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.










*HUGS* TOTAL!
give Javad more *HUGS*

Get hugs of your own







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:

E-mail Author: smashintwo66@yahoo.com

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 18176 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.