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Javad's Place Look at me! I am FIVE!!!!
Welcome to my page. Thank you for stopping by. In October of 2003, I was diagnosed with Centronuclear Myopathy, a rare neuromuscular disease. This diagnosis came after almost 2 years of a misdiagnosis. I continue to amaze the doctors and other medical staff with the things I do. I live at home with my Mommy & Daddy, David & Shannon, my brothers Adam and Simon, and sister, Stesha. Thank you for stopping by to see and hear about the latest in our lives.
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You have Taught Me
You have taught me patience to rejoice in small gains which others take for granted. You have taught me tolerance to accept that your perspective is different and deserves respect. You have taught me courage to fight for you when no one else will. You have taught me endurance to go on when I feel I can't any more. You have taught me humility to accept when I can't make things better but can only be here for you. You have taught me to love at a deeper level than I ever thought possible
Visit Javad's Place: An organization in the works that is a place for families that have a child with a chronic or life threatening disease to connect. Having these special people in our lives changes how we approach things and together we can make their lives and our lives better! Javad's Place
Sometimes there are those songs that touch your heart...Here's the words to one by LeeAnn Womack.
I Hope You Dance
I hope you never lose your sense of wonder You get your fill to eat But always keep that hunger May you never take one single breath for granted God forbid love ever leave you empty handed I hope you still feel small When you stand by the ocean Whenever one door closes, I hope one more opens Promise me you'll give fate a fighting chance
And when you get the choice to sit it out or dance I hope you dance I hope you dance
I hope you never fear those mountains in the distance Never settle for the path of least resistance Living might mean taking chances But they're worth taking Lovin' might be a mistake But it's worth making Don't let some hell bent heart Leave you bitter When you come close to selling out Reconsider Give the heavens above More than just a passing glance
And when you get the choice to sit it out or dance I hope you dance (Time is a wheel in constant motion always) I hope you dance (Rolling us along) I hope you dance (Tell me who) I hope you dance (Wants to look back on their years and wonder) (Where those years have gone)
I hope you still feel small When you stand by the ocean Whenever one door closes, I hope one more opens Promise me you'll give faith a fighting chance
And when you get the choice to sit it out or dance Dance I hope you dance I hope you dance (Time is a wheel in constant motion always) I hope you dance (Rolling us along) I hope you dance (Tell me who) (Wants to look back on their years and wonder) I hope you dance (Where those years have gone)
(Tell me who) I hope you dance (Wants to look back on their years and wonder) (Where those years have gone)
Faith and Patience
"If children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but HOPE? We have two options, medically and emotionally, give up or FIGHT LIKE HELL!" ~ Lance Armstrong
Please keep the following in your prayers:
Oliver Josh Angel Amazing Jacob Mason
Journal
Friday, February 2, 2007 7:38 PM PST For the latest information on Javad, check out his new blog at Javad's Journey. This blog is being updated daily. Hope to see you there! :)
Friday, February 2, 2007 7:38 PST
Things are going well on our homefront. Javad has been doing great, having days off the vent up to 10 hours. This is wonderful and definitely moving toward our goal of independence from the vent. It also shows how strong Javad is getting. He is still loving school and is learning things at such a rapid rate, it is pretty amazing. We keep remembering that for almost 4 years, he lived a life of an academic hermit, not being exposed to so many "normal" things. This makes him like a sponge at school!
His wheelchair has finally been enlarged to fit him better. It has been incredible, from a boy ho didn't want to be in the chair to a boy ho throws a tantrum when you take him out of his chair!
Overall, life is good. Adam, our oldest, presented his senior project yeaterday. He has created a website for our upcoming non-profit, Javad's Place. It went well. He received the highest marks possible, "excells"! Pretty exciting!
Well, I must go! I just had a tooth pulled yesterday, so I am a bit tired!
Shannon
Read Journal History
Hospital Information: At home with my family!
Emanuel Children's Hospital Portland, OR
Links: http://www.drivingonthehighway.com/ My Mom's Blog http://www.familyvoices.org Family Voices Website http://quiltsoflove.com/quilt_2004/javad_M/javad.html My quilt of love!
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