Saturday, August 4, 2012

Community Healthy fair

We will be having a COMMUNITY HEALTH FAIR on September 9 from 2-5pm at the Gainesille SDA Church school gym. There will events for the kids and for kids all ages with lots of goodies. I will also be selling my cookbook there. Come all to celebrate healthy living


Tuesday, November 1, 2011

A Love Letter to Duchenne Mothers

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!

Thursday, October 13, 2011

Campaigning to Save Lives

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.

Sunday, September 25, 2011

Professionalism of Nursing Care

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.
 

Friday, September 9, 2011

Remembering Academy (high school) days

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..

Thursday, September 1, 2011

Coach to Cure Muscular Dystrophy


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

or



Thank you for your Support!

Wednesday, July 20, 2011

I am a Mother....

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?