves us all very much. Who is a forgiving God. A friendly God. A loving God. An accepting God. A giving God. A fatherly God. A Holy God. That we all have lovingly accepted.

But...what if the person next to us is God. or a person that sits across from us. What if it the man up on the potium preaching to us? What about a doctor? how about that nurse? Or the person i like to call a "vampire" (only because they like to draw blood from us).   How about that new born baby just born. How about the man laying under the highway with an old blanket, scrubby, dirty, smelly, raggedy just asking for a handout.

Do you think that double cheese burger stack would had really mattered? do you really walk around with a bag full of vegetarian foods? even if you do, is it eatable at the moment?

We know when Jesus was here on earth, it talks about Fish, bread, manna & barley. But that was the day back in when there was a limit to what they can eat. What if he was here today, right now. What if he was the homeless man that needed a bath.    What would you give to him at that moment you may have a bag in your car?

What if God was one of us...how would you react?

God, Do you eat double stack cheese burgers?

2011-01-09T17:28:00.000-05:00

I had just completed my errand at Wal-mart and wanted to quickly stop at Checkers for the quick 2 for $3 burgers. I had decided to order the extra roast beef sandwich. As I drove down the highway, I eat my chicken sandwich as I pulled up to my exit. I can see in a distance an old man sitting on the wet cold ground holding a sign.

I knew I had that extra burger in my bag. I took out the roast beef and prepared to hand the bag of a burger sandwich as I came closer to him, as I got closer I realized this man had a long dark gray dirty hair and shaggy long gray dirty beard. As I drive by him, I hand him the bag with the burgers, and continue to turn into my lane to my home.

It was a gratifying to know that somone had something to eat. It was gratifying to know that I stepped out to help somone I didn't even know. and it kept entering my mind....what if he was God?

What if God was one of us? What if he sat on the road side, with no bath, with a long dirty gray hair and dirty gray curley beard; hungry, dirty bagged clothes & begging for money.  What would you do?

As I drove closer to home, the thought entered my mind and I found myself asking out loud..

."God, do you eat double stack cheese burgers?"

have you wondered if God does eat, what is it that He eats...really? Not to say He is impure, we all know He is not. I'm more than sure He eats wholesome and good foods.   We all do.   But when Jesus was here on earth, what did he really eat or enjoy to eat?

....to be continued.

The Unbearable Pain....

2011-01-07T05:15:00.000-05:00

Sometimes I wonder how much pain Jesus had to bare when he was physicially and emotionally tortured by the Romans and then nailed to the cross. We all know men can't bare pain like women can. So it must had been a serious trauma to him all around. I can' stand watching the movie "The Passion" I think it is call because it triggers to many memories for me.

I never had that surgery in August so now I'm really suffering the consequences of it.   I am been having alot of low back pain but it is now worse. I feel like I'm in labor again. It hurts to sit. It hurts to stand. It hurts to walk, it even hurts to be lying down.   I have a prolapse uterus full of fibroid tumours, and now I have cysts on my ovaries. I am hurting so bad that even the pain medications are not doing anything.

I was at the doctors yesterday and told her that if she doesn't take this out real soon that I was going to do it. I don't think she took me serious.   She knows I'm in extreme pain but for some reason she is all booked up for surgery and can't do anything until February. So I have another month of suffering.

The pain is triggering a lot of painful memories so I'm trying to stay positive but its really hard to.   I just want this thing out like yesterday and I'm not sure what its gonnna take to get it out!   I was in the ER on Monday and even they said it should be taken out real soon. I feel no one is really listening to me and my pain. Well they are but yet the pain medications are not doing anything anyhow.   Its like really drug me before I find a knife and pull the thing out myself.

In about a week I'll be 50. yep...the big 5 0.   OMG!!! there is no way I'm a half century old. Righ now my body feels older than that but I just don't want to get old. I can even see the gray hairs coming out but I think that is due to more stress then it is about age. lol know what I mean. But its time for hair coloring. I just don't want to be consider "old" no matter what anyone says.

I have more to say but right now the pain is beginning to wear on me again for sitting here even if I'm sitting on the sofa. SO......I'll try to come back adn write more.   Not sure if anyone is reading my blogs anyhow. I'm learning to keep my trap shut as no matter what I say I seem to still get into trouble. Another topic I have to discuss.

Later...just need more drugs!

Fear triggers PTSD

2011-01-03T04:07:00.000-05:00

It's 4am. I can't sleep. My anxiety is really getting to me. My fear is overwhelming me. I'm in so much pain. I'm so afraid of what is ahead that it is causing me to have this anxiety. I even feel my PTSD jumping out and flashbacks are shaking me in and out. I'm on the verge of just taking all my klonopin now. just to find a way to calm my mind down. It's racing a thousand miles per hour. It just won't stop.

I need to sleep. I need to sleep. I need to sleep.

The Truth to be revealed

2010-12-29T09:55:00.000-05:00

I woke up with this terrible fear of something bad about ready to happen. I don't know how else to explain it. Suddeny my PTSD went into action and I began to have flash backs of an incident from 2008 in Orlando at the Florida Hospital.   It was tragedy that shouldn't never happened and yet sadly someone had to take a blame for something that Florida hospital employees should had been blamed for.

Many years ago, I was a patient at FH CBH - its a cold place. It's staff are cruel and heartless and very provokable. I've seen them act like this, not only to me but to many other patients.   then in October 2008, it happened. I wasn't there, but from the stories I heard from the people there and what was on the news, I knew immediately what happened.   A patient was provoked by Kevin, one of the techs. Same guy who likes to provoke everyone else.   When a patient is asking for help and needs something and you intentionally put them off constantly instead of helping them, it does get under your skin and it does cause you to feel "violent" towards that person. I know there were days I wish to jump on those guys and a few nurses because they are just cruel and mean. Sometimes I think they have to much power. Sometimes I think they are God and sometimes they think they are right now matter how wrong they are.   I can simply testify to this. I've been there and got that treatment and I know many others who have too.

Whatever it was, this patient got pissed off at that tech and started a fight. Maybe it was deserved to that tech. However, when an RN try to stop the fight, unfortunately he was seriously injured that later led to his death.   I'm not blamming the RN. He was a nurse of mine and is the sweetest guy and easy to talk to. he was also a very good looking man and didn't look his age at all. But he did what was right and try to stop it but it cost him his life.   However, i don't want to blame the patient either. The fight wouldn't had started if the tech would just atteneded to this patient. Instead he continued to not only "ignor" him but provoked him. The tech caused the patient to be upset and caused a conflict.

It had NOTHING to do with his illness. It had to do with the staff who would not attend the patients needs. I'm sure the patient asked for help all day too. Hey I've been there when you keep asking and you keep get ignored.

Fortuantely, the judge later found the patient NOT GUILTY but "insane".   Well, he wasn't guilty anyhow, no matter what. The people who should be blamed for this nuses death was his own fellow employees.   I can name them all too. This nurse didn't have to die. He shouldn't had died.   But I believe the patient was defending himself from all these "insane nurses/techs" (not the one who died though).   Unfortuantely, the patient is now spending his life in a facility unnecessarily.   IF the techs would had just done their jobs and helped him when asked, none of this would had happpend.

So all I have to say to those employees of FH CBH- you all are liars! you blamed this man for something that is your own fault by default!!    You couldn't take responsibility of your own action and YOU GOT AWAY WITH MURDER.   One day...it will bite you in the ass and you will burn in hell.

This man was attacked by YOU all and someone died because of YOU!!!!   not by this man!

Well I have to go....but I can assure you the truth will be revealed!

Christmas

2010-12-26T14:36:00.000-05:00

Wow!! I didn't realize it has been that lonnnnnnng since I posted something here. Sorry about that! LOL

It has been sort of an eventful month. I can't remember it all except the amount of time I've had to sleep alot...its the depreesion.

Oh! Oh! CJ- my therapist who was "fired" 2 months ago, is starting her own "practice" by doing LIFE SKILLS COACHING starting next month. She is just waiting her her lisensce to come in and we are working on her business cards/logos right now.   But she starts at the beginning of 2011.   I look forward to that session. So if you live in North Central Florida (Gainesville FL area)...let me know and I'll be glad to refer you to her.

We had a good xmas yesterday. My sister, Donna and her family came up. We had a good dinner and then open gifts and then soon after they left back to Orlando area.

Right now...I'm just so tired I want to sleep. I have been addicted to the new game Facebook has- Cityville. I've been ignorning my Farmsville. LOL   Crazy old me!

So want to wish everyone Happy Holidays! have a safe one. See ya in a few days.

its just a toothache!

2010-12-03T18:20:00.000-05:00

Ahhh!! What a week! Spent most of the week on the phone trying to resolve alot of the issues for Tim's medical needs and plus trying to make sure things will work out for the Child Support and Tim's trust special needs account. I think I got it all resolved. I think! I pray at least it is all resolved.

I've been sort of depress...so I've spent most of the week in bed sleeping and/or online but just not interested. I don't know why or where that came from.

The last couple days I've had a terrible tooth ache. No matter what I did, it still hurts.
I've also managed to get Tim to put money in Tim's account so that all his bills are paid off. I think we might have extra money...enough to get stuff you can't buy off of food stamps. you know TP, paper towers, laundry soap, stuff like that. and maybe we might have extra. so you know I'll be visiting the dollar store.

I know I have things to say but right now this tooth ache and feeling sleepy is getting to me. So maybe I'll be back later!

Happy Thanksgiving Everyone!!

2010-11-25T17:24:00.001-05:00

Happy Thanksgiving everyone!!

Today, Tim and I are home alone. We had thought family was going to come up with the turkey and green bean casserole but they didn't so I had the "chicken" from Angels food ministry which was terrible! Like ribs, it is boney with very little meat on it. so what I can get out of it, I added to the bread stuffing and had corn on the cobb. I'm about ready to have the Pumpkin cheese cake pie that his nurse, Jennifer made yesterday. I also had salad with fresh tomatoes.    I had rather the turkey with the sweet potatoe casserole and green bean caserrole but apparently it wasn't meant to be and when you are broke, its not like you can run back to the store to buy those items.   With only $5 left my account and still have utility bills to be paid by Friday (tomarrow), there just is no luck! LOL ya know what I mean?!

Tim has been up most of the day on his computer watching videos and his anime. I have been catching up on All My Children and watch my netflix movie..."Mental" which was good. hate to see it end. Plus I took a nap. We didn't have a nurse last night nor today, so I'm working double shift for Tim (and no pay!!!). I'm very tired so I hope our night nurse comes so I can sleep.

I did the last load of laundry too...out of detergent soap until next pay day (oh another week!!). I need to clean kitchen before the nurse comes and put food away.

Baby- my cat is such a spoil cat. She decided she was the one who would sleep on the sofa and leave NO room for me to lay back on. She is all stretched out on the large sofa. So i went to go lay on Tim's bed so I can hear him better if he needs something and guess who walks in to lay next to me?! Baby!! Tim had guaranteed and we both predicted she would do this and sure enough...there she is. But guess where she is sleeping now? in her own little sofa by the window. lol only Baby!! (oh take that back...she is now sleeping next to me on the sofa...spoiled cat!)

So far, no one from family or friends has called...I knew that would happened. No one ever calls anyone anymore on the holiday like they use to. I have been wanting to call some folks but I never know who is home or what time they are eating so I'm slid back into my covers and just isolate myself.

It has been a beautiful day here in Gainesville. It is slowly starting to get dark. The day has quickly come and gone. Tomarrow is black friday and since I'm so broke, you know this will be another year without going shopping in the early mornings.

Tomarrow and Saturday I'll be at the Books Inc. and hoping to sell the cookbook there. Keeping my fingers crossed.   Need to sell them badly. Hey if you need gift ideas, why not give our cookbook as a gift. It is great gift. You can see it and learn and purchase it at our website: http://www.fromheart2home.org/

Well...I hope everyone had a better day then us! Hope your meals were delicious too.   Take care! Have a great and safe holiday weekend!

God is Taking Care of it!

2010-11-20T11:40:00.001-05:00

Yes...its true!! I finally did it! I took my son's dad to court for continuation of the child support and yesterday they tried to serve him and I got that nasty phone call that now he is threatening me that if I don't take it back I will loose the life insurance, etc..etc..etc...

The thing is he knew we won in 2007 but we suspended it because of Tim's SSI & Medicaid and of course he promised he would pay me something every month and yet this man has not kept his part of the deal. He makes promises he can't keep and ask me to "trust him" but yet he has given me plenty of reasons not to trust him.

The thing is that he thinks he has control of me and he thinks he has me wrapped around his stupid finger. Guess what?! I'm not going that way anymore. I'm done trusting a man who lies to me all the time!! I'm not going to fall under his brainwashing spell. I no longer can be loyal to someone who has betrayed me over n' over and he is proud of it too! But God forbid you do anything to him cuz then you are punished greatly for it. He actually thinks I'm black balling him. LOL   He wanted to know why I never told him. Well I told him cuz "I knew you would run and hide! like you always do."    Does he really think I'm that stupid? He would had tried to "brainwash me" to be loyal to him and to "trust him" as he will take care of things. His lies is his way of escape.

Ok...he has done some good things. I have to give him some credit. He is not a bad guy, he just makes bad choices and one of them is that he ignores Timothy and his excuse that is Tim is not nearby to get to know him. But yet Victor has money to take his fancy vacations and go to his fancy places and makes NO effort to spend time with his son.   So it is his fault that he does not take time for Tim. And what about all the times I took Tim up to see him and VICTOR CANCELLED EVERYTIME I took Tim up.   and his mother's exucse is that "he is to busy to spend time with you".     PLEASE!!!!!!!! don't make excuses for this man!

So...now he vows he will never talk to me again. I laughed at him because he says that all the time and he still callls and texts me. So let's see how long that will be before he calls back.

When he threatened me that he would not give me a dime of the life insurance...I gave him a piece of my mind. Like anything he says really matters and anything I say does not. So this tells me that he does not care like he claims. He is trying to manipulate me with more his threats and lies. I 'm not falling for it again. No more. I'm just tired of it. He is exhasting me with his foolishness.

Wait till his parents and brothers find out that he plans not to attend Tim's funeral and then they are foolish to believe his stupid lies? they believe the asshole!   If this man has any inkling that he does love and care for his son, he will step up and take responsibility and do what he is suppose to.  But the fact he has no plans to attend Tim's funeral and that he has NOT paid child support (he has only paid out for health insurance this year only) will tell you who Victor really is. The truth will now come out- simply because now he is force to pay (child) Adult support to the courts. He is force because he is unwilling or volunteer to do it on his own. He is force because NOW the truth comes out- because he has lied. Because the truth is out that "doesn't love or care about this boy because I don't know him"    What???!!! really?!   Moran!!

I"m also wondering...how much his wife really knows about what is going on? and his in-laws, muchless his family? I'm wondering how much he has lied to them and they are foolish enough to believe him.

And why did it take him so long to tell me he has health insurance on Timothy???? Why?!!! Its his fault he kept his mouth shut! and its against the law as well...because this should had been reported to Medicare and Medicaid and his insruance would had been primary, then Medicare and then Medicaid.   So if they ever find out- guess what?! They will go after him for his decietfulness! Because I had NO clue that Victor had health insruance on Tim. I told him last year not to do it cuz of the pre-existence and yet he still did it and failed to tell me to report it to Medicare and Medicaid.   That is how stupid and selfish Victor is-he listens to no one but himself because he thinks he is above everyone!

I also explained to him that the money is NOT coming to me. It is being directly depoisted into Tim's Special needs trust account. I can't touch that money. He just doesn't get it. He doesn't.

Tim's dad is a very selfish man. I'm not talking about financially (or just)...but as a person. He thinks he is perfect and he has a terrible thing of OCD! He is about Victor and no one else. He has to rise above everyone else and if you don't meet that standard you are not worthy, not good enough.

The way I see it...God is taking care of everything (and Victor is NOT listening Him).

Yes, God is taking care of it!

did I hear something bit him in the ass? LOL

When you have enough Abuse!

2010-11-11T19:12:00.001-05:00

I don't know if I ever talked about this...if so, sorry. If not, guess you are in for some education.

Well let me start that in my childhood, comparing to my siblings, there was about 1 or 2 of us that got the worse of it from my father. And I don't mean just verbal abuse (or even spiritural abuse) or emotional abuse. My father we like to say is an Abuser. He knows he is and seems to be proud of it. Seems that whatever he did to us as kids, he thinks we deserved it.

I'm sorry, but NO ONE deserves to be beaten. I'm not talking about spankings either. I'm not talking about the little petty emotional and verbal abuse either. My father knew how to make us feel stupid and worthless and hopeless. and most of us, he knew how to beat the hell out of you. And the sad part about it, he did it with his 2nd wife and the church folks knew about it and DID NOTHING ABOUT IT!! And the worse part, they think the Bible told them to do all this. It was like being beaten in one hand and the Bible in their other hand.

If you are as old as I am (ok I'll be 50 soon-real soon), and from the "old school" and had parents like my dad, you will know what I'm talking about. Its probably why we have so many social workers now who is so "assertive" about child abuse. lol   know what I mean? But if you are from the old school who had abusive parents like mine, you 'll totaly understand what I'm talking about. Even the folks born in the 80's or even 90's might know what I mean. But for those who might not know (or may know alittle of it), but we had abusive parents back then and NO social services or pastors or teachers or doctors or whatever was NOT called on. IN fact-if I remember right, the 3 years were in Virginia, I don't think we ever saw a doctor or a dentist or even gone to the ER- especially if we were beaten.

I remember once I had to go the bathroom. We were out weeding the strawberry field. did you know I actually got beaten by a hoe by my step mom for going to the bathroom and the neighbor next door with my dad stood there and watched and did NOTHING about it?!!   Another time, my dad was forcing me to apologize to my step mother for something I said. I'm sorry, but I was in my mid-teens at that time and I don't think what I said was rude or disrespectful at all and i got the worse beaten of my life from my dad with an axe handle.   Thank god for my DID to split off so I would no longer feel that physical pain.

Well a few years ago, while at WIIT ( a women's treatment program) I learned from Dr. Bill that I no longer needed to be "loyal" to my abuser (aka my dad). At first I understood what he was saying but at the same time I thought I still needed to be "respectful" to him as my father. But Dr. Bill told me that I just needed to stay away from him. No communications at all.   I sort of had a hard time grasping that I guess cuz I am an loyal person, know what I mean?

Well then, it kept happening. I mean I don't live with the man in fact I live hundreds of miles from him, but he now instead of his fist, he uses words to be emotional and verbally abuse me. and he has no shame. absolutely no shame. I don't even know if he even knows he is doing it. He's been told, but does he care? cuz if he really cared, do you think he would still be abusing us kids who are now grown adults.

Well recently he started for some unknown reason to yell at my sister, accusing her of stuff that she was not at fault of and saying all this shi**.   I was so pisss at him, I defriended him from FB and I totally and I mean totally stopped talking to him (and sadly this may mean stop talking to his current wife too-unfortunately). Then today, he responded to an email that was sent to many family about a future family reunion and he had the nerve to respond with an insult. I was like, "NO you just didn't do that!!"   How dare he talk to me like that.   Is my dad mentally loosing it or is he still an abusive man?

Sadly, this may mean that I just won't call his house at all, not even to talk to his current wife and its not even her fault. But if my dad is going to continue to talk to us like this than I don't want any thing to do with him (or even his wife).  He is gone off the walls and I don't want to be anywhere near that.   I can't tolerate that type of behavioral. It is inexcusable, plain rude and disrepectful to us as adults who have highly treated him with respect.

NOWWWWW!!!! I totally understand Dr. Bill's statement to me!!   I got it back then, but more so now.
Thank God for WIIT for teaching us the difference of a loving loyal parent and one that is an abusive &^#*)##*#^#&*(#( (ok use your imagination there) parent.

The funny thing that on Oprah today, she had Marie Osmond on and she was talking about her son, Michael who committ suicide a few months back and she said that at one point he thought he was a burden to her. And she told him-no. No child should be a burden to their children.   But yet, I think of my father and how he treated all us 5 kids and he treated us like we were a burden to him. So does this mean, that we were really not wanted or was he angry at us or our mother for dying?   Why so much abuse. I realized then, we were a burden to him or why the abuse!

I know I need therapy, but for God's sake, I think my dad needs it more than I do!

Being a "bitch" paid off!

2010-11-06T10:45:00.000-04:00

So I wanted to give you an update.    You can laugh ...with excitment.

As you know a week (or two) ago I talked about how the system fails our children and hoq the child support office has been screwing up and how Victor seems to think he can get away with alot of stuff. right? lol

So yesterday, we were preparing Tim for the ambulance to come to take him to the ER. He was having chest pains and all. I had not gone to my puter to see the email from Dr. Harmon so I didn't see her email about bringing him into the clinic instead of the ER. I missed it...my fault, Ok?! I'll admit to that. But because I had not heard from her (my assumption), I called 911 to send Tim to the ER. Ok..he is ok. it was just cuz he had not pooped for several days so all the air and gases was what gave him chest pains (or what seeem like chest pains). We did get home around midnight. Long story to boring just say it took them over 5 hours to write out the discharge papers.   Yes!! Anyhow...

Anyhow...so while getting him ready I get a call from the Asst. Director of the Montgomery County Child Support. Debbie Hines. She got my fax. She got my certified mail with Tim's picture in it. She told she was really upset how her staff has been and she was moved by the photo. She also told me that the reason they needed us to re-do the General Testimony was because the Attorney 's office LOST the paper work. I told her we were told that you all were updating the files every six (6) months and we couldnt understand since it had only been 2 months since we sent the stuff. This time my Florida Caseworker sent it by certified mail.

I also told her that I sent a letter to the Governor of Maryland, to the Child Support Administration offfice, the senator of that country, etc..etc... she assured me they were going to do something including serve and subponea Victor and she even looked up his income and couldn't believe how much money he was making.

I told her that nothing had changed other than that now Tim is now on a Trach and Ventilator and we sent documents to prove this.   She said she was moved about the photo. I also reminded her that photo was to remind them whom they represent. NOT Victor but Timothy. She agreed but was upset when I told her that one of her staff told me that they were there for the father and not the children. Debbie told me, "no, that is not true" they are always there for the children, not the father as that is what "child support" is really about.

She called me back later and left a message and told me that the Attorneys did get the paper work for sure and that they were working on it.

I did make it clear to them that I will file a law suit if the child support didn't start in January.

I also told her that they will need to "force" Victor to surrender his paper work because he was not willing to volunteer it and he will ignore their request. She understood.

Then this morning (early) i get a call from Victor (responding to my email) that he will take care of Tim's medication co-pays, and not to worry about it. That is great but Victor, he still needs money in his account none of his checks won't bounce since his bills are more than his income. He never responded to that so I need to remind him...again!!

Debbie also understand what I told her about how Victor doesn't want to pay child support because he no longer is a child. Well we all know that. But per Debbie it is considered "Adult child support" due to his disability and Vic needs to understand this.    She also asked me about the Special Needs Trust accont and I explained to her that account will prevent Tim from loosing his SSI/Medicaid since it is allowed.

So...maybe being a "bitch" paid off with all those letters!!!   Let's see how fast they put this all in place now to make it word for Timothy.

So I'm thrilled but still don't have all my hopes up. Know what I mean.

So despite Tim being in the ER...I still had a good day!

....and here's....Betsy!

2010-11-03T20:22:00.002-04:00

I didn't want to forget to do this.

I would like to introduce to you... Betsy.

Ok don't laugh.

Betsy is grayish with some reddish colorish for her numbers. She can be screetchy at times with high pitch "voice" but mostly, I call her our "bitch" that likes to whine.

Betsy is Tim's ventilator. I call her the whinning bitch. Cuz she goes off when we suction him. She

goes off if he is relaxed and sleeping well. She goes off if there is to much air leaking from his trach.

I have to laugh...cuz I always "bitch" at her when she goes off. At first the nurses were confused. Now they laugh with us.

So yeah, we have this "new" addition to our family. Betsy. So folks, you may laugh as we do...but now Betsy is a member and she is the machine that helps Tim breathe.

When democracy fails us...look to God

2010-11-03T20:02:00.001-04:00

The Election day was a day of an event I think for many, no matter where you came from. But here in Florida it was an election on hot wires.

On Monday, I had the priviledge to meet Alex Sink, the elect governor for Florida with her Lt. Governor Rod Smith. I also had the chance to meet up with Senator Bill Nelson and former Senator/Governor Bob Graham. Of course, there were others there too. We were the as the farewell or gish what's the other term for this, but anyway we were cheering her on and praying that she will win as our new Governor.

We needed a change. We needed a real honest change. We needed someone who would honestly make a change in Florida. For the people. For the people. Unlike her opponet, Rick Scott who has been under criminal investigation for fraud, theft and discietfulness and is currently still under investigation. He is better known in all our eyes as a criminal. To think having him in the governor seat would be utterly embarrassing!

I call him the "devil" and now officially Florida is in hell. He won and she conceded if it was a very close call. I say this not because he was an republican, it was because who he represents- a criminal. A dishonest person who stole money from Medicare and then had the nerve to plea his 5th amendment 75 times, fearing he would incriminate himself. Why he is not jail, God only knows. But we do know he spent over 60 million in his campaign. The man bought his way into the governors seat -as if lying was just not enough.

Of course his followers were voting for him and slashing Alex Sink. He was using his stupid tricks to lie to everyone for those votes by saying false things and accusing Alex Sink of things she was NOT responsible for. He had everything twisted so bad and was lying so bad that those fools who believed him of course voted him.

Sadly, he won and Alex Sink who was just 53,000 short conceded instead of demanding a re-count. But if she is anything like me, she was picky about that money spending...so she chose not to spend that money.

While the voting was going on and being counted on Tuesday, I remember getting on my knees and begging God for mercy, for salvation for this state and that it be His will. Part of me feels like God put us down. But then today a though popped in my head. I think God has a better plan for plan for us and we just don't know yet what great things may be coming. Maybe Scott will be impeached (oh please!!). But I have to trust God to please bring salvation and even if right now we don't see it in front of us, it will be reveal to us soon or later.

Oh yeah...guess what. We who were sharing our opinions were banned from Scott's FB page. not allow to express our selves. BTW- against FB guidelines too. But they had no problem expressing their opinions at Alex Sink FB page. So who is really the nicer guy here? Alex was. Scott broke FB rules and banned people that has the right to express themselves. He didn't want us to share the TRUTH to his supporters so he banned us. Do you see how stupid he was? He wanted to shut us up but it was ok for his supporters to be a threat to Alex Sink. Do you see where I'm going. Do you see how insane he was?

I don't know what Alex Sink is going to do, but many of us hope she runs for Senate in 2012. if she does, she will have a large of amount of people supporting her. Alex Sink represent what Floridians are truely about. She has been here for over 26 years and knows the changes and needs. Unlike her opponet who has hardly been here for 7 years.

So I was reading an article this morning and learned why many ended up voting for Scott. Many were being rebellion against Obama because they were not satified with his job. What???!! are you serious? That is why you voted for Scott? How stupid!!! What does Obama have to do with Scott and Sink? to me- nothing! absolutely nothing.

And really, Obama is doing an excellent job. People are expecting to much from him in a very short time. They are forgetting he is fixing alot of Bush's mess and that is not an over night thing. That takes time as there is alot of sh** to fix up. Bush left a big mess. But Obama has done a lot of good in many other things. So many are right, we live in an ungreatful country. People want so much more than what they really deserve. Stop accusing things that is NOT his fault. WE all are to blame. You, Me. Others. WE all need to work together to help make this country succeed. He is one man. He can't do it alone. It's not his fault that Bush screwed us all over and stole from us too! Yes!! Yes he did.

Please understand that I do hate Scott for winning. Its not that he is a republican cuz I can deal with that, but who he really is. Another Bush Another liar. Another theif. another Fraudulant person. Any one who voted for a criminal to be our Governor is guilty of his crimes too because they supported what he did. To me, that makes them a fool.

Infact, I know as a fact that many republican were endorsing Sink because they did not want a criminal in the governors seat either.

Its a sad day in Florida. We are officially in hell now. The devil is ruling. Now it is up to God to bring Salvation and to bring mercy to save us from this hell. To save this state. We are already in the bankrupt mode, now we are really going to be in bankruptsy. Still in the red.

Well I can go on and on, but my Survivor is now on. So I will bite my tongue, hold my opinons and feelings and watch my show and keep praying for this state.

Alex Sink...you are still in my thoughts and prayers and I hope God has a better plan for you if it is not to run our state. God will watch over you.

Out of Darkness, Light!

2010-10-29T08:22:00.001-04:00

So while cleaning out the many buckets of stuff from my storage unit, I ran into a book that I so much admire and adore. I've had the book for year and have always recommend it to many people including pastors of all faiths.

The Book is call, "Out of Darkness, Light!" It is by Richard A Swaney.

The book is about the book of Romans that Paul the Apostle wrote. Paul is one of my favorite Bible characters. He writes with a deep understanding of what Paul is talking about. He totally helps us understand what Christianity is about.

But as I was reading it, I noticed that one word kept popping up. Its like, what are you trying to tell me. ITs a common word that I even use a lot. Trust. It really talks about Trust, what it is and what we need to do with it.

IT is a book I highly recommend for all to read. It really helps me understand the book of Romans so much better. IT clearly talks to you as a person. It also helps us to better understand the difference of the Jews and the Gentiles. He really spits out there and tells you that there is NO difference at all. We all are the same.

I do have a few extra books that I ordered last year, if anyone would like to buy or burrow the book to read. I think many would really appreciate the book and would really appreciate the book of Romans a lot more after reading this book.

It really is enlightening and mostly inspiring.

It is published by the Pacific Press Publishing back in 1975. I don't if it is still out there, but if you can find it, please do get the book. Once you are done with the book, you really would have a good understanding about yourself, life and those around you.

Here is the link where you might be able to order the book:

Amazon.com has one for $5.00 available:
http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Out+of+Darkness%2C+Light!+by+Richard+A+Swaney&rh=i%3Aaps%2Ck%3AOut+of+Darkness%5Cc+Light!+by+Richard+A+Swaney&enc=1&ajr=3

www.alibris.com has one for $5.00 as well
http://www.alibris.com/booksearch?mtype=B&keyword=Out+of+Darkness%2C+Light%21+by+Richard+A+Swaney&hs.x=13&hs.y=14

Abebooks.com also has one for $5.00

Because it has not been published for over 30 years I am having a hard time finding it...so if you really want one, email me and I can send you one of the 3 extras I have for the same price.

But again, its a highly recommended book to read!

Enjoy!

When the System fails our children

2010-10-27T20:35:00.000-04:00

OK...I need to vent. So pleaaaasssssse excuse me for trying to knock of this off my shoulders. But I'm sorry, but sometimes I think people just does NOT use any kind of common sense at all. I'm serious. Really!! God gave us the common sense as a gift to use and I think people just forget it is there to use. Know what I mean?

So I had plans to go visit the child support office this week to see where the case has gone. It has been two months since we submitted the paper work and hopefully by now something was happening but I had not heard. Ok?! Well then I get this call from my caseworker at CSE and she told me she just got a call from the Maryland CSE (interstate case) and they wanted us to do all the paper work again as they need updates every six months. Well, it has NOT even been 2 months, much less six months. So I quickly became angry and was, of course, yelling at the wrong person about this.

We just sent them all this stuff in August and the medical documentations in June (that is about 4 months) So where the hell are they getting the updates every six months???? How stupid is this girl. So I'm thinking, this idiot must have lost the paper work and she was using that six month theory as her damn excuse. How stupid. Hello, we don't have stupid written on our foreheads!!!

So tomarrow we have to go in and show proof of our income again and the doctors have written a letter again of Tim's medical condition.

I did write a letter to the Maryland-Montgomery County Child support office director and I did blast him out. I told him that if we don't see a child support payment in January that I will hire an attorney and file a law suit against them as I'm tired of after 15 + years of asking for a modification from the original order and all they did was sit on this. Sit on this. NOthing done. For 15+ years, Fl CSE and I have constantly submitted paper work to them and they did NOTHING! NOTHING!! I'm so freaking tired of this bull shit.

This child deserves better than that and I'm so tired of them "defending" the father and not being there for the child- and a child with a disability.

I don't understand our system. How can they be so cruel, cold and caless??? How can they not be there for these children. How can they defend this man who does nothing but make excuses and even lies to get out of his responsiblity.

Victor's excuse now is that because Tim is no longer a child, he should not have to pay child support. What Victor does not get, his son is DISABLE and has to have that support for the rest of his life especially now that he has 24/7 nursing care and on a ventilator. Come on man, you work at a children's hospital and you work with sick kids all the time, you should know about this type of stuff and not be stupid or ignorant about it.

This man has known that Tim has DMD and I don't think he has done 1 thing to help Tim out. NO fundraising. No help with medical supplies. Nothing. and he stopped paying child support before his 18th birthday not at his 18th birthday. And then he has the f**king nerve to lie to the Maryland CSE and when they called me on it I told them he lied to them and gave them proof of his lie so that when they asked him about it, he admitted he lied to them.

So, of course, I sent them a letter (like I said before) and advise them NOT to take his word on anything cuz he is a compulsive liar and they should not expect him to volunteer any info and that if they want anything from him they would need to subponed it. I know. I have caught this man lying and then cuz he was caught lying, he lied again to cover that lie and he would keep doing this.

I don't know how this man expects to make it to heaven at the rate he is going. He even lied to his father and told his father he pays child support every month and that they take it out of his pay check. That is a f**king lie. He has NOT paid child support for over 3 years now and it does NOT come out of his pay check. And the worse part is that his parents are made of fools due to his lies!

If they only knew...if they only knew how low ass their son really is. I'm also so tired of his mother making excuses for him. Don't make excuses for your son. He does that plenty on his own!! But don't tell Tim he is to busy to spend time with him. Excuse me? he sure has time taking vacations to go where ever he wants to go...why not take it to visit with Tim????

Victor is a sorry ass father and does NOT deserve to be a father and I really feel sorry for his 2 new kids. Wait till they find out how much of an ass he really is. Wait till they find out that he prevented them to know their older brother. Just wait....it will come back to bite him in the ass.

If you are Victor's relative reading this....the truth is here. Your brother is a compulsive liar. DO NOT BELEIVE ANYTHING HE SAYS. He is making up stories to make him look good and honestly he is the worse father! Anyone that believes anything that Victor says is a fool. He DOES NOT PAY CHILD SUPPORT and has not for now almost 4 years. He has NOT helped with medical. He has not helped with Tim's school loan. He has not helped with Tim's Birthday or graduation or college tuition. He has NOT done anything for this child but make excuses.

Now he has helped with a xmas gift...and has helped with one other gift after Tim begged (asked) him for him. And recently he did help with a few medical stuff but refuses to help with the medical bill. He doesnt care about Tim's credit cuz he thinks that Tim will die so who cares. Hello. Tim may outlive all of us and he may marry and have kids. He may buy a house and his credit does count. Victor may not care about his own credit but don't ruin Tim's due to your stupid theory. Yes!!! This is true. I lie not. And if you ask him...listen to him. Is it a lie he is telling you or a poor excuse? There will be reason to his stupid theories.

Ok...for now, I'm gonna shut up. Now I need to go in my room and just cry it off. I'm sick of this bull shit. This boy does NOT deserve this! But as his mother I have to do whatever I can to advocate on his behalf because he dumb father won't take the time to do it.

Later!

Hoading

2010-10-26T16:13:00.000-04:00

Hoading. We all know what that is. Someone who collects "junk" and just keeps collecting it or/and just piles lots of junk until there is NO room to roam around in their home.

WELL I'm NOT a hoader! I'm not. or am I? Really? Am I? I don't think so...until I started cleaning out my storage unit. Then i realized maybe just maybe I am. I mean I had a whole storage unit of junk...but in a "organized" way and in containers.

As I started to go through these containers I realized what was in these containers. Junk! I mean paper work, but junk mail. Stuff that needed to be burn or shredded, thrown in trash or filed away. I'm an organized hoader!

Fortunately, I have gone through all the containers and have seperate by what needs to be shredded, what is needed for yard sale, what needed to be filed and what needed to be thrown away. My storage unit looks so clean and you can actually walk in it now. Yes!!!

I had to laugh once I was done because in a sense I realized I really was a "hoader" only I was considered a "organized hoader". I really laughed cuz I dont know if there is anything call an "organized hoader". hey...at least I can walk through my house! But all my sh** were in those plastic containers and not all over the house.

So...lol...yes I WAS a hoader...or no maybe I was just the most organized hoader.

But again...I have to emphasize to my therapist...I'M NOT A HOADER!!

So its good news!

2010-10-19T17:26:00.000-04:00

For a long time, my son Timothy had a terrible time gaining weight. We honestly didn't think he could ever reach 60lbs. We, of course, credit this to his muscular dystrophy.

Then in August he had to go on the trach/Ventilator to help with his breathing. The respiritory is one of the issues that comes along with the muscular dystrophy. And honestly, we thought had the progressive muscular dystrophy.

But ever since he has had the ventilator to breath on, he has gained nearly 20 lbs. Gained...not lost!! For the longest time he weighed between 51-57 lbs. bouncing up and down between those numbers. The last doctor visit a week or two ago he was 64 lbs. He is now 72 lbs!

Before the ventilator he had to work harder to breath so it took so much out of him that he couldn't gain weight. Now that the ventilator is on, he doesn't have to work, so he is now able to gain weight.

Of coruse, right now he is laughing his head off, cuz he just saw something on TV where a lady's boobs blew up on her (she had silicon in her).

It's a Mid-October thing!

2010-10-17T11:49:00.000-04:00

Well! Well! Its been an exciting few weeks. Other than the move...lol.

I'm just tired. Hey I lost some weight. But I'm tired of being tired. Have you have had that feeling. I've been trying to eat better, I drink water over juice, tea or pop soda. My back hurts but I keep on going.

I have started to clean out my storage unit. I never realized how much sh** I have until you really go through it. I hope to have it all cleared out the next few weeks. I'm planning a block yard sale and I want to make sure everything I want to sell is out...gone! what I don't see at the yard sale I will try to maybe at the Flea market. But I want to sell all this stuff so I feel better that all that sh** is just gone! no more. no worries to deal with. Know what I mean. There are some stuff I can try to sell on Ebay or Craiglists that is worthy to sell there. But clothes and other miscellanouse stuff. what I don't sell maybe I 'll donate to the goodwill.

I also want to get all this done so I can fianlly start working on my new "office" space. But I have to get rid of this stuff . What is worthy to keep but storage availability then it goes.

What I'm really trying to also do is sell those cookbooks. Gish...I didn't realize that Vegetarian cookbooks are so damn hard to sell. I mean the book is a very attractive book. It has alot of good features and alot of delicious recipes in it. But they are just not selling!! I don't get why. I can't lower the price any more. We still owe the publisher alot of money and I need to get that paid off but I can't unless I sell those cookbooks. I'm already in hot (in the red) with them as it is cuz I honestly thought they would sell right away and then they didn't...and then they DIDN"T. shocking! its not because they are not great books, its just the recession makes it totally impossible too. The publisher just doesn't get it! I mean I have a website, I have facebook, I even have a blog for it. I promote it alot. I go to flea markets. I go to health fairs. I just dont know where else to go.

anyways....lol I need to clean out my van which has buckets of stuff from the storage unit. I need to burn alot of that paper work. Its all over 10 years old and I just don't need to keep it anymore. So its off to work I go...lol. I need some music though and don't know if this nurse will like my music and its volume. lol shall I go for it or be nice and work in "peace". that surely won't motivate me though.

I'll come back later as I know I had alot more to say but its Sunday morning and I"m still trying to wake up. Its one of those brain freeze days.

The Big Move!!

2010-10-06T18:06:00.000-04:00

So we are officially (now) in our "new" apartment. Same address but different apartment number. We now have 3 bedrooms and 2 baths and the cost is less than the 2/2 we were in. People seem to like our 3/2 even if I miss my big kitchen with the many cabinet/drawer space. My dinning room is now in my kitchen and my recliner chair is now in my room instead of the living room. My bathroom is so much smaller.

I started out on Friday afternoon after picking up some dollies from U-Haul. By the time the evening nurse came, I started to haul all the boxes and containters to the new place. Like an idiot I walked it over with the 3 dollies I got when I should had loaded my van and drove it over. I know its just across the street but is surely would saved the pain I endured.

I didn't hit the sack until 4am. Yeah, you heard me right. I can assure you though I was in so much pain with my legs and feet. OMG!! I really needed a foot massage. I was up by 7am when the day nurse came and we started to move stuff we can with the van and dollies. By 10ish, my sister, grand-niece and a good friend arrived to help us move with the bigger/heavier stuff. I had to have the dollies back to Uhaul at 3pm.

My sister, Donna, helped by unpacking the kitchen since she was not really allow to lift anything due to her bad back. She's been having some issues with her neck and back lately and didn't want her to sabotage anything.

My grandniece was helpful by carrying things that you can lift due to her age (5 going on 6).

Travas and I did the rest...really he did the rest. We did use the van for alot of things. But this guys was damn smart and fast and strong...and on yeah ladies-gorgous. He is the same age as my son but he is still hot! to bad I'm not his age.

Andrea, Tim's nurse, concentrated on Tim's room and stuff. My grandniece,Julia, just loved being with Andrea. They seem to hit off.

We got most everything done by 3pm. With the few minor things that can be done with out the dollies. Most of the stuff I can move over as I cleaned.

By that evening, after returning the dollies, eating some pizza I was just pure exhaused...& in pain. I hurt so bad. When I my sister left, I jumped in the bath tub to some good hot water to help relieved the pain. I could't believe how much my feet and legs hurt....& badly.

We had no nurse on Sunday, so I couldn't finish the move or clean the old place. So I spent the day with Tim doing things at the new place, inlcuding putting things up on the walls and emptying 9-10 more boxes. I again, had to take another hot bath cuz I hurt so bad.

On Monday, I spent most of the day at the old place cleaning. Cleaning. cleaning. How exhausting. Plus I had to pain the walls too and look to see what little "repairs" I needed to do. TRavas had taken off thewater filter but I had no clue what he did with it and he took to much off the faucet and i needed to fix this or replace it. By Monday evening, again I was so tired and again still in pain. I was using muscles I had forgotton I had. Plus I was basically moving myself (with the exception of the big stuff Travas helped me with.)

I should had finished on Tuesday. You know the carpet cleaning. But I was hurting so much and really had errands to do. I just didn't have the energy. Fortunately, the day nurse told me about her carpet cleaner she had, so I figured I can save about $70 from that. I didn't get the carpets cleaned until Wednesday.

I forgot to mention...I had to sell my bedroom set cuz there was NO way it would fit at the new place. I had placed it in craiglist and had it sold withing 48 hours and fortunately to someone I knew! lol

So now we are in our new place, my vacuum has died on me...I got new blinds for the old place still looking for the faucet part and got myself a "bed-side) table from the thrift store. Still looking for a chest dresser and will build or put together my book shelf.

Ohhh I discovered that although Wal-mart was advertising some things, they charged me the old price. Tomarrow I will settle with them. Even it means I have to take pictures to show proof i was right and they screwed up.

Well my legs and feet still hurt. We are getting a nurse for tonight since our regular nurse -her daughter had a baby yesterday (3 weeks early) and I figured she would not come in due to that and don't blame her. Maybe she will be around tomarrow. Wanna hear the detail story of why Kasey ended up delivering early. Know it was a girl and was about 5lbs.

Will catch up later, wish I can show you pictures of the new place but I don't see where to add photos. I'll figure it out...somehow! LOL

A Hero

2010-09-29T12:31:00.000-04:00

Here is a "brain storm" writing for the chapter of a book I'm writing for. Of course, most likely there may be some changes, etc...etc..but hopefully you will get the idea! (LOL)

The Heart of Duchenne

A Hero

I had spread the sheet over the hospital bed, as I had helped the nurse re-make a bed for my son, Timothy. As I was making his bed, I suddenly had a flash back of the 80’s as I had worked hard for many years as a “CNA” in nursing homes and private duty nursing. I had gone to college for four years or more to be an elementary school teacher. I have even done some internship. Suddenly I was doing nursing care for the elderly. I couldn’t understand why I was doing this. This was not what I wanted to be or do in my life, but here I was caring for the elderly. Bathing them. Feeding them. Taking them on walks. Taking them to recreation and physical therapy. How could this possible I was doing this type of work when my goal was to be a teacher.

It hit me as I was changing the sheets of Tim’s bed. God had this plan for me. God was preparing me for Timothy. God was preparing me to be his caregiver, not just his friend, not just his mother. Tim was born three years later.

Tim just had spinal fusion surgery for his back to help him breath better. Although he was already in a wheel chair due to his illness, Duchenne Muscular dystrophy, I was now his caregiver then his mother. I was his friend who loved and cared enough to sacrifice all I had to help him survive this cruel world that knew very little or nothing of what DMD was about.

I had been a single mother all his life. I had been caring since his diagnosis at the age of six years old. I suddenly became his voice.I suddenly became his advocate. I also had to be his father, his mother, his friend, his caregiver. I was his ONE voice.

Timothy is now in his early twenties. He has had a lot of challenges but he has also had a lot of successes too. From broken legs, surgeries, pneumonia several times and now he lives off a ventilator with a tracheotomy hanging in his throat so that he can breathe better. He has graduated from high school with a high GPA and has attended one of Florida’s best University’s, University of Florida. Timothy is a fighter. He has chosen to live when life was throwing death at him.

My bipolar has taken me to many places since Timothy’s diagnosis. A few years ago, while at a treatment center, a therapist once told me that most likely my son will only live the next six months. At first I was agreeable but then it hit me. It really hit me. I suddenly found myself weeping. I locked myself up in the women’s bathroom, weeping. I had fallen down begging God to please spare him and to take me instead. I was mentally lost to the idea that my son’s illness could possibly take him into a deep dark world that he never could return from. I was suddenly very angry. I was suddenly very confused and lost. How could I live my life without him? He was my best friend, not just my son. He was the light, the joy, the comedian of my world. I was totally heart -broken. I was frightened for him, for me.I just didn’t want it to happen. But I knew eventually it would, even if I prayed it would not happen until many years from now.

I can recall in 1995 when his teachers in first grade was noticing some unusual things about Timothy. I had noticed it years earlier but thought he was just being a boy – lazy with poor coordination. He had a hard time getting up from the floor. He couldn’t roller skate. He couldn’t climb stairs. He couldn’t play on the skate board. He had large calves. I just thought he was being lazy.But the teachers and the school nurse knew more and suggest he sees a doctor.

I was new at the job. My health insurance was in effect but too soon to take him in. I needed to wait, is what I was thinking. Then I did it. His pediatrician knew right away what was going on and showed me what the book was saying. I think at the moment I was shocked, in denial. No way did he have this. We began the testing process after seeing his Neurologist. From the muscle biopsy- to the nerve testing, it was all too much for me…& him, to overwhelming. Until one day the call came in.

It was his neurologist. I was at work. The call that would tell me there is no cure for this disease and that most likely my son may die by the time he was twenty years old. My son was diagnosed with Duchenne Muscular Dystrophy. I remember feeling totally shock. I remember my mind also going a thousand words per minute. I remember weeping. How can this be? Why Timothy? And how do I tell his father that his only son may die within the next 10 years.

Our lives were facing so many challenges since his diagnosis. Not just mentally, physically but emotionally and spiritually. It became a struggle for us. We slowly watched family “running” from us instead of supporting him. This included his father. It was like our biggest fear was just not his diagnosis but family not wanting to deal with this. It was new in our family we had no history in either side of the family. It was like no one wanted to be educated or know. It was like they were more afraid of the disease then he was.

• ….( insights or other out of the mouth of babes memories)

Over the years I have learned how our physicians, our nurses, our educators, our family, our friends, our community seem to be so ignorant about the disease. I can recall one time Tim was ill, his blood pressure had dropped quite a bit that he was passing out. We were in the ER waiting room, and they were not taking his illness and issues serious. I had to be a real unpleasant to the staff. It was taking far to long. Finally they got him in. They hooked him up to everything. Then they disappeared. For several hours. And then when they did return they didn’t know what they were treating or how to treat it. Finally I had to tell them and asked to call his cardiologist. It was another few hours and although his heart rate was racing about 130 bpm, his blood pressure high and he was dehydrating, instead of admitting him, they discharged him. I was shocked that they knew nothing of muscular dystrophy and how to treat it. He had been a patient here before and they have treated him and flown him into Orlando. Why now they were playing the ignorant game and sending him home? Even his pediatrician was shocked that he was sent home.

Why didn’t these doctors or nurses know about his illness? Why didn’t they want to treat him? How is it these people got medical degrees and were not aware how to properly treat him? I realized more and more that we needed not only more education for the medical field but that our community really needed more awareness. The reason why so many boys and young men of DMD were dying so young was because we were dealing with illnesses they knew nothing about or how to treat it. It was not really the disease killing them, it was the lack of knowledge and proper treatment they needed from their physicians.

I have watched my son’s illness progressed. I have seen how he has struggled with is weight. Unlike many boys, Tim weight was below sixty (60) pounds. A Mickey was placed in him in his freshmen year of college as he had formula as his supplemented for nutrients. It took nearly three years for him to gain 6-7 lbs. He went from 55 pounds that he had for several years, and then suddenly recently he gained nearly 6-7lbs. However, we have learned that the doctors in Tampa and Orlando would not place the g-tube feeding in him. We struggled for years for proper feeding and nothing. Once we moved to Gainesville, his doctors there immediately placed him on the g-tube feedings and he began to have the proper treatment that he needed. I just didn’t understand how some doctors just neglected what he needed while other doctors knew what to do? Were there lack of education and awareness for the physicians in Tampa and Orlando that the physicians in Gainesville knew? To me, it was just common sense.

I have struggled over the years knowing that my only child may pass away from this illness. You will always grieve for your child. You know there will be a loss even if right now he sits in front of you. You try to put those thoughts away and enjoy him at that moment. But it’s like every time he is in the hospital for Cardio or Respiratory issues, you feared this will be the end. To many, it is their worse night mare when their son passes. But so far, I have seen my son fight for his life.He does not want to give up and die. He enjoys his life even it means sitting in a power chair and playing on the computer. I know eventually he may go…but I don’t want him to go. So I fight this disease with him.

I refuse to allow the disease defeat him. I know Tim refuses to allow the disease defeat him. So far, Tim has been extremely good about defeating the illness. I think that despite all Tim’s struggles with this illness, he has succeeded in defeating the illness. I believe that proper treatment and care has been on his side. With the right doctors, the right medication, the right treatment; young men with Duchenne Muscular dystrophy can live a very long time. And there had been many young men with DMD who has proven this.

I am the biggest advocate for Timothy. I am the biggest advocate for moral and peer support. One of your biggest support can be from family and friends, but I also learned that you greatest support can come from the Muscular Dystrophy family. Most of Tim’s family knows he has this illness and his many medical struggles, but in most cases, including his father they have done nothing but run from him. Of the many times I’ve asked them to please visit him, please email him, please support him for his cause, etc…etc… his family including his father has failed to show that type of support. His father continues to run, escape, pretended it has not happen. In his perfect world, his son is not perfect so he can’t tolerate a son who has a “disfiguration” despite how intelligent or how wonderful his personality is.

At first, you might have noticed family and friends being there, but in reality when you need help and need them they are not really there. You might catch a few who will continue to be supportive, but in most cases family will isolate from you, ignore you. Do you know how disappointing and upsetting can be, especially when it is a parent.

Honestly, I don’t know how to keep your family interested in your life, your son’s life, your own family’s life. I don’t know how else to educate them without them deleting your email without reading it. I don’t know. I can just pray that one day that they never experience themselves. I pray one day, that the blind folds come off and the ear plugs removed and their hearts are open to listen. Not to hear what you are saying, but to listen to what you saying.

Tim’s dad ran from him. He abandoned Timothy. Not just once but many times over. He rejected Tim due to his illness. For that, he might have lost his greatest joy in life. Not just Tim’s dad, but his whole family. I pray they will not show up to his funeral with tears. It’s too late to say “good-byes” when you had plenty of opportunities to say “hello” and when you had plenty of opportunity to save him.
Be his hero today.

Be their hero today. Be a hero today…& be there for them during their saddest and their happiest times. They need YOU as much as they need their moms…or dads.

Timothy, you are my hero!

A Book

2010-09-28T20:29:00.000-04:00

The tailgating party on Saturday night was great. We had a great time. Met alot of wonderful people including a Research Cardiologist and a few researchers at SHands/UF. I learned alot from talking with them. These researchers are all researchers of Parent Project MD. The funds we raise goes to researchers as these who believe they can help our boys with DMD. I'm marveled of what they can teach us of the human body.

I was disappointed that many of our family members (in fact nearly almost of them) did not support Tim and this fundraising we did with PPMD. Its like we have family who either does not care about saving him or just doesn't care in general. I pleaded with them to help me save this boy's life and NOT one responded. I know I have a cousing that text the donatiion but I do not know if any of the others particpated. I know many or all of my (so call) friends did not respond either. I know maybe about 2-3 of them did give on his fundraising page and to those who truely cared to help, I thank you with all my heart! I applaud you. YOU are part of our winning team that cares enought to save a life. ITS people like you that does count and makes a difference.

So...I was asked by a DMD mom to help her write a book about DMD, not only to tell our stories but to help educate our community about it. I hope the book falls into many physician and nurses hands. I feel that many of our physicians are very ignorant about DMD. I will let you know when the book is avaiable. I'm sure it will be on Amazon.com.

Tim had to see the doctor yesterday. When we got there, there was NO power in the building. So there was no Air in the building and it was nearly dark. They suggested we go home but these people don't realize how much work it is to get a guy on a vent dressed,packed and placed in a w/c. So we waiting about 20-30 minutes and the power came back on. We finally saw Dr. Stern. We learned that he had edema in his feet. Meds may need to be adjusted. May order a new bed for him. Got some medically necessary meds for his secretions.

By the time we got home he rested before he got up for the day. Then he went to bed...when he got up this am he had an headache and so he spent most of the day in bed.

So now we are back to selling those cookbooks....please tell me you are interested.

I am NOT a Hoader!

2010-09-25T00:14:00.000-04:00

I am NOT a Hoader.

My therapist tells me that I'm a hoader since I have alot of stuff. But comparing to all those I've seen on TV- I'M NOT A HOARDER. At least I can walk through my front door and through my house without climbing over stuff.

Yes I have alot of stuff, alot I have got rid of with no issues. But what it is that I'm not "organized" and that I am working on. But I'm not a hoarder. I don't have garbage all over the place. I don't have over grown mold all over the place. I don't have "shit" through out the house or even in the refridgerator. I don't have shit in piles nor does my place smell.

I had one nurse told me that my house was the cleanest that she has seen so far. And she agreed that I'm NOT a hoarder.

But then my therapist asked me if I can sleep on my bed? Yes!!!!
Do you still have stuff on your bed, like boxes. Yes but I sleep just fine even with the cat!

right now there are boxes because I had packed. Before that was a pile of clean laundry that needed to be put away. But that does NOT make me a hoarder.

Currently my "new" dinning room is full of boxes because we were suppose to move and I didn't have the chance to unpack yet. We are moving next month. Otherwise, I would have a clean & decorative dinning room. But I'm not a hoarder!

I don't need to have some specialist come to my house to tell me how to organize my self. I just need to stop procrastinate and put things away. Things I need. anything else I will dump...throw away...burn or give to the Goodwill.

if I could post pictures on here, I would show you that I'm not a hoarder!

Oh yeah, did I tell you that I'M NOT A HOARDER!

Facebook crashing?

2010-09-23T16:08:00.001-04:00

I finaly finished my HBO series that I didn't get to watch a few years back-Six Feet Under. It took a few months due to Netflix but finally its over. I sort didn't like how it ended. To lame. I think they could had a better end. But it was a good show.

Now...I'm going to watching a few other series I've missed. Weeds. Dexter. Son's of Anarchy (sp?), Rescue Me, Sopranos...plus a few good movies.

I can't get into FACEBOOK. For some reason it keeps telling me that the server is down-error codes. Its acting funny and is slow as molasses if I do get on it. So I gave up on it for now. Is Facebook crashing? lol

Tim seems to be doing super good. He is sitting up in his (new) wheel chair alot more and playing on the computer alot more. Though he needs a new Ram stick badly. But otherwise he is doing good. There is this one nurse we have that I just can't stand. He's an idiot. A moran. A "big-baby" I don't know what else to tell you but just unlikeable and I can't wait till October to be rid of him.

We are moving. Yes. We managed to get a 3/2 for less than the 2/2. The living room and kitchen will be alot more less then here but Tim needs the large room and we need an extra room for all his medical supplies, etc.. and I hope to get rid of the storage room too this next month. An extra $53 a month we can use. Thank God...maybe now we can eat. So we are moving across the street (same complex) next week. Probably Saturday. I'll probably start Friday. I have to rent some dollies though. I hope to find some help before than.

Well...this is the weekend we have been waiting for! September 25. Saturday. The American Football Coach Association -will join Parent Project Muscular Dystrophy to defeat the biggest oppenent- Duchenne Muscular Dystrophy. Together they will fight for our boys and help us raise funds. All we have to do is text CURE to 90999 with our cell phones and donate a small amount of $5 to Parent Project Muscular Dystrophy to bring more awareness, to educate more about prolong life, about proper treatment & care, etc...etc...

We will be having a "tailgating" party at Napolotano's from 4pm -11pm ...lots of good food and music as we make the effort to raise more funds for Muscular dystrophy. We hope to see many there.

Well...its hot. Oprah is on. I want some chocalate ice cream.

Later!

DMD

2010-09-20T14:37:00.001-04:00

DUCHENNE MUSCULAR DYSTROPHY is the leading genetic killer of boys and young men. There is no cure...yet.

But the American Football Coaches Association is doing something about it. Help Your Coach Beat MD.

You can do something on September 25, 2010. Make a $5 donation now. Text CURE to 90999 or go online to www.coachtocuremd.org

COLLEGE COACHES TEAM UP AGAIN IN THE FIGHT AGAINST DUCHENNE MUSCULAR DYSTROPHY

Gainesville, Florida (2010) – Michigan vs. Ohio State. Alabama vs. Auburn. Army vs. Navy. Texas vs. Oklahoma. USC vs. UCLA. College football’s popularity is often linked to its fierce and spirited rivalries. But on one day this season, collegiate coaches across America will be on the same team. The reason? Coach to Cure MD, a national charity project of the American Football Coaches Association (AFCA) that culminates on September 25, 2010.

On that game day, thousands of coaches nationwide in all levels of collegiate football will come together to raise awareness and research funding for Duchenne Muscular Dystrophy, the most prolific genetic killer diagnosed in childhood.

College football coaches are dedicated to the betterment of young men and that’s why the entire coaching profession is proud to be a part of Coach to Cure MD, said Grant Teaff, AFCA executive director and legendary former coach of Baylor University. Our coaches are determined to beat Duchenne Muscular Dystrophy and we need college football fans to help.

On September 25th, AFCA members will wear a ―Coach to Cure MD logo patch on the sidelines and college football fans will be asked to donate to research projects supported by Parent Project Muscular Dystrophy, the largest nonprofit organization in the U.S. focused entirely on Duchenne Muscular Dystrophy.

Football fans can donate to Duchenne Muscular Dystrophy research by either going online to www.CoachtoCureMD.org or by texting the word CURE to 90999 (a $5 donation will automatically be added to your next phone bill).

Duchenne Muscular Dystrophy is the most common fatal genetic disorder diagnosed during childhood and primarily affects boys across all races and cultures. Boys and young men with Duchenne Muscular Dystrophy develop progressive muscle weakness that eventually causes loss of mobility, wheelchair dependency and a decline in respiratory and cardiac function. Currently, there is no cure for Duchenne Muscular Dystrophy and limited therapeutic options exist.

The financial service firm TIAA-CREF has signed on again this year as the national sponsor and will donate air-time on September 25th for a Coach to Cure MD commercial featuring football legends, Jim Tressel and Rich Rodriguez.

Last year, over 2,675 college coaches participated in the inaugural Coach to Cure MD event. Teaff said he expects an even wider cross-section of coaches to participate in the program’s second year. Families affected with Duchenne Muscular Dystrophy will also gather for fund-raising tailgate parties on campuses around the country to encourage more fans to get involved.

We are thrilled to be teammates again this year with the AFCA for Coach to Cure MD. The commitment of the coaches and universities that are participating is truly inspiring. We are taking a comprehensive approach in the fight against Duchenne—funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options,‖ said Pat Furlong, founding president and CEO of PPMD. And with the support of the AFCA and college football fans everywhere, we are confident that we will end Duchenne.

About AFCA

The American Football Coaches Association was founded in 1922 and is considered the primary professional association for football coaches at all levels of competition. The 10,000-member organization includes more than 90 percent of head coaches at the 700-plus schools that sponsor football at the college level. Members include coaches from Europe, Canada, Australia, Japan and Mexico.

About PPMD Parent Project Muscular Dystrophy (PPMD) is a national not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy. The organization’s mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education and compassion. PPMD is headquartered in Middletown, Ohio with offices in Fort Lee, New Jersey.

For more information, visit www.parentprojectmd.org.

Need to sleep

2010-09-18T01:48:00.000-04:00

I can't sleep. I have so much rushing through my head. My head hurts. I need to sleep but at the moment I just can't sleep. I have this head ache too on the right side of my head. I should had gone for the MRI I need to reschedule it.

I wish all the shit in my head would stop and let me sleep. Its dark deep thoughts.

I need to sleep. I want to sleep. But I can't get these thoughts out of my head.

Maybe some tea. some herbal tea. i don't know. myabe it no longer matters.

I would like to go out and scream. I need to scream. I should scream. who cares who hears me.

maybe I should brain wash myself to sleep.
maybe I should take those pills. it will put me into a dark deep sleep.

Welcome Home!

2010-09-16T23:49:00.000-04:00

We are home!!! yah!

We got home last Friday and it seems like everything has been going well other than a nurse I can not stand is back on the schedule. You don't want to hear what Tim say's about it. LOL Loud and clear "dumbass"

I found out I had a package when we got home so I went to get it from the office and then I realized where it came from. I have finally got the kit for the COACH TO CURE MD...the banner, postcards, stickers and fundraising boxes along with posters.

I started to figure out where I would have this fundraising...thinking I can have it at UF only to find out that UF won't let us have it there anyhow due to some policy they have. So I thought, let me try to put a "tailgating" party together at some restaurant. I made one call to one Restaurant and shockingly she said "yes!!" we figured out what we wanted to do and put the plans in.

I did alot of face book promotional on it and suddenly I got an email from Gainesville Sun. They plan to do a story about the party and the event while katie is finishing story she started 8 months ago. So it may be a companion story.

We had quite an eventful night. Tim's ventilator kept alarming off. We didn't know if the machine was going wacky or Tim was actually having difficult with his breathing. We finally came to the conclustion that there was a leak. Lori, the RRT, troubleshoot the ventilators and there were no leaks or issues from either vents. So we ended up taking Tim in and he got a new trach. it was disguesting to see that hole! Uck!

So on September 25, we are having a "tail-gate" party at Napolotan's italain Resturant from 4pm -11pm for the Coach to Cure MD and hopefully we can raise more money too. There will be plenty of food and good music!

Hope to see you there!

Coach to Cure MD

2010-09-09T22:11:00.004-04:00

I know its only a few weeks away. That is September 25. It will be one glorious days for all High School and Football players and coaches. They will be participating in a wonderful thing.

Coach to cure MD- MD as in muscular dystrophy. It's a game we all can be part of and help save the lives of thousands of boys who suffers from Ducenne Muscular dystrophy. Are you a player? Do you want to be part of a winning team.

In the past 2 years, they have raised a total of $500,000 from this event. But on September 25, 2010; we hope to raise the $500,000 in one day. I think we can do it. Do you? Sure you do, because today you are going to participate. Today you are going to be part of that winning team. Not just your football team winning, but you too.

Duchenne Muscular dystrophy affects 1 of 3500 boys. And each day, a boy is diagnosed with it. Most of the time you don't even know they have it until they are 5, 6 or 7 years old. My son, Timothy was diagnosed when he was six (6) years old. It was devasting to me that my own son would be affected with this disease. My beautiful baby boy. It could not be. Why Tim? But it happens. It happens to families who have never been affected with it or has any history of it. But it does happen.

We are strong believers and supporters of Parent Project Muscular Dystrophy. Their work is of parents working together not only to find a cure but to help bring more awareness, more education, and the most important thing is to find a cure.

This year, we are participating in the COACH TO CURE MD. Our goal is to raise $1,000 and as a team to raise $2500. But we can't do it alone. We need YOUR HELP to make it possible. Without your game plan participation would make it impossible to reach our goal before 9/25/10.

So this is how you can help. Hopefully, to honor Timothy you will contribute by going to our fundraising site (http://www.parentprojectmd.org/goto/TimothyBird)
or you can text CURE to 90999 and a small $5 contribution will be made.

You can also share this information with friends and family and hope they too will want to help and play the football game by contributing.

Be a team player. Let our ONE VOICE and our ONE TEAM be the winning goal to a better life for these boys and young men.

Coach to Cure MD is associated with Parent Project Muscular Dystrophy. Parent Project Muscular dystrophy is a 501 C3 Non-profit organization and all funds are considered tax deductible.

There are no "Good-byes" in this household!

2010-09-06T20:33:00.000-04:00

It's been an eventful day here at Shands. Just as we are ready to think we are going home tomarrow, we discovered that is just isn't going to happen.

Tim's blood pressure has been decreasing alot...too much. Over the weekend his oxygen level kept dropping to 84 and when awake. That of course alarmed everyone. Then today, he had a fever of 102. Before we knew it, his blood pressure kept dropping to deathly low. Finally they decided to do a pic line and while doing his pic line, Timothy crashed! His blood pressure kept plunging and his heart rate increased higher and higher-above 150.

The funny thing was, he looked ok. He acted ok. At first we thought maybe it was the b/p cuff. so we moved it around. It did nothing different. then they put IV's on him and it looked like his blood pressure was increasing to the normal numbers. But then it crashed again.

The room was full of doctors, nurses, RRt's and of course xray techs. There was just to much going on. Thankfully now he is stable. he is trying to sleep which is needed but he is afraid to. He also has the "Redman reaction" from an anibotic they put on him. He is still red from it but its slowly going away.

I blame Maxim for all this. If they had got us out of 2 weeks ago like they were suppose to, he would had not picked up this bacteria from the hospital and got sick. The nurses and doctors agree. We should NOT be here. Tomarrow I'm making alot of calls and I think one of them is for sure a lawyer!

I know my son is dying...slowly. But I don't think I'm ready to say "good-bye" and I don't think he is either. There are NO good-byes in this household!

Mount Ellis Reflections ...by Cynthia

2010-09-05T19:58:00.000-04:00

Here is a blog of someone who wrote about an experience many of us went through last week while at Facebook with Kolhs Cares....it was just pure awesome. I kept hoping and praying to be the top 10...and we made it!

Mount Ellis Reflections

When we ask God for a pebble, He goes all out and gives us a diamond, and that's exactly what happened at Mt. Ellis Academy.

I can't begin to put into words what having been a part of their miraculous 10th place finish in the Kohl's Cares Contest means to me. Everything from the time in my own life when it happened, the prompting I felt in my heart to vote and put it in the paper, the 144,000 votes and so many other details speak of only one thing: God's hand guiding each and every detail of our individual and collective lives. Truly, all things do work for good to them that love the Lord.

I'd seen the voting on Facebook for a while and eventually read up on the contest and voted and thought that was the extent of my involvement. On Wednesday morning, as I was working on deadline, someone posted the voting link and something inside me clicked and I realized at that moment that if I didn't use the power of the pen God has granted me, I would never be able to live with myself. If God put me in a position to reach 40,000 readers each week, I could not pass up this opportunity to help Mt. Ellis. It so happened that it was my week to write the opinion piece wherein I'm free to express myself on pretty much anything and I felt convicted to do it. My column was already laid out and about to go to print but I asked for it back and took out parts of my commentary on a controversial issue in order to make room for a few sentences about Mt. Ellis.

While an opinion column is a forum of free expression I did have concerns about including Mt. Ellis for several reasons, one of the main ones being that it was so far out of our coverage area and might raise questions; Why was I writing about a school in Montana? I felt somewhat like Queen Esther going before the king uninvited but I also said, "If I perish, I perish," which in modern terms could be translated into "Whatever happens, happens." I just felt convicted to do it and let the chips fall where they may. After the paper went to print I told my boss about it and being the amazing person she is anyway, who by the way also voted for Mt. Ellis because she saw it on my FB page and because I asked her to, she was very ok with it.

I'll never know how many of the votes came from my readers, but it doesn't matter; what matters is how this little school has garnered so much love and support from so many worldwide. While some compare it to David and Goliath, I see it a little differently; I see it as Gideon defeating an army of thousands with only 300 men. In this battle God was very specific in requiring only 300 men so that their victory would be an unmistakeable manifestation of His power. Same here. The fact that a tiny school of 70 students in a remote part of the country not only won with an outrageously high number of votes but that much bigger, big city schools barely had 100 or so votes is truly a very powerful testimony on many levels. And the 144,000 plus votes is not only symbolic but nothing more than God placing His signature all over this amazing story which will be told for years to come. MEA actually got more votes than that, but the 144,000 was what showed on the board long enough for us to see this number just before the entire page closed at the end of voting.

The most beautiful part about all this not only that it's a wonderful testimony for Adventist Education, of which I am so privileged to be a product, but also how it united us all as a church. New friendships were formed, and everyone pulled together in prayer, voting and simply in Christian love and unity for one common goal which will have far reaching effects beyond a new sewer system for the school. For me, it was just one more reason to feel so privileged and blessed to be a part of the worldwide Adventist church which I love dearly and believe in with all my heart. I'm also moved by the incredible way that so many other academies, including Upper Columbia from what I hear, who was in the 30th spot, and even some of the already top 20 schools came together to share part of their votes for Mt. Ellis.

And speaking of Upper Columbia, finishing so high even without prize money is an extraordinary accomplishment and speaks volumes on your school's faithfulness, passion and dedication too and that kind of spirit of collaboration, hard work will be rewarded. And I also heard, though not certain, that you also helped out Mt. Ellis with votes. If so, your spirit of unity and sportsmanship will be rewarded if not directly with the $500,000, in another way and you have every reason in the world to rejoice. So big kudos to you too Upper Columbia for placing so high and for your great spirit of sportsmanship and brotherhood.

My prayer now for Mt. Ellis is that God grant administrators a triple dose of wisdom and Christ-like constraint in handling these funds. May each penny be put to the best use that will benefit students and bring honor and glory to God. I encourage everyone; admins, teachers, parents, staff, students and all who voted for MEA to start praying now so that from day one, the money is used wisely and each cent maximized. I also pray that tithe and a meaningful offering be a part of the plan in managing this extraordinary heaven sent gift.

So for many Adventists worldwide, Saturday, September 4 was a doubly "Happy Sabbath" morning. There are so many other things I could say about what this means to me personally, what it means for Adventist education and the church as a whole, but like everything else God does, sometimes there just aren't words to explain and the few that could be used would not do it any justice. Let us all simply rejoice, enjoy new friendships and connections continue to pray for each other as friends, for our schools and our beloved church from now until Jesus comes back.

Much love,

Cynthia Mendzoa
http://holyandacceptabletoyou.blogspot.com/2010/09/mount-ellis-reflections_04.html

The Will to live- part 1

2010-08-30T17:52:00.000-04:00

While answering one of Oprah's Facebook questions, I ran into a sister of a boy who had duchenne and she told me her brother died at 17 & at home because he was always in so much pain that nothing matter but death.

I had wondered how could there be so many boys out there with Duchenne musuclar dystrophy who suffer greatly that they think the only cure there is to the pain is death. Yet, there are so many young boys and men who just fight to exist, much less the pain or no pain at all.

What gives these boys/men the will to live? Are they in pain and is just hiding it? Do they really have a hope for a cure in their life time they just don't want to miss that opportunity? (I know I would!) or are they still just enjoying life so much that nothing seems to matter?

What really gives a boy the will to die? How much pain are they really in the whole time that no one and nothing matters but "death" to cure the pain? Did they loose hope?

Right now, becasue we are in the hospital, Tim just got a trach and living off of a ventilator. He is complaining of alot of pain in his right chest. We, of course, believe it is just muscular. Culture showed nothing and hopefully so will the xray. All we can do is give hime something for pain, including morphin and the hot/cold cream. But I have wondered how much is Timothy really in pain before the Trach? I mean, this boy is a fighter and has NO desire to die. He is in all his medical decisions and even chose to have cpr knowing the rist of chest compressions can break his ribs and maybe even punchier his lungs. But he seems not to care, he does not want to die. However, I don't want him to live like a vegetable either.

What gives the Tim the will to live-despite the pain? does my son have that much hope for his life that nothing matters? Is he really experiencing other pain that he hides from me?

How about your son who many have DMD? Would you want to know how much pain he is. Of course, you want to help him, right?! But why would he hide it from you if he is in pain and says nothing? Or does he? How do you treat him for the pain other than medication? Or has your son reached that point of pain? Would you talk to him about it?

DMD has been known to take lives before they reach their 20's...and many has lived beyond it. I am going to ask the young men (who are now in their 40's with DMD) and ask them about their pain level and how they live with it. See what thier level is like to want to live?

I hope to have more and better answers for you soon about this as I am more curious as I hear more about it. I am also hoping this can be an answers to help our boys who live with chronic pain...and those who don't.

Does your son have the will to live? If so...why? I know there are many good answers out there that hopefully can be very helpful to many more boys with DMD.

To many questions to answer but maybe answers that can give us hope!

Sleep and movies

2010-08-30T14:18:00.000-04:00

I can't believe it is already Monday August 30th. Where has this month gone. I just know I'm so tired of this hospital and pray we can go home this week. I spent the weekend sleeping or watching Netflix instant movies. I think I watched about 10 of them already.

Tim is doing better, he just started to complain about chest pains again. They said they can hear something going on in his lungs so they ordered a chest xray and they are gong to do a culture on it too. He will sleep if they give him something, otherwise he won't sleep at all. Which is not good. He was up all night again but they were suctioning him alot. Hopefully he will not have pneumonia.

I just want to go home. Stay there and not come back here. His dad stopped calling. Out of the blue he stopped calling. I don't know what is up with that man. He acts like he cares and then just stops calling. He doesn't even text message anymore either. I don't what to expect out of that man at times. I hate his empty promises that he seems to can't keep. I hate it when he says "trust me" when he absolutely can't be trusted. Then he calls every day and suddenly he just stops.

I'm tired too. I do this 24/7 ...but do you see me running away? Do u see me stop caring? and all he wants to give me is maybe $5k when the boy dies?? what have I done for this boy that this man has NO CLUE.

So...lol I had an idea but won't reveal it here. Probably never work anyhow.

Anyhow....watching my soaps. Hope to get Tim up out into his chair today if he'll let us. told him he needs to get use to it when he gets home to get up on his computer. hahahahaha....Tim is so unpredictiable!

later!

Is God telling me something?

2010-08-25T13:44:00.000-04:00

I'm beginning to think that God does not want me to have this surgery!

After a restless few days, nothing to eat and doing all that poop they want you to get rid of...I arrive at the hospital this morning around 5:45am just as the doctor said. I got called back, changed my clothes, had blood work done, the IV put in (which hurt by the way!) the leg sleeves put on, got rolled down to surgery...saw the doctor and then the anthesialogist (sp?) comes in and all hell rises. The lady refuses to let me in surgery because my sugar level was to high and to risky for them.

Now...when I was upstairs, making the changes, iv's, etc...and they did blood check then and knew it was high; why didn't they say something then instead of taking me all the way down to surgery?!

I'm fustrated as this is the 2nd time my surgery has been cancelled and needs to be rescheduled. The Second time! #2! this is ridiculous!

However, I can assure you that I did go someplace to find something to eat! What a delight!!! food never tasted so good.

But I'm now wondering if God is trying to tell me something and I'm to ignorant to hear His voice. Is there a reason for all of this? If so, what can it be? What is it that He wants me to listen to Him about. So as you can see, I have alot of talking to do with Him. We need to have a board meeting and do some discussions.

When situations like this happens in your life...situations suddenly changes at the last minute and you are not always sure why, have you asked Him why? What is it that He has plan for you?

Will they call?

2010-08-24T17:15:00.000-04:00

I'm soooooo damn hungry!! I want this surgery to be over with so it would only mean to be closer time to eat again...& I will enjoy every minute of it.

I've gone to do what I'm suppose to....the clear liquids...drink the stuff...drink the tea....drink the juice...eat the jello...and boy have I ever "pooped" sicking, ha?

Tim has slept most of the afternoon. Probably he'll watch his D Gray man (animation) tonight.

I have let family know the number to call lif they need to check on him. I don't expect family to ever call me to check on me...much less anyone to visit me. I'm sure there will be no flowers or ballons either. No hope for it. It doesn't matter, I know -to them I'm not worth it. Most likely when I come back, there will be no calls for Tim either.

So I'm wondering why am I really having a funeral for him?

Well....I'm going back to my tv shows. I'll be back Thursday or Friday.

Bye for now.

Missing Mail

2010-08-23T17:23:00.001-04:00

So I am on a two (2) day clear diet for the surgery I'm suppose to have on the 25th of this month. I hate it. I'm so damn hungry. I can't stand it. I want something to eat.

I went to Publix to buy some jello, juice and broth and I did buy a smoothie. I know...bad me!! hey I'm grouchy- I don't get to eat. Blame the doctor for that! (hehehehehehe)

WE are still at Shands, week 4! I want to go home and so does Tim but Maxim seems to be taking their time. I've been calling every day harrasing them. Maybe I should threaten them to pay the bill.

He is still mouthing his words and we are trying to get him to talk. He has his schedule around and is up all night and sleeps during the day. he is telling me I am not doing his suctioning right for his trach. I'm not doing any thing different then the others. But what can you say to a boy who I think is like his dad- OCD!!!

My surgery is schedule for this week. Wednesday. She tells me I'll be in for one night and I'm out. Out!! then I'll be "FREE" from the monthly visit of Aunt Flow. And mostly the pain.

Today I went to the house and did some unpacking. The living room is done. Tim's room is done. His bathroom is done. I'll be working on the dinning room and kitchen when I get back home. It will be nice to get back to some normancy-you know?! LOL I want to do some "re-decorating" too. The living room and maybe the dinning room. I just need to clear out the storage unit and throw away alot more stuff.

I can tell you right now- when I leave the hospital this week from my surgery...I'll be EATING!!! yes its my weakness, who cares at this point! but hopefully I would had lost alot of weight too.

I've also been dealing with the post office. Apparently my mail from August 6-August 18 is missing!! where is my netflix? where is my other mail??? the guy at my current location says he doesn't know what happened to it and the guy at the new location has not been deliving it. so where is it? who is watching my movies and reading my mail. I went down to the main post office and talked to a supervisor. He said he would look into this as now he too is questioning to where mail gone too.

Well.... thank you all for your prayers and thoughts.

Now get me a real delicious homemade meal!

He is sitting up now!

2010-08-17T11:41:00.000-04:00

Tim sat up for about 45 minutes yesterday in his wheel chair. He looked better and he seemed alot better too. He also spent a few hours watching a movie on the Netflix instant, inlcuding watching a few shows on Hulu.com.

Today, he is doing ok with the exception of some pain in his chest and back. We hope to get him up again soon to sit in his chair. Maybe I can have him watch another movie while sitting up.

I slept in to about 10:30 -got a good night sleep. Hope to get something done today. Remembering that next Monday and Tuesday, I can't eat anything. Suppose to have surgery next Wednesday and since it looks like we may still be here. My sister Donna is suppose to come and sit with him while I'm in the hospital. I got to drink all that stuff...blah!

Anyway...he is doing better. Can't wait till we move back upstairs. This unit is just wierd. Still have anxiwty about being here.

Nothing else going on for now. Will be back later for more updates on this thread.

Later!

When to Say Good-bye

2010-08-16T08:36:00.001-04:00

I recieved a call from Tim's dad, Victor, the other day. For some unknown reason he wanted to talk funeral arrangments for Tim. I actually was not ready to talk about this at all. Tim is such a strong minded kid, there was no way we needed to have this conversation-at least not now. Besides, why did he care? He has not seen Tim for 13 years and instead of spending time with his son, he seems to just run...run...run. I can't even get him to help with some of his medical needs, why suddenly he wanted to talk about Funeral arrangements.

So I met up with a funeral director to find out the cost. Tim has a $12k life insurance, so would this be enough for him? Surely. I mean the plan he would be creamated-but I wanted to make sure he also had a funeral. After all- he deserved it. His father just wants to bury him and get it over with. Easier for him to say- he does not have that connection with him like I do. I don't think he understands what it is like to loose a child. I don't think he understands what it is like to watch your child to slowly die. He has NOT been here for Tim during this whole time- he surely knows what its like to be "irresponsible" - to run from Tim instead of being there. So for him to tell me to just creamate him and get it over with to me is totally irrational.

I realized the cost will be almost $7,000. Creamation after a funeral. I can just have a memorial service after the creamation. I can. But I won't. Tim deserves a little more dignity then that. I'm not like his father and to most people, like myself, we need closure.

I did not have closure with my mother. I really didn't have closure with my grandmother (paternal). Yes there were funeral (for my mother I was not allowed to go-blame my dad for that)...and a memorial for my grandmother, but that is NOT the same. For some people they need to feel or see the body for that good bye. I understand not everyone is the same about "closure" but you have to respect those who does need to have that type closure whether you agree with it or not.

So...I decided we are going to have a funeral and I hope that all his family and friends will come and say their goodbyes. I don't want to hear excuses. People had plenty of time to come spend time with him when he was alive and I heard were excuses. I'm so sick of excuses. I'm tired of people blaming me on some things. What does that have to do with Tim? No one really comes to visit him. Shocking his grandmother came once to see him. But she only stayed for 20 minutes and then left. What kind of visit is that?

I want his dad and uncles to be pallbearers to go in and his counsins/frinds to be pallbearers going out. I want people there to have hands on- to say their good byes. I don't want excuses from family or friends.

Tim has gone through alot in his short time that NO ONE should go through. He has stuck it out. Through thick and thin. He has been one courages and brave young man for all the pain he has suffered from this disease. Whether you like what itdoes to him or not, have the decentsy to show up and show some respect for him...if you can't do it while he is alive and vibrant, then at least do it while he is in his eternal sleep.

I know people hate death. WE all do. Its an end to a life that has been precious to all of us. We don't like it when a love one dies. We know they will be at peace and not suffer anymore. But that is NO excuse for people not to come visit him.

I don't want to say good bye to my son. He is my best friend and we do things together including agreeing or disagreeing on things. You think I like this? You think I'm enjoying this? You don't know how many days I sit back and cry my eyes out. This is NOT as easy for me as people think. Maybe his dad can get away with it, but I surely will not.

When are you really ready to say good bye to someone. Would it not be better for people to do this when someone is alive then to wait till they are dead.

I don't expect my aunt to die soon, but she has gone through alot and mentally she is slowly going away. So instead of waiting till she is gone, we gathered for a family reunion for her in July so she can spend time with family. i don't want any "hello's" at a funeral when there were plenty of opportunities to do it when people are alive.

My son's father may be ready, but I am not nor is Tim.

I hope Tim's family and friends has the courage to come and see him while he is still breathing, if not, at least show up to say your final good byes. He may not know you were there, but he will know in time who was truely his family and friends. His family and friends. Funny my son's father asked me if any one was gong to show to up for Tim's funeral. What kind of stupid question is that?

At first he gave me and the director the impression that he was not going to show up. It was at that moment I felt even his family on his father side would not show up either. I got to thinking what kind of people are these to not show up for something like. They can't be that cold?! Victor gave me the impression he was not going to come and I was about ready to yell at him for not showing up at his own son's funeral. What an idiot that would be if he didnot. Its bad enough you are not there for him when he is alive but not to show up for his funeral. Then he did say he would be there. If not, all hell will rise!!

I'm not quite ready to say good bye to my son, and Victor, nor should you! No one and nothing is stopping you for seeing him while he is alive now- only you are the only one making that choice. He does NOT have a contagious disease. He is not a cold heartless person. He may not have the riches you have but he is a person with dignity and respect and enjoys his life.

When there are no good-byes is when we all reach heaven. Until then...i say my hello's to him every day! Yes- my Hello's!

Hello Timothy- are we having a joyous good day- today?!

**** Other news*****

Suddenly at 5am this morning they moved us to another ICU-what I understand is temporary. I don't understand the whole situation but we are now on the 8th floor instead of the 11th floor.

He is still in alot of pain, his head, chest, arm and back. I'm hoping the medication is helping. He is currently sleeping and all I know I want out of this hospital. They want me to wear this stupid yellow gown to be precautious however they don't realize that wearing that 24/7 is not only going to be hot but I just have patient contact like they do. no matter where I go or do, it will be on me. If i was to go to another floor or wherever I'll have it on me (whatever it is they are afraid of). I'm standing my ground on this!

Well he calleth me...be back later!

Painful Memories

2010-08-12T21:12:00.000-04:00

So another day has come. Tim is still complaining of pain in his right lung. At first we thought maybe it was the contral line put in so they re-did it, but it did not make a difference.

Dr. Harmen ordered the cat scan, but nothing showed up. So we are thinking it is muscles that he is not use to using on his right side and now that he is on the ventilator that it is pushing air-using muscle he is not use to using. The doctor is ordering a heating pad for the heat compress that is he is requesting to see if that will help relieve the pain.

He is on morphine for pain, but he is also on another pain medication too. Seems that the morphine helps a little.

We found out yesterday/last night that the nurse for the day shift did NOT give him anything for pain the whole 12 hour shift she was on. Why, I don't know but I thought she was since she was giving him other medications. I was so pisss about this and the doctor over heard me and hence why she decided to put him on morphine as well. How can you stand here, hear and see him complain of the pain and don't give any thing to him. Its ridiculous! its like the one nurse that said it was "quiet time" and why he did not come in to help Tim when he needed help during those two hours. How stupid of an excuse is that?????!!!! I am for sure going to file a complaint against the two nurses.

We have one nurse that we love to death. She is so funny. She is from the Phillipines but she she is so fun to work and talk to. She is also so good with Timothy. But she knows what she is doing and is very attentative.

I saw the neurologist today for the numbness on my right side of face/arm plus the memory loss on some things and he is ordering a MRI to rule out MS since it runs in our family. I seem to have some syptoms of it too.

My sister and nephew (Donna & Dareck) was suppose to come today. It is now after 9pm and still nothing. The last I heard Dareck was not coming nor was Julia. Donna....well she is suppose to be near by. I think.

It looks like we are not going home as soon as I had hoped. I hate this place and mostly I hate the food court. I am soooo tired of eating out and I'm craving for a good home made food. I'm dying for a good home made food!! nothing like a good cabbage/potato soup.

Later!

Its a Waiting Game

2010-08-11T10:11:00.001-04:00

Its a waiting game. It seems like no matter what we do in life, we are waiting. Waiting in line for something. Waiting for a doctor visit. Waiting for food. Waiting for something to be delivered. Waiting. Waiting. Waiting.

Do you have get tired of just waiting? Its like now n' days if we can get it "instantly" we would find a way to get it. You know the saying, "when there is a will, there is a way" to just get it.

For those who may be suffering, their waiting period seems to drag out. Waiting for pain medication. Waiting for some relief. Waiting for the doctor. Waiting for their meals. Tim lays here waiting for the nurse. Last night around 3am...he told me he had not seen a nurse for 2 hours! Two hours. And the nurse excuse was that it was "quiet time" and my response is, "so you let your nurse suffer during that time?" come on...people who are in hospitals are sick and suffering. They should not wait for 2 hours to get some kind of relief. That my friend is NOT quiet time.

Tim is complaining more n' more of pain in right chest side. The doctor upped his pain medication and ordered another chest xray. He is sort of talking now but still mouthing alot of stuff and using his alpha chart to spell out words. He is still using his suction machine for the extra secretions in his mouth. They gave him somethingfor it(a patch) but its just not working. Dr. Harmen is not sure why it is not.

He seems to be be more hyper sensitive to everything since it all surrounds his breathing. Today, Lori-his RRT from Barnes is coming in with the new ventilator to start using it and get use to the settings from it. So hopefully we can go home on Friday.

Financially,this is killing us. We have several utility bills we were behind on. I went ahead and paid one of them today but don't have enough for the other two. Tim also wants 24/7 nursing care now, so that means financially it is going to kill us with one of the utility bills. On my disability income, I just can't do it. I've thought about going back to work part time, but the pain I am experience with my hips, knees and feet would be unbearable. I hardly can stand sometimes now without the pain. Plus, it may hurt Tim's SSI and Medicaid as well.

I have been trying to set up a SPECIAL NEEDS TRUST ACCOUNT and still having difficulty doing that at the moment. I wanted the child support to go into it so that it can pay of these ulity bills and purchase the medical stuff he desperately needs. But there seems to be some folks who don't get this and refuses to help. I would like to smack them, but they are to distant to do so. So I'm going to pay for the $10 and build a special needs account by asking for donations with friends and relatives. I hate to, but what I am suppose to do. The special needs trust account will NOT affect his SSI and medicaid or anything else he needs with the government. however, there are alot of things that is not covered by the state that is out of pocket expenses. He as a few now that I have put my medication on hold to make sure he gets it. I've asked his father for help including paying a bill and the man seems to be ignorant of the needs and bills that has to be paid.

So...its a waiting game! Waiting to get things done because some circumstances just won't get done.

It's a waiting game {sigh}.

***UPDATE***12:50pm**** Tim is still complaining of a lot of pain in his right lung. He just advised me that he feels like he is breathing in one lung only. They just did a chest xray again but think that a cat scan or MRI needs to be done that maybe can't be seen in the xray. He has been consistence with this pain and issues and don't think the doctors are taking him serious.

I might need to do a good talk with them to see what can be done to help. Medication is not helping much. He needs sleeps but so afraid he will never awake from it. He is not at peace with dying at all.

Chest pain with bloody spits

2010-08-09T14:07:00.000-04:00

Of course, we are still here in ICU. Tim's surgery for his trach and central line went well. He is, of course, complaning pain, mostly in his lungs and throat. He is still bleeding including spitting up blood.

He has complained to the doctors and nurses of the amount of pain he is in. They have given him pain medication including tylenol. His abcess on his buttocks is still gone but may still carry the Mercer bacteria so they are being a bit careful on this.

His CO2 level was high but has gone down since they have put the trach in. Thank goodness, with his dad as a RRT (registered respitory therapist) we can get alot of advise from him. If his Carbin Dixoide level has not gone down, he could have died from it. But the trach and being on a ventilator has brought it down. Now to get over the hump of the first few weeks and get his voice back.

Speaking of voice. Although right now he can't speak we did get a list together in which has not used yet. So far we are reading lips or using an alpha chart that he spells words from. Its been mostly his pain in different areas and dealing with the blood.

We only had one visitor, Katie, the reporter from Ocala and a very good friend. She was here for a little bit and had to leave but now is heading to Illinois. Always so lovely to see and talk to her.

I finally got him to lay on his side so that he can rest his butt. for a while there I thought he would never turn over. We also got the suction machine to sit on the side of his face/mouth since he is in need of constantly suctioning.

The discharge nurse was here. He said Tim may go home Wednesday or Thursday. We have to see if he can talk first. But they are bringing over the ventilator he will be using at home to learn how to use it. I need to go home and get his bed ready and get everything around us clear and ready for his arrival.

He is still complaining of chest pains.

Hopefully tomarrow I'll be back with an update.

As far as the move, it has not happaned. At the last minute we decided to stay since the new place was far more smaller than I remembered it to be. Hey I know all the packing is done but at least I got rid of a lot more junk!! A lot! and probably will get rid of more too.

But!! there is a chance we can move into a 3 bedroom for far less than the 2 bedroom at the complex where we are living. So the manager is looking into that and will let me know today I think!

Thank you to everyone for their prayers and thoughts.

DMD is killing my son

2010-08-06T15:14:00.000-04:00

Here we go again!!! My son, although 21 years old has Duchenne Muscular dystrophy...oh excuse me Progressive DMD. He is back in the hospital only now to get a Trach and live off of a ventilator. That means most likely we will have 24/7 nursing care. {sigh} The disease is progressively taking over his little body and my biggest fear that although I do not want him to suffer, I am so afriad of him dying on me too.

Today he had a central line (instead of a pic line) put in and is preparing for the surgery for the Trach to be put in. That means I have to much more alert to his needs while in the hospital due to not able to talk the first week. So we are putting a list together so he would know what to respond to.

We were going to move, but that has been put on hold because of Tim and the place we were suppose to move to...lol....all of suddenly seems so much smaller than I remember it to be. And it is disguesting!!! They need to replace all the tubs and toilets. Whoever lived there last was just plain disugesting.

We still have utility bills to pay. I did go ahead and pay the rent and!!! there is a chance we can move into a 3 bedroom place for less than what we are paying in the same complex.maybe not! I'm hungry but no money! i was hoping to go try out this vegetarian cookout tomarrow and might still go but I wanted to see what it was like. Sounds good.

Anyhow...living off the blue chair in ICU while Tim is physically and mentally suffering. I hate that he has to go through all this, but even if his body is failing him at least mentally he is full alert and knows what he wants and stratgizing to make sure things work out for good.

I pray and hope that the surgery will be a success for him. I'm abit anxious as he is.

Hope everyone is having a good weekend and will let you know via my blog how Tim is doing. Please keep him in your prayers...not only because what he is going through physically but also spiritually.

Love & hugs to all!

....the short of it all!

2010-07-31T09:27:00.000-04:00

It became a frantic day for me on Friday. Trying to get the house look decent before Tim's grand mother would come. I had 3 hours to do it and still needed to take Tim to his doctor for what appeared to be a open sore on his buttock. He was in pain and my fear was that he had developed a boil.

I cleaned as much as I could. After all, I'm packing and in middle of a move,so it was not going to look 100% pretty, know what I mean. But it looked clean.

Tim's nurse,Linda, and I got Tim ready and took him in to have these "sores" looked at. My other fear was that he was developing bed sores. The one thing I have been trying my best to prevent. I knew he was lying down more and up less due to his breathing. His pulmonologist thought he had a high level of CO2 and didn't, thank goodness.

When we got to the doctors office, they could see the white puss. For sure something was going on. By the time the doctor came in (who by the way, rides a 10 speed bike to work! no wonder she is so fit!), it for sure was cellulitis or also better known a boil. They proceded with the surgical procedure to remove it and advise to use warm compress and put him on an anitbotic 4x's a day.

Because Tim was in pain, we didn't take Linda over to see the new apartment or even stopped by Wal-mart. I took him home and put back to bed since he was in pain and having difficulty breathing. That is when I got the call from his grandmother. They were in town, but lost. I tried to direct them but after trying to give them directions from where they were at, we ended up meeting at Bank of America. I brought them in and of course, she started crying.

Trying to calm her down, she finally came in. After spending at least 15-20 minutes, and not even having the chance to sit down and talk or look at pictures, they were gone. Quite a quick visit for someone who drove a hour to get here. I was shock they were leaving so quickly. Not even a glass of water or a real visit. But perhaps it was for the best. Its probably the quickest visit of a relative I've seen. that was a record!

By the time they left, I was already feeling ill. I didn't know if my liver was acting up again. I had already had alot of discomfort through out the day,but now it had just got worse. Since we didn't go out to eat (Like I thought we were), I decided to do the Mom's night out. I was on my way after leaving Tim's script off at the pharmacy when I realized something was just wrong. My head didn't feel right, I was having abdominal pain, and I was starting to have chest pain. I decided to just go home and try to recoup from whatever it was. I took another hot shower which helped.

I had a good night sleep...Tim did too.

Now...I'm hungry!

Its going to be a Good Day!

2010-07-29T10:30:00.000-04:00

So I got an interesting call yesterday. One I at least did not expected. The number appeared on my cell phone and I didn't recognize it so I didn't answer it. Until I heard the voice mail.

Surprisling, it was my "mother-in-law", or better known as Tim's paternal grandmother. She was in Florida and wanted to come visit Tim. I, of course, was thrilled. At last someone from that family was making some type of effort to visit Tim since his illness has worsened. The last time he had family spend time with him was his uncle and aunts and cousins from Philly came down for his graduation. We had a wonderful time and it was so nice of them to be there for him. Which is more than I can say for his father whose made NO effort in over 13 years to spend time with him or seen him.

Yes, 13 years since Tim has seen his father. For the 5-6 times I have taken Tim to Philly to see his paternal side of the family, his father has cancelled on him everytime and be a no show. And then had the nerve to lie to the child support courts that I kept Tim from him?! Excuse me?!! I paid for the trips and took Tim up there with all his medical equipment. I did it. And He would not show. Of course the caseworker would ask him if this was true and his father would admit of his decption to them. (what an idiot)

Anyhow, last summer I desperately needed a break. I have been physically, mentally, emotionally and spirtually exhausted. I asked his father to come down and stay with him so I can go away and recoup. He did nothing but mad excuses and then offer to pay someone to do it, but when it came around to dishing the money, he did nothing but lie and made excuses. I never got my break that I needed. Of course, his other excuse is what if Tim died while I was gone...well what if Tim died i was standing right there? What kind of stupid question was that? The question should be since I have there for Tim 24/7, is what if Tim died and YOU were not here????

Well back to Mary coming to visit. The plan is to come on Friday around noonish. After hanging up with her, I realized my house was in a little disaster because of the move. I've been packing, so there are boxes every where and nothing on the walls. It looks bare in here now. I thought of making a meal but my dinning room is full of boxes and the table is covered with "plastic" plants. Even my bathrooms look empty...lol. However for appreciation of coming, I do want to do something a little special. I want to somehow distract the tension and "disagreements" about the son's she defends despite that some of their behaviorals are...what is the word I want to use...not all normal! Especially his dad. His uncles are 10x's more normal than his dad. At least they took responsibilty of their family and did the right thing and has a family and didn't run from their kids. Hey- he had the chance of joint custody and failed to show up to court!! so since I had full custody I really didn't need permission however, he knew we were moving and DID NOTHING TO STOP IT so whatever he tells his friends and family are probably lies!

So I decided to call Mary back and check to see if they would like to have dinner here with us, and if so, I will be glad to stuff the boxes into my room and make this place as plasant as possible. I would like to make my famous cabbage & pototo soup without the hot spice. And the pasta salad.

I want to make it plasant for Tim. I want to make it plasant for her and Tony and their friends. Only because that is who I am. I am NOT a mean person and I really don't hold a "grudge" against the family even if I do with Tim's dad. They are more of plasant people as long as there is NO drama going on or disagreements. I just don't like deception and I think they all have fallen into Tim's dad web of lies. I blame him for that.

I think I will scatter the plants to make it look good in here and I also want to get some watermelon.

I know I need to take a deep breath and pray that all things will work out for good. I trust that God will let this work out for good and it will be a wonderful day. Maybe, my positive influence will be an inspirational.

What are your suggestions?

More to come this weekend!

Blog & book of maternal Grandfather

2010-07-26T16:36:00.000-04:00

While at the family reunion in Miami, my aunt showed us a picture of her father, our grandfather Miguel. Wow! what a great picture of him. he was alot more handsome than I expected.

This was the first time we had seen a picture of him. We knew he had died of a young age from an illness. My aunt allowed me to take the photo and to scan it and to send copies to all his grandkids to have of their own. I finally had it printed last night and today, as I was placing it in a frame, I was just inspired by this man.

The story of my grandfather is that he was a wealthy and famous man in dominion republic. He was a baseball player and owner and loved to play. One spring, after the game, instead of waiting for clean and safe water to drink, he drank out of an old well. As the results he became very ill and died several days later.

When he died, his family, his community and his country mourned for his death. His coffin was carried by the men of his community and they walked the 40 blocks to bury him. And even months after his death, the candles were still lit and flowers placed at the cemetary and for blocks afterwards.

He treated his people good and helped the poor.

Well...today, as I was framing his photo so I can pack it (moving next week), I decided to write a book about him. I called my aunts and talked about it with them. They were thrilled. So now we are working on the process of compiling all the stories and histories about him and his family.

Here is our blog about him: http://miguelapichardo.blogspot.com/

I'm so excited to learn so much more about him...and as I teased my aunt, "maybe Lifetime will do a movie about him."

Is there someone in your family who is an inspiration to your family & community? If so, please share about them.

Family Reunion- part 2

2010-07-21T13:43:00.000-04:00

I'm sorry I did not get back sooner. Saturday was such a long day and so much done, that by the time I went to bed it was 4am Sunday morning. No, the party didn't last that long, I just was uploading pictures and doing laundry during the night so that we had more things to do on Sunday, which I could had done during the day since my sister and her grand-daughter took so long to get out of bed!

Anyhow. I had the chance to dip into the hotel pool on Saturday morning. Believe it or not, it was actually the first time that I jumped into a pool in years since living in Florida. Yes!!! crazy, I know! but true. It felt so good to be in the pool, I really didn't want to get out but had too. I still needed to shower and pick up my cousin at the airport before heading to Miami. Then just as I was ready to get into the shower,my cousin calls and her flight got in early. Like NO!!! We laughed and I did end up picking her up after my shower. My sister and her grand-daughter went with my brother, Mike and his wife to meet up with my younger sister, Jeanette and her husband at their hotel and then from there they were going to the Jai Ali (or something to that sort)before meeting up with family later that day.

But it took circling the airport 5 x's before realizing she was not down by Arrivals but still upstairs at Departures. I officially pretty much know the Ft. Lauderdale airport now. We took the cheap way around Miami (no tolls) to get to my aunts. Then on the last of the journey I had to pee so bad, I ended up going to their house first before finishing some grocery shopping. I called her ahead of time and advise to have the door unlock so I can run in! LOL (yeah I have one of those weak bladders).

I took my cousin's daughter, Brianna, to the grocery store and we picked up a few things, for the Mango ice cream and the Chicken-Grape Pasta Salad. I spent most of the afternoon cooking and preparing the ice cream before changing into clean clothes and making myself look decent. Family started to slowly creeping in...slowly we had all 26 folks there, sitting around the table eating the delicious cuban food (chicken & spanish rice with plantians and salad) and folks we were pratically a bar with all the beer we had.

We had a good visit....catching up with each other. The guys played football and we had family pictures done. Some want to go where Alexis (my cousins daughter) was working (bar-tender) and others wanted to do different things. We all just ended going back to either hotels or homes to sleep. (Ok...I blame the beer on that one!)

I didn't take as many pictures as I had hoped. I blame my eyes for this. But I did upload it only my facebook account and will share a few here.

On Sunday, we went to Ihop to eat and then drove up the Ft. Lauderdale beach. I would had loved to put my feet back in the sand and the ocean. The red flags were up, so we knew were was an Alert out. I think Rip tide or something else. We tried to catch up with my brothers and sister at the Dog races in WPalm but decided to skip out of that and went to my brother's house instead. Met up with my sister-in-law.

Beautiful house! I mean Beautiful house. they have very good taste in fashion. My sister in law and I had the chance to talk about pets, family, and common female stuff! she was making dinner and dessert while I peeled the mangos and sliced them up. My brothers and sister (and Paul) came in soon afterwards. The dinner was delicious. Meatballs & pasta with salad. Meatballs were great!!! I love meat balls.

For the early evening we sat outside by the pool and chatted, shared alot of different childhood memories. We left his house about 9pm and drove the 3 hours back to ORlando. I slept for a few hours before heading back to Gainesville.

Family Reunions are great to attend. Its a time to meet new family members or/and spend time with loveones you have not seen in a few years. Its a time to reconcile. It's a time to bond. It's a time to get re-acquanted. It's a time to say "hello" and don't bother with the "good-byes" for its the "hello's" that really matters. I hate "good-byes" and I hate waiting to say "hello" at funerals and "good-bye" to the one that passes.

Family reunions is about FAMILY. Brothers, sisters, dads, moms, aunts, uncles, cousins, and all the new generations. Its about bonding not only relationship but friendships. Its about love, its about honesty, its about respect, its about holding onto each other. Its about letting go bitterness and disagreements. Its about people you love even if there are disagreements. Let it go...and enjoy each other's company.

The next reunion is the BIRD reunion, supposely next summer and we are thinking of a cruise. So if you are Bird who gets "sea sick" -get over it quickly, cuz it won't be fun to have a reunion without you there! I'm thinking if we can't do a cruise at least do Vegas!

Family Reunion-part 1

2010-07-17T02:16:00.000-04:00

It's late Friday night and early Saturday morning. We arrived into Ft. Lauderdale about 6pm, got checked in and met up with my brother, Mike and his lovely "new" wife and had a nice dinner together.

When the sun is up, we will meet again for breakfast, then my sister, Donna will go with them and head out for the day, while I'll go to my aunt's and start the Grape-Chicken Pasta salad and the Mango Ice Cream. I'm picking up my cousin from the airport on the way, while my brother and sister will meet up with my younger sister, Jeanette and her husband, Paul at their hotel.

We are having a family reunion. The first since 1996 for the Pichardo family. Aunts, cousins & siblings will meet. Tonight is the main event. We will all meet at my aunts at 5ish for our big dinner party and family pictures.

I hope sometime today, that I can head to the beach. I would love to get my feet in the sand and feel thr great Atlantic ocean waves. Its been a long time but think it will be fun.

ITs been a long time since I've been in Ft. lauderdale. I can remember growing up here as a kid (before my mother passed). This city has grown tremendously and alot of changes, but every time I come here it still reminds me alot of my childhood days.

Well..its early Saturday morning. Its hot and I can't sleep. I'll watch some tv and see if that will help me back to sleep. I'll tell you much more later or tomarrow. Maybe a picture or two.

Please come back for part 2 ....have a good night...& sweet dreams.

Those annoying little Critters

2010-07-12T09:58:00.001-04:00

Your probably going to think this is the strangest blog I ever had. Go ahead and laugh. Maybe it seems stupid too. But its something I always think of when I enter my kitchen and often see these little critters running around.

I don't know how many other have these little critters in their house-roaches. They are becoming less n' less though, thank goodness. But when ever I spray RAID on them, I often wonder about them.

Do they have a heart? How about kidneys? What is their heart like? and as often as they eat, do they ever become diabetics too? (LOL) How about any of the diseases we have to deal with? Or how long is their life span (if they don't get squashed first)?

So while thinking of this over night, I decided to see if I can google the antomy of a roach. Yes!! Read about it! Serprising. How about the Facts of Roach?

Cockroaches are thought to be about 350 million years old, making them one of the oldest surviving creatures. They have been able to survive because of their rapid reproductive cycles and adaptability to poisons, environments, and even nuclear bombs. One of the largest is the Madagascar hissing cockroach, which has become a popular pet. Another large roach is Megaloblatta blaberoides, a resident of Central and South America. It has been measured at about 100mm long. Some roaches can fly and one has been measured to have a wing span of about one foot.

Their ability to withstand radiation is very interesting. They have a very hard outer shell or exoskeleton, which is less prone to absorb radiation. Their skin molts, which means shedding, and this removes the radiation. In addition, they have an unusual different chromosome structure, which is difficult for radiation to shatter. The butterfly is similar to the cockroach in this respect.

Although they live in proximity to each other in crevices or harbingers, they are not social insects such as the bee, termite, or the ant. This need to keep in touch with their surroundings is called thigmotaxis. Their immunity extends to poisons, and they are known to survive decapitation. I later read that this is possible because they have two nerve centers-one in the head, the other in the tail. The only way it would eventually die would be from dehydration. They can do without food for over one month, but they need water at least once a week. They will feed on all foods, grease, paint, wallpaper paste, and even bookbinding.

The female will have up to forty babies at one time. Some species will mate only once and they will remain pregnant for the rest of their lives. Adults will live for an average of eight to fifteen months. Cockroaches reproduce on an average of four times per year. Females have a broader abdomen and are more rounded than the male. This constant reproduction adds to their ability to become immune to environment changes or pesticides. The basic structure of the cockroach has, however, remained the same since the middle of the Silurian period almost 365 million years ago. The life cycle of the cockroach is from egg-nymph-adult. This cycle is called simple metamorphosis. It means that the younger nymphs look very similar to the adult and will only differ in size.

After studying this insect, I have become less afraid of it than when I went on the inspection tour. The more you learn about something, the less you fear it. I have seen how the insect's body works in many ways like ours: It chews and digests its food. It can reproduce. It will produce excrement to rid itself of waste. It is part of the world's ecosystem. Only a small portion of the thousands of species are considered pests with little value in the food chain. In a tropical rain forest, cockroaches live on the forest floor or high in trees where they are part of the food web. They also frequently inhabit caves where they are a source of food for bats. They are not as destructive as other insects, such as the termite. They don't spread deadly germs like the mosquito has been found to do. They are not as dangerous as the black widow spider or the killer bee. If the roach would disappear, the species I observed would not affect the ecosystem in a negative way because there are many other species which can be a source of food without being such a problem for humans. If people would study it some more, then maybe the cockroach will not rank as the number one hated creature in the next survey.

Its a Family Thing!

2010-07-10T11:12:00.000-04:00

So next week at this time I will be in Miami...celebrating our family reunion on my mother's side of the family. So far- as far as I know everyone is showing up except for my older sister, Linda.

I plan to go to my Aunt's to make the Chicken-Grape Pasta salad, mango ice cream and maybe my infamous Cabbage-Potato soup. Then I plan to spend the rest of the day at the beach with or without family. We plan to meet up at my aunt's at 5 to do our family picture and to Family potluck.

Hopefully on Sunday, we will meet up with my younger brother and his family and do a sibling family thing together. Not quite sure how that will turn out but I can assure you, you will know by next week what happens.

The question is this...will there be any family drama? LOL God I hope not and really don't expect it will happen. The purpose of the reunion is to be with my one aunt whose had two anyuism (sp?) lost her sight and now that she is getting to that age, part of her self. One great thing is that she is still has a wonderful sense of humor. She has not lost that.

I'm going to be spending most of this week packing. Getting ready for the move in August.

I need to get the cookbooks sold before the move. I NEED to get them sold quickly. I've done all I can and now I'm exhausted and they need to sell.
Anyone want a vegetarian cookbook with loads of tasteful delicious recipes and more goodies?

Well I need to go finish laundry...make myself an omlett, go look for boxes and watch some movies.

What are your plans for the day?

Mango Ice Cream

2-3 fresh Mangoes
6 cups of Milk
1 Tbsp Vanilla
2 Tbsp Honey
2 Cups Sugar
1 cut up fresh mango
1 tsp lime (optional)

Blend together.

Add remaining chopped mango (and nuts-optional) into blended mix.

Pour into ice cream bucket to churn. Churn for 2-3 hours. Put in freezer. Serve cold. Serves up to 6 persons.

Enjoy!!

Happy 4th Everyone!

2010-07-04T08:03:00.000-04:00

Today, we are reminded here in good ole' USA what FREEDOM is about. What our constitional rights are. Today we celebrate friendship, family and lots of good food! Today, we are fortunate for what we have, even if we may not always agree of those rights, but the fact we have is important.

Now give me that cold crispy watermelon, grilled hot-dogs and hamburgers and all the goodies that comes with it!

Happy 4th Everyone!

PS Don't forget the ice cream!

So I did it!!

2010-07-03T23:37:00.000-04:00

So I did it! Yep. I stepped out of my "isolated box" and went to a car dealership for just the prizes (ok...I got a Walmart ($5) gift card and free hot dogs and won a "Free" 2 night-3 day vacation trip. Well that was my intention at least.

I also drove out with a new (2008) navy blue Dodge Grand Caravan with only 41K on it. Its nice. But does not have as much features on it as the other van did. So I'm kicking myself in the ass for letting those guys suck me in. At least I found out my extended warrenty was about ready to run out anyhow. Yep...my bipolar won again. Sucks! I'm screwed. Nothing new.

But what I really wanting to blog about is that I did get rid of my two other blogs (family history and the photography one). Nothing was happening there and I have a hard enough time keeping up with this one. However!!!! I did create a NEW BLOG on the cookbook. It is really Awesome!!! You should go check it out and read on discount updates including sharing recipes from the FROM HEART TO HOME VEGETARIAN COOKBOOK.

Plus I like how blogspot has really updated their blogs. It made it easier for me to create a cool site to help raise funds for our Alumni Association. The cookbook is a vegetarian cookbook but it is alot of delicious and tasteful recipes. You can even read on what others are saying about the cookbook.

So check it out...our new blog at: http://from-heart-to-home.blogspot.com and share it with your family and friends. We are having a Moving sale right now, so the price of the cookbook has been reduced.

Hoping you all have safe & happy 4th of July!

Comfort food

2010-06-24T21:48:00.003-04:00

The last few days I've been spending time in my room. Sleeping on and off. Trying to get a grip of myself and the pain. The pain pill helps sometimes but not long enough to make a difference and since she only gave me a few pills I have to use it sparingly for it to last longer.

Mentally & emotionally I'm exhausted. Its one of those times that I just feel like I'm spinning in circles and trying to figure out what to do with my life. Sometimes I feel like I'm not going anywhere and the times I think I am, I end up just failing. I feel like a failure in a lot of things that I do, and mostly who I am.

Dr. Bill probably will tell me that is my "abuser values" talking. Probably so. Problem is I believe it. So why do I do what I do? I thought the good and nice thing about me was that I am a very caring and compassionate person but if that is so true why does it seem that no matter what I try to do that is caring and compassionate that it comes back to me so negative and failing. I go into the "give up" mode and then suddenly I'm back up again trying again and suddenly I'm back on my face again. I keep getting up and brushing the dirt off and start all over again. But it becomes a spinning cycle. I'm so tired of it.

I made some executive decisions to shut down alot of my online groups and some websites. I just can't do or don't want to do it anymore. I'm so tired of putting out all the effort and work and no one else does. At times I feel like I 'm talking to myself.

My therapist went on vacation, so I'm trying to talk myself "down" or out of this deep depression that I have (again) fallen into. Just glad a lot of times there is a saftey net there if I would just stop slipping through the cracks.

Timothy is doing pretty good...his sleep schedule is off again. We are having the strangest nurses come over and the best ones we had stopped coming. Don't know why, but disappointed in a lot of ways.

This weekend I hope to start packing but need to find a place to put the packed stuff. All these boxes of cookbooks seems to be occupying those spots. I need to sell these cookbooks...but no one is biting.

Well...I need to get a bowl of ice-cream. At least I hope to have comfort food.

I c e C r e a m ....such a sweet sound...sweet words!

Survivor

2010-06-16T12:01:00.002-04:00

So!!! I, of course, survived the angiogram. It wasn't as bad as I thought it would be other than I'm still sore down in my groin. A little swollen but no bruising. And the doctor gave me a clarence for the surgery. No blockage in my arteries. Woooohoooo!! Thank goodness.

However, I'm still in pain in my lower abdominal. Couldn't take it any longer and the doctor put me on pain meds until the surgery is scheduled. Which I'm taking now it won't be until after our move in August.

It is official. We are moving deeper into the Gainesville area. The rent will be less, the apaartment will be 200 sq feet less and my kitchen will be smaller. I love my kitchen here. However, we will have a swimming pool and a fitness center to work in. yes!!!! I can get back into shape. For real.

Tim is doing ok...sleeping more. The heat is getting to him, making it difficult to breath. The other reason why we are moving, we need to be in centeral air and heat and not these stupid window units that is killing us financially (electic bill).

Now that we are moving, I have to sell these cookbooks. There will be NO room for them at my new place. Not even for a kitchen "island" like I have here. So I do have a Moving special going on from now until August 1. You can go check it out at: www.fromheart2home.org. They need to sell!! I need to start packing but have no room to put all my packing stuff cuz the cookbooks are in the way.

Well...I'm ready for a sandwich and a nap. I have not been feeling to well between the physical pain and the emotional wreck I feel I'm in! Time for a movie! A foreign romantic movie. Ohhh I saw a good foreign movie the other day, from Japan call Departure. Good movie! I gave it five stars of the 5. hehehehe yes that good.

Later!

The "Final" Day

2010-06-06T17:47:00.000-04:00

So I was all set for my surgery that was suppose to come up this Wednesday. As they say ...I was about ready to loose my "womenhood"....that curse God placed on Women when Eve ate that apple...the period. Which comes to question why its even called that. I thought that journey was coming to an end of this road. Part of me was sort of excited inspite the risk of the sugery. While the other part of me was dreading it cuz that meant there would be changes in my body and I hate changes! Despise it!

I went in to see my Cardiologist to get a clarence for the surgery when he told me that there was no way I can have that surgery with all the cardio risk I was under. Abnomal EKG, abnormal labs, syptoms of cardio. So he told me to postpone the surgery and he set up an Echogram and a Angiogram for me for the 8th. Something I thought I never would have to have. Something I am terrified of since I've heard so many risk with it.

Now I'm looking for a ride to the procedure and someone to take me home since I'm not allow to drive on that day. I"m just not getting anywhere. I might have to walk home! (hey don't tell the doctor that!!)

I'm suppose have all my i's dotted, all my t's crossed and so on before this day. Make sure Tim is taking care and where all my pocessions go incase I don't walk out of it alive. Instead, I find myself making my infamous cabbage soup with the cabbage, carrots, peppers, (flavor) soup, meat, etc..etc... My last meal as I would call it. I pray every day that to please let me live on but know if it is my time, well its my time. I won't like it, but hey, He's in charge. I just pray that if I go, that maybe Tim will too because I don't think he will survive without me and for sure would not survive with his father. (the idiot who promised to talk to Tim every day has not responded in over a month!!! nothing. not a word. not a reply from emails or texts. idiot..liar!)

I don't have life insurance...I have no money for a funeral. Most likely no one won't even come or even remember me! So....see I said it!

So I should had cleaned my room today. I have jury duty tomarrow. How fun! (Can't you tell I'm so excited!)

I went down to Orlando for the weekend and saw my grand-niece graduate from pre-school. She was sooooo cute in her gown and cap. So in 13 years it will be her great day from High school and we will have these pictures to brag about! Oh and a video too. LOL

So while I was gone, Tim had a nurse stay with him. So when it was time to put him to bed, instead of doing her job as she should of, she called 911 and had the firefighters do it instead. So when I heard this I was furious. That is NOT their job. It is NOT in their job description to put someone to bed. That is in YOUR job description. What is wrong witht his lady? IF the Fire Rescue service charges us for this non-emergency service, I can guarantee you that she will have to pay for it or the nursing agency. But it won't come out of my pocket. I did NOT authorize it. He was NOT dying. He was still breathing...heart still beating, not having difficulty. Know what I mean? I am furious that they sent a nurse over who can't do her damn job! If you can't be a caregiver/nurse and do your job then get out of the business and do something else. Stop making excuses. first they sent an overweight nurse who can't even get out of the sofa and get to him on a timely manner. whose left him in bed cuz he can't lift him, then a nurse about ready to retire and can't lift. Then why the hell are they here? Know what I mean? I need people who can step in when I can't. And when I have those procedures and surgery, for 6-8 weeks I will not be able to.

Anyhow...I hear my soup boiling away. Better go tend to it. Maybe I"ll blog tomarrow before my "final" day. My execution. LOL

later ladies!

The Mirror- part 1

2010-05-23T19:35:00.003-04:00

I was talking to a good friend today, and we were discussing some family stuff. And something popped in my head as we were talking and laughing that we all need a mirror to be put in front of us. Not to see how ugly or pretty we are to be look at our own character.

When you look at the mirror, what do you see? Do you like what you see. I'm not talking about if you have enough make up, if your hair is just right, if the dress your wearing fits just right or if the shoes are good match. I'm talking about looking into the mirror to look at your character. Are you really happy with yourself? Do you like who you are? Is there something you see you would like to see change? IS your lifestyle making you happy?

Often when I look in the mirror it upsets me. As it is, I have low self-esteem of myself. But when I look into the mirror, I see more of my inner self and ask God to please help me with the changes in my life. Spiritually, I'm growing stronger closer to Him...but then I see my flaws. That sort of throws me off abit. I know I have alot of flaws in my own character and I've asked God to help me change this so that I can be a better person.

I've had to deal with alot in my life...spiritually, emotionally, physically and mentally. Its the circle I"m in that I have to look at each chapter and figure where my journey is taking me. Do I live my life without a script or do I need to be "toyed" around by others around me. I know God needs to be the only dictator, the Teacher but mostly my Savior. Its not religeon or the people of a religeous organization. It's God. That is one chapter I work on daily in my life.

I have a good dear friend who is not a believer. IN fact she jokes and says she is a "heathen." however she grew up in a good southern baptist church and brought up her boys in church. But then something snapped that suddenly she no longer believes in God, the Bible and redemption. I can't imagine not believing in a God...an Awesome God who loves us, died for us, accepts us...all unconditionally. My heart breaks that she lost that faith. I know she would tell me not too. But it does. But I also know I can't force my belief on her. I can't force God on her. I can be that influence and hope to guide her time after time. I do pray for her even if she does not want me to. But I do anyway. I tell her that I do believe she is still a believer but she doesn't want to admit to it. She has a beautiful voice when she sang the Old Rugged Cross.

I believe God put her in my life, as much as I believe God put me into her life. I pray that one day, before she is taken away from us that she will accept Jesus...again. God brings people into our lives for a reason. We don't always understand why and even sometimes we have a hard time accepting the reasons. But God has a plan. And sometimes we have the fear of opening our ears and eyes to see what that plan is.

Now I'm not a religeous person...please don't get me wrong. I occassionally attend a non-demonition church. I listen to alot of christian music and often to certain television broadcast. I can tell you for sure I am no angel...I still have a long ways to go spiritually, but I am taking my baby steps and I know God is waiting with wide open arms.

As you look in the mirror, where are you spiritually?

The Short of it all

2010-05-20T14:17:00.002-04:00

So...from my last blog, I've been in the ER. I was in an enomorous amount of pain. I thought I was being electricuted! I hate to wait till the next nursing shift before going into the ER.

The ER doctor gave the whole works, the EKG, hooked me up to the monitors, chest xrays and a cat scan after to drinking this yucky stuff. The outcome? I have Fibrid tumours through out my uterus (hence the biopsy). He gave me some pain meds and told me to proceed with the ultrasound on Friday and biopsy next week. Now I'm not sure what to think ...I know how I feel.

I was so happy how SURVIVOR ended on Sunday!!

I'm putting in some type of plan to sell the cookbooks. They need to be sold ASAP!! I don't know how long I will be out of commission after the surgery and they really need to get out of my house. I also want to close the website real soon too but need to sell those cookbooks first.

I"m trying to find a way to pay my electric bill before next week. I can't have it turned off due to Tim and his breathing machine. I asked Tim's dad to help but now he is not even responding to anything. I'm getting tired of the child support game that he is playing. And the sad things is that it is Tim that is suffering the most because of his ego seems to be in priority. I'm all out of money and I still have meds to get and a few other bills.

now that we have 24/7 nursing, that means I'm buyiing more TP, paper towels, soap and hand sanitzers. Extra expenses that I didn't participate in. As it is we are so low in funds and we just don't have the income for all our expenses to live "comfortably".

well i need to get up and go lie down. my hips are killing me and i'm in pain with my lower abdominal. i have not been able to get the pain pills cuz lack of $$ right now. life sux!!

My computer is not working right now and Tim's needs to be upgraded... needs more memory. it is so slow and freezes up alot.

later...for now.

The Risk of Procrastinating

2010-05-12T15:31:00.002-04:00

I guess if you don't go visit your doctor when you think something is wrong, there may be just some "consequences" for procrastinating. I'm guilty of procrastinating...big time!

So I finally had a visit with a particular doctor! Let's just say that its like going to the dentist in a way...you just don't want to be there and dread every moment of being there because you know what is about to happen. (LOL)

I learned after the doctor was all done that I have a collapse uterus. Almost "delivering" it. She had a fear there is something else is going on and so a biopsy is set up after the ultrasound. Which I dread because #1 I have a weak bladder and the idea of having a full bladder and someone pressing on it does NOT thrill me. #2, I've heard so much about it but never had a done-a biopsy. Not sure what to think or feel about it.

There is a chance I also have endometriosis. Loads of it. Sucks! Sickening. The joy of womenhood. But life goes on...hopefully.

So I took risk of procrastinating and now I suffer the consequences. the pain. and all the little extras that comes with it.

I'm also schedule to see the cardiologist and neurologist for a few of other issues that I have been avoiding.

Life goes on...what have you done to stay healthy? OR are you like me...afraid to go in?

What If....

2010-05-10T10:20:00.002-04:00

What if...

As I was driving down the road the other day, I noticed a homeless man standing there holding a sign asking for "help" in some way or form. He looked hungry. I really didn't have cash and I was bit hungry myself. So I made a decision to get him something too.

I drove up into Taco Bell trying to decide what to order for me...muchless him. As for him, he didn't know I even existed muchless food was being brought to him.

I am constantly reminded in Matthew 25 how Jesus talked about being hungry, homeless, without many things and how we as his followers opened our hearts and doors to Him. He also talks about how we may not know if the next guy may be "representing" God and how are we going to treat each other. We can choose to treat him with respect and help him or we can choose to ignor him...as we do many times in our lives with God.

I ordered the cheese 5 layer burrito and a chicken burrito. I drove back to the highway ramp and beeped my horn. He came running and graciously thanked me over n' over. Of course the cars behind me were not happy that I stopped in a weird place to feed a hungry man. They somehow drove around me and furiously. I had to laugh because some people just don't know a good deed when they see it.

Do you remember the movie...Pass it Forward. The idea is do good to one person and ask them in favor to do the same to another person and keep passing it on to the next person. IN a sense, helping the homeless is the same...though I never asked the gentleman to do good until others as we do until him. I would had liked to tell him but since horns were being beeped behind me...it was hard to have a conversation....ya know?

Anyhow...it was a good and satisfying feeling to know someone had something to eat. Even if I had cash, I wouldnot give it to them beccause I don't want them using it for drugs or a alcohol drink. I think more people are more content with food.

I did my PASS IT FORWARD for this week, and I"m sure there may be more to come. I know the good Lord is looking down smiling know that someone fed Him on Saturday.

What if God was one of us. What if He was amongst us and we failed to acknowledge Him. Ignored him and allowed him to go without when we had the opportunity to feed, cloth or find a safe place to sleep? We don't know His face or his real name. We don't know if he sleeps under the underpass or if sleeps at a homeless shelter. We don't know if he has holes in his shoes or a blanket to keep his body warm. He may look filthy, lacking a good hot shower or he may be well organized and clean.

What if....

What is a mother?

2010-05-05T14:09:00.005-04:00

Mothers. What is a mother? What makes a mother? Can anyone be a mother? If not, why?

A mother is a woman who has, concieved, given birth to, and raised a child. Because of the complexity and differences of a mothers' social, cultural, and religious definitions and roles, it is challenging to define a mother to suit a universally accepted definition. (allworlds.com)

You can read alot about mother's by just googling it. You will see there are many types of definitions and interpretation of a mother. Some you may totally agree with, while others you will totally disagree with.

What does a mother mean to you....do you have a definition of your own?

Share your special experience you've had with your mom.

here are some links that might make you smile....or a laugh on Mom's.

The Invisible Women

http://www.youtube.com/watch?v=9YU0aNAHXP0
The Mom song

http://www.youtube.com/watch?v=CXgoJ0f5EsQ

What is a Mother?

A Mother has so many things to do,

From washing, ironing, cleaning to tying a shoe.

She scrubs, she mends, she cooks and sews,

She bathes the children and washes their clothes.

When they forget to wash their faces clean,

And their clothes are the muddiest you've ever seen,

Who repairs the clothes and scrubs them like new?

Of course, that is what a Mother will do.

Who becomes the doctor or the nurse when they are ill,

Applying a bandage or giving them a pill?

Who becomes a teacher when a child has homework?

She must never her duty shirk.

Who becomes a detective to find a toy or a book?

For missing things she must look and look?

Who becomes a listner to every heartache,

To every accompolishment that a child makes?

Who scolds their children when they are naughty,

Or remind them of God when they are to haughty?

Who tends her family with love and patience, too?

Of course that is what a Mother will do.

- Unknown

A Mother's Love

There are times when only a Mother's love

Can understand our tears,

Can soothe our disappoints

And calm all of our fears.
There are times when only a Mother's love

Can share the joy we feel

When something we've dreamed about

Quite suddenly is real.
There are times when only a Mother's faith

Can help us on life's way

And inspire in us the confidence

We need from day to day.
For a Mother's heart and a Mother's faith

And a Mother's steadfast love

Were fashioned by the Angels

And sent from God above...
- Author Unknown.

God's Masterpiece Is Mother

God took the fragrance of a flower...

The majesty of a tree...

The gentleness of morning dew...

The calm of a quiet sea...

The beauty of the twilight hour...

The soul of a starry night...

The laughter of a rippling brook...

The grace of a bird in flight...

Then God fashioned from these things

A creation like no other,

And when his masterpiece was through

He called it simply - Mother.
- Herbert Farnham

http://www.mothers.net/motherspoems.htm

In 1971 I was ten (10) years old, almost 11 years old, when I suddenly lost my mother to a senseless death. But I don't want to talk about her death. I want to talk about my mother, Candy. The woman I remember her as.

The funny, outgoing, spontanous lady...who often cried with pain physically and emotionally. Who found God in her own way and who wanted to share God with others, including to her murderer. The mother who love to do pranks (especially with her false teeth). The woman who worked hard to raise her children as a single parent. The woman who loved the beach, loved music and yes even enjoyed her sexual life style. But that is not the main point.

My mother was an extremely loving and beautiful woman who knew how to reach out and be there for you even if many times no one was there for her.

My mother's death was in vain. In my opinon, her death was not resolved, the book has not closed and I beleive she speaks to me in my dreams and I am finding out more n more what really happened that day.

My mother, Candy was Dominican...but her elegance was so American. She was looking for the dream and I believe she was on her way to that dream when her life was quickly taken from her. But she never gave up through her ups and downs. I believed she would had lived her dream if she would had lived on. My mother... a woman of God...a mother of six great kids and now her 7 grand children proudly memorialize her in our special way.

Happy Mother's day!

http://www.youtube.com/watch?v=4ycrohpK79Q

A Swatt Journey

2010-05-01T07:33:00.004-04:00

You know...sometimes in life's journey we share different types of experiences on the path we journey on. I know for me, my journey, probably like your's has been difficult. Am I really that difficult of a person? I have to laugh because I have to wonder how true it is.

Tim's nurses started on April 5 and there was a time we even had 24/7 nursing care while I was hospitalized. We are on the trial base to see which nurse is going to be good for Tim on a more steady basis. We are still in that trial phrase. But I can tell you it has been nice to take some type of a break and do things. I have missed that. But it also drives me crazy that I am not here with Tim alot either. I know ! I know! I have to let them do their job and work on me now. But after 21 years of caring for my son, it has been difficult to just "let go!" Hoping that makes sense. I still care for him at nights and occassiionally help the nurses on things. Tim can be difficult at times, but more so pickey. He reminds me to much of his father.

I spent about 10 days in the hospital. Had a very bad experience that now my anxiety level is almost maxed out. Thank God for CJ!!! couldn't ask for a better therapist....& friend. I wish there was a way I can help her when her pain level is maxed out too. I don't know how but to let her have her space and rest. Lupus sucks! For her that is or anyone around her that is affected with it. Like Musuclary dystrophy, you just get tired of it. Even with depression. It just sucks!

MY house is clean and has been kept clean too. Believe it or not but one of the nurses here loves to clean. So why not? LOL why not? hey if she wants to keep her self busy, I aint complaining! But!!!!!! my room still lacks that loving care. Yeah, I got to do it. Somehow....someday. I do want to sleep on my bed again. Just put the laundry away and organize the paper work and I'm set to go. LOL yeah right. my procrastination has really "paid off" for me.

I have really been neglecting my blogs. I apologize. I don't have any excuses. I want to do better at it especially for my followers whom I've also neglected. I hope to do better.

I would like to say more, but for now I want to eat something and maybe lie down but first need to go take my morning walk and then rest! I have been taking walks every day this week and maaged to finally for the first time in years buy a new pair of sneakers for my walks. My feet is feeling the newness of the shoes. But my body is feeling muscles I forgot I had. Sad, but true.
but I did had a wierd experience the other day on my walk.

It was within the first few minutes of my walk as I walked down University Ave and saw police lights flashing. So I thought was being pulled but realized the first car was a sherriffs car. Ok...so I thought the guy behind him was trying to stop his buddy but then I saw the humby (a swatt team). As I just walked over the one driveway into the apartments behind me, suddenly I heard this LOUD BOOM! I think I jumped 2 feet from that explosion. I had not realized that the swat team already jumped out and raided an apartment that fast. I was fasinated by the whole thing that I watched from behind a fence. Then I saw the swat guys. OMG! honeys you can come pad me down any time! I watched for about 10 minutes and then tried to continue my walk but realized I had used my whole walking time watching this that I needed to get back to Tim and be back home before the nurse comes in. What an experience!

My experience in the hospital last week was to sad and triggering for me at this time that the thought of sharing it will only set me off again, so I will refrain from sharing it even if I know I can just go and copy/paste my complaint form to the administrator on here for you to read, but I will spare you the boredome and trauma and drama of my life.

Well I need to go on my walk. I hope you all have a good weekend. It is officially May. Where has this year gone?

I just had a sudden flashback memory of my mother as we kids as young as we were trying to find money to get her a mother's day gift (or her birthday). I remember this and not sure why the memory flashed back. I miss my mother. BTW I found the large black book with all the investigation into her death and learned some new things that really flawed her murder investigation. Explains why the guy got away with so much BS!!!

Later!

You Are Connected

When you look out at the world, a little bit of what you see is the world. Much of what you see, however, is you.

No experience is completely objective. Most experiences are hardly objective at all.

If you're having a bad day, that's an opportunity to change your perceptions. Choose to do so, and the whole world can suddenly be a much more positive place.

Instead of projecting your worst fears onto life, project your highest hopes and most treasured dreams. See what things look like then.

You are connected to all you observe and experience. Make a positive difference in you, and you make a positive difference in it all.

-- Ralph MarstonRead more: http://greatday.com/motivate/index.html#ixzz0mg84INCf

Happy Birthday Timothy!

2010-04-03T22:55:00.003-04:00

It doesn't seem possible that 21 years has already come and gone. It seems like it was just yesterday that I gave birth to my son, Timothy. He arrived at 5:30 am on April 3rd ...right on his due date! Thanks to probably Pizza Hut...where my water broke.

Unbelievble...he awoke at that time this morning calling out to me to be turned over. I laughed about it and mentioned it to him.

I had hoped he would want to do something today...like go out and celebrate. But he was not in the mood. He didn't even want anything special. No special drinks or desserts. He just wanted his typical ordinary day on his computer watching his anime and movies.

It's hard to believe all that he has gone through the last 15 years or more. His diagnosis has been a shock ...still and to some still in denial. But despite all that he has gone through and the many times he has been in ICU the last 10 years, he has shown the spirit that most of us probably couldn't show. His attitude about life has be great and attitude about his father has changed from good to bad.

My son finished high school with high honors and even with his disability, he has managed to attend the Univerisity of Florida for at least a year before his respiration failed on him, making him decide to quit collge.

Today, my son became a "legal" man....good things are yet to come. something we will hang onto our memories for a long time.

HAPPY BIRTHDAY TIMOTHY! may you have many many many more!

Celebration of a Reunion

2010-03-24T11:24:00.006-04:00

A few weeks ago, a elementary school/jr. high classmate that I have reconnected with on Facebook told me that she will be in the Orlando area due to her job. I was excited, as the last time I saw her was in 1977.

Well...once I knew which days she was going to take off, I went with force to find several other classmates whom I knew was living in the Orlando area. The two had been best friends back then and as far as I knew, they had not seen each other since then. Our lives all changed after graduating from 8th grade. Everyone went different place for our "high school" (Academy) days.

I knew that Val was in the Orlando area, but I just could not find her. I knew where she worked (If she was still there) and I knew her younger sister was a real-estate agent but her name (as I knew it) was not showing up. It was fustrating. Their brother was on Facebook too...so I emailed him pleading with him to please help us contact them before our dear friend Vicki showed up. Gracefully, he did respond. Only the numbers were switched. So I replied asking for an accurate number.

Meanwhile, after much internet research, I found Tina...realizing she had re-married. I contacted her on her cell phone and we talked, also getting Val's correct number. The next day I was able to contact Val and we were able to talk and I wanted to leave this as a surprise to Vicki because the last she knew, we were not able to find Val and the family. So Val and I planned a surprised luncheon at her house.

All week, I was nervous, hoping this was not going to fall apart. Until Vicki posted a message about her father's close to death encounter on FB. I panic...not just because of our surprise but the sadness of his illness . I was afraid any day she may be flying back home and we would have to put the reunion party on hold. But I didn't want to say anything to Val yet. Then the good news came that Vicki's dad was doing much better and moved out of ICU. An answered to prayer! I knew how close she is to her parents as the youngest of 6 kids.

Then the day came!!! Alleluia!! I was able to get respite care for 36 hours, so I took the time to go down and spend time with some "old friends". Well....I had told Vicki that we were going out to eat at the Fyels. She had no clue what that was or even where. I wanted her to assume it was an restaurant. So I told my sister (who does taxes) that why don't we take an envelope and let her think we are dropping off tax papers at a clients house. We had to come up with an excuse to why we were entering a gated community & not a restaurant. (LOL)

As we got closer to the community where Val and Tina lived, Vicki began to feel a little "paranoid" and wanted to know where we were taking her. I tried so hard not to laugh. I just told her we had to drop off tax papers for one of Donna's clients. She wanted her car now. Or even to stop and let her walk back to her hotel. I laughed. I told her to relax its gonna be ok! I was seriously trying not to laugh. I kept reading the driving directions to my sister till we got there. As we pulled up to the house I kept exclaiming how nice this area was and the house and commenting how these clients must be really rich...lol. For some reason, Vicki was not buying into it.

Well Vicki was still feeling unsubtle about all this. she was texting her husband about it. Donna got out with the envelope and approached the front door whispering to Val to pretend she was a client....Val laughed and came out. It had been over 10 years since I saw Val so I jumped out and went to hug her...& that is when Vicki realized where we were at and whom she was stearing at. She tried to jump out of the van, but the back doors were still lock. LOL finally I unlocked the door and Vicki pratically jumped out and pushed me aside to grab Val and they both hugged.

It was definitly a huge surprise for Vicki. She was excited and thrilled. Val and Tina had made a wonderful lunch and we just talked. We met Val's new husband and Tina's new husband too. We talked for hours, even with the walk around the lake (and yes saw an alligator) and back at the house in the back patio and while eating pizza for supper.

Sadly, our visit came to an end at about 10pm. I hated to go and I think the others didn't want the visit to end either.

It was a celebration of friendship! It was a glimps of what great things to come. Someday, we will all be together for a great reunion....in Culpeper Virginia.

I had fun, enjoyed myself and the food was just....fabulous!

Thank you Val (& Tina) for participating in this great reunion!

Praying for a Miracle-God's mercy & grace

2010-03-12T19:35:00.003-05:00

So I'm trying to take a long deep breath without passing out. Some anxiety has built up. Why? I just learned that my maternal aunt, Blanca (my mother's youngest sister) has another anuism and now she is blind in both eyes and is right now in CCU and on life support. It happened early this morning.

A year ago while at church she had an anuism and had to have emergency surgery to stop the bleeding. They didn't think she would survive the night. But she did. She survived all odds by the grace & mercy of God. She came home and survived another year of goodness with her faith in God, she pulled through.

Tonight, she fights for her life...again. Her 70 year old body struggles for every breath. It is with my hope, faith and prayers that she survives again. Only her life is going to be changed forever...different. Her vision will be gone. She will now see a "dark world" instead of the sun, the stars, the moon, the colors and her children's faces, her grandchildren's faces. Her siblings and many more of love ones and friends. But if I know her well, her spirit will be high level and she will find a way to cheer everyone up.

She had just learned yesterday that her dog has cancer and most likely will not survive. Her older sister, my other aunt, has fallen and broken her shoulder and will need surgery next week to put back her 71 year old shoulder. It just doesn't get any better. As Mercedes says, 2010 has not start out well for them. Probably the best news for Mercedes is that she has a new grandson.

Blanca's two children, my cousins Vilma and George, are flying into Miami tomarrow to be with their mother. Its probably more than they can take. Its hard to see your parents suffer when you are so use to them being that vibrant hyper funny excited person. Know what I mean?

Next week, I am to meet up with a friend I have not seen for about 30 years. At least I hope I can still meet up with her, by the Grace of God...if nothing else goes wrong in the "Pichardo" gang.

I'm trying to seperate that "grief" or sense of "guilt" or whatever the right word is since I connect my Aunt with my mother. It's that one things she was connected to that may be gone and I really don't want to hear muchless see it. To understand it is one thing, to accept it is another thing. I don't want to crawl back under the covers and "weep" again. I'm still trying to get over my mother's death even if it has been over 38 years. I still having a terrible time accepting that.

So...I pray for God's mercy...and God's healing for my Aunt...but knowing at least I know she is at peace with her God and knowing that there is a wonderful place for her-when that time comes.

Please, if you believe in God ...keep Blanca in your prayers, and for her family too. I think right now, they need all the prayers we can give them.

Thank you!

The Guilt of a Writer

2010-03-02T12:10:00.003-05:00

I'm guilty!! I'm guilty! I admit to it. I don't know how I let a whole month go by without blogging. Shame on me.

Tim got out of ICU early February and since then he has had a bleeding ear infection. On antibotics for that. Otherwise he is doing pretty good. He will be on a ventilator but not with a trach. He had a new Mickey g-tube button put in too. His feedings are slower but longer through out the day.

His father, Vic. Well. LOL He feels he does not have to pay "child support" because Tim is no longer a child. Doesn't matter, it is court order due to Tim's disability. Doesn't matter what he thinks, its what the courts says to do. I can't believe Victor is that naieve or stupid to think this. He is using it as an excuse not to pay anything out. He rather put the money in his $800,000 house and all those taxes he has to pay into it. He values his house over his son. He uses NO common sense. None whatsoever. He really needs a slap in the back of the head.

I've been sleeping alot....and yet I still feel like I need more sleep. I'm always feeling so tired. And always feeling like I have to eat too.

I've not made any attempts to sell the cookbooks this lastmonth and I really need to get on it. I still have 396 books to sell and I need to pay the publisher back and I need to raise funds for the Homecoming. However, I feel at times many don't takes me serious about the sales.

Let's see, what else has been going on.

Well the Ladies support website I started for peer support. We are starting up our support (Live) today. Hoping people will show up but making a bet I will be sitting there for a hour by myself....again. I'm wondering maybe this is just not going to work out because I'm leading out and maybe someone else whom may be more respectable should do it. But no one is willing to lead out. So I'm in a loose -loose situation and ready to just give up. I have to find a way to help make this work. I'm to tired to think right now.

Amazingly our electric bill was only $100 this last month. I think cuz we were gone for nearly 3 weeks in ICU. I pray it will stay down. Right! LOL I've been praying to win the lottery too.

Did anyone watch the Batchelor last night. OK...he is gorgous but still needs a good slap too! Its bad enough he let Ali go...then was a fool to let Gia go too and then Taynel (sp?). But I'm glad that Ali is going to be the next Batchelotte! Woooohoooo! You snooze you loose Jakey boy!

Well ...Tim actually wants to get up and get his day started. All MY children will be on soon...and I would like a "quick"nap before that starts but the amount of time it takes to get Tim up and set up...the nap is right now out of the question. Ha! HA!

I will try my best to be better in blogging this month and try to catch up on those on my list. I apologize I lurked when I really should had participated like a good girl.

Hope everyone is doing good!

ICU Pyschosis

2010-01-27T10:37:00.002-05:00

The last seven (7) days have been quite stressful for our family. Dealing with an chronic illness that leads you to ICU for more then 3 days can even put you into the ICU pyschosis state.

Tim has been in ICU since Friday night after spending nearly 13 hours in the ER. At first they were not sure what he had, then it was something viral then it was Viral Pnuemoni then it wasn't. Of course then it changed and said has an infection in his stomach then his kidneys. Pretty much I dont know if these doctors know exactley what it is as it changes every day to something or the other. Its like come on....you took enough tests now so you have to have some type of reasonable answer (if they know what that is). They have me so confuse now.

Currently he is stable...at least his vital signs are showing that. There was a scare when his potasium dropped to low, his sodium was to high and everything else was whacky. They almost had to intubate him when an alternative popped up and worked. He has been experiencing ICU pyschosis-lack of sleep for days. He started to see things...like green sea weeds wandering around the room. I jokingly teased him and told him he has been smoking pot. He laughed with us.

He has been on te bipap w/O2 now for 7 days straight with no break. This is unusual for him. He usually only wears it when he is in bed and all other times he doesn't. So I'm not sure what to feel or think ...well I do, when they take him off or try to and how his body or his respiritory going to react now that it is so dependant on it. Know what I mean. My fear is that he will depend on it.

I'm tired...but can't always sleep. I'm stressing out a little bit. I need to get out to get these cookbooks sold and yet afraid to leave his room. I'm suppose to do a local farmers market and Sunday hopefully be in Orlando to do the Health fair. Still praying and crossing my fingers that will happen.

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Physical therapy came and we sat him up at edge of bed for about 10 minutes. We took off the vent to see what will happen. He manaaged to keep his O2 level up to at least 91 for that time. Plan to sit him up on a chair tomarrow. So it looks like it might be a thumbs up!

I need a nap...first some chicken nuggets.

later!

Mix feelings of getting OLD...

2010-01-17T05:00:00.003-05:00

It was my birthday on Friday. Yep...hit that last number for my 40's. The big 49. It's just only now months closer to that big 5 0 ! People keeps telling me that it is not that bad, not to fret over it. I just don't like the idea of getting "old" and that seems to be a step of getting old. I just don't want to get old. I like my young life and want to keep at that way. Isn't there a way to freeze time or our bodies so we won't get "old"

I know its nothing to get fret over. Many whom I know (including my older siblings) are now in their 50's. I'm just finally catching up with them. I'm not sure if I even like that idea either . Maybe its a fear I have...the fear of becoming older. The fear that it is a step closer to being 60. Oh my gosh. Now that does sound scary....to me! 60!! I'm almost there. The gray is starting to show. Soon there will be the wrinkles. People say that is just part of life, our bodies knows it getting old even if the mind is in rejection.

I have a good friend who loves being the age she is. In March she will be 60 and she is excited about it. I laugh at her sometimes because she just enjoys her age. Good for her! Yeah!!! but as for me and my bodily houshold..."No way!!" Just no way. I am having a terrible time accepting the age thing. I don't know why. I just don't want to get old!

So....right now I'm not anxious about the age thing as I am over some other things and its giving me alot of mix feelings. I have been trying to sort out my feelings the last week or so and I don't know what to do with them. I can take a "chill" pill and sit back and just let my feelings work me. I think I've been doing that. Probably why some of my feelings has put me on the "suicide" boat too. Anxious ...fustrated....confuse....racey....stressing....feeling lost...feeling rejected (not sure why)...shall I go on. I had a feelings list printed out and so far although people have a wonderful way of complimenting me and supporting me in so many different things in so many ways, I felt the list made me feel worse. I know! I know! I know! it sounds plain stupid and crazy. Your right! I won't dispute that & I surely won't deny it. But can you understand why now I'm feeling confuse.

So until I work out my "mix feelings" my blog might have some strange posts. Don't worry. I'm NOT crazy....yet! I can assure you if I was, I could not sit here at 5am and write this blog.

So it was my birthday, I had a pretty much good day. I'm hoping that many who still would like to grant my birthday wish that they will buy the cookbooks with our FREE SHIPPING special. IT's Martin Luther King's birthday too. Just a bunch of cookbooks that needs to be loved, adopted into a loving home and it will make many folks very happy. Hey...are you willing to adopt a dynamic colorful delightful cookbook. Why not start today ...or right now and adopt one today! It needs no health insurance and bears the experience of many cooks!

www.fromheart2home.org

Life's Journey with winter blizzards

2010-01-09T04:00:00.003-05:00

It is 3:30 am...on a Saturday morning. It is calling for snow or whatever they want to call it for here in North Florida. I'm questioning our "florida boarder patrolman" to why they seem to can't read the sign at the board that clearly reads, " NO COLD WEATHER OR SNOW ALLOWED!!!" Keep out! Stay away. I moved to florida to get away from all that not to bring into this so call "Sunny" and warm state. I'm afraid to leave the house now. I had to cancel a support group today becasue I didn't want to deal with it and I surely didn't want my peers to do deal with it. Just common sense.

This cold weather and perhaps snow has really stepped over the boundaries. Without permission it entered into our lives....because of global warming? Are we sure about this? (shaking head...no!)

Like in life's journey, we often have our "winter blizzards" that seems to settle into our hearts and we often forget our own boundaries in life. What we let in and what we let out of our hearts. We learn to be careful what we say and to whom and why. It can either break someone or just clearly chase them away unaware that our actions and words can cut like a ice blade.

I know recently I had some boundary issues with my therapist of something I said about me and not realizing how it will affect her as a person and those around me. but sometimes, we just don't "think" about that when our own "blizzards" are just sworming all over the place and pilling up ...being slippery in life can hurt many not intentionally but it happens.

I don't want this "winter blizzard" in my life as other things I know often pop up. What are your "winter blizzards" and how do you shovel it out of your life? In life's journey, how do you handle any of your many "winter blizzards" ?

A Sister's Keeper

2010-01-03T00:39:00.003-05:00

Happy New Year! there is nothing like a real good tear jerking moving. But what is more marvelous is that the movie is not just about good script, good acting, good story, etc...etc...but most importantly the message it leaves behind.

Sometimes in life, we have people, including family members, that come into our lives and then suddenly they are gone. We don't understand why, muchless how come? The pain of loosing a love one or a good friend is more often unbearable. to many of us who suffer from grief, it is unacceptable.

ok...I know I have a point here. I really do. but as my eyes tear up, I think of the many who have passed this last year who may have......

bbl

Happy NEW YEAR Everyone!!

2009-12-31T19:06:00.003-05:00

It is 12/31/09...the last day of this year. We are at the end of one year and the beginning of a new year. A new fresh start no matter what it is we have chosen to do to make the new year a better one for ourselves. we are blessed for the bountifuls that God has provided us this last year. Friendships, family, reconnecting with many friends on FB...and to many maybe even reconnecting with God.

I wanted to share with you the newly published (hot off the press) Cookbook that I had published for my Academy Alumni Association with the help of my (former) Academy classmates!

You can read all about the lovely From Heart to Home cookbook and what people are saying about it at its' website: This delightful & color, padded 3-ring hard back cookbook has nearly 700 delicious vegetarian & vegan recipes. A delightful & delious way to stay healthy!

Are you looking for ways to live & eat healthier? Want some nutrients for your family? Want to make changes of your eating habits? Look no further! From Heart to Home Cookbook can help you with all of this! Here is your start for a New Year's Resolution! Enjoy our tasteful & delicious meals.

enjoy!!

Almost 700 delicious vegetarian & vegan recipes

Over 8 categories including Breakfast dishes

Kitchen & Cooking tips

A colorful 3-ring padded hard back cookbook

Recipe Envelope pocket

Ability to add more recipes to cookbook in near future

Colorful round tabs-easy to find recipes

Contributors & Recipe indexes

Budget-friendly ingredients

This cookbook is on sale today- last day for only $26.50 (includes discount & shipping). Regular price is $31.50 (including shipping). Get the most out of your money by purchasing your cookbook TODAY at a 20% discount. Beginning January 1-2, 2010 there will be only a 10% discount off our regular price with this email only!! (Discount Code newyrdisc) . Help us raise funds today by purchasing this delighted cookbook...it is also great for gifts.

http://www.fromheart2home.org/

We also have a Business Partnership discount. If you are a business owner, purchase a minimum of 10 cookbooks for only $185.00 (plus $15 shipping) or a case of 18 for $333.00 ($18.50/book). You can download forms at the http://www.fromheart2home.org/ website. Must have a business name and EIN#.

We also have an Incentive program. Sell your first (5) five cookbooks to family and friends and get a FREE COOKBOOK!!

Discount specials does not apply to Business Partnership & Incentive programs.

We are accepting checks and mail order by postal mail and Credit cards and debit payment by PayPal.

To download forms to send with payment by mail, http://www.fromheart2home.org/downloads.html

To pay by PayPal, http://www.fromheart2home.org/order-cookbook.html

The cookbook was compiled by the classmates of Stonecave Homecoming Association, Inc.

From Heart to Home- A Vegetarian Cookbook is the official fundraiser for Stonecave Homecoming Association, Inc for 2009-2010. Stonecave Homecoming Association is a 501 c-7 non-profit organization. It is an Alumni (sister-affiliated Academy) Association for 4 SDA Academies (all four are closed down but the association was established to keep classmates connected). Funds will help with the educational seminars and peer support groups at all homecomings/reunions.

Its goal is to REBUILD FRIENDSHIPS, RECONNECT CLASSMATES, & REUNITE ALUMNI.

Please share this e-mail with YOUR family & friends! Thank you for your support in helping us accomplish our Cookbook Campaign today!

Always!

Dee Bird, Executive Director

Stonecave Homecoming Association

http://www.stonecavehomecomingassoc.org/

From Heart to Home- A Vegetarian Cookbook

http://www.fromheart2home.org/