Saturday, May 1, 2010

Exotic and rare

Labels...before Jake was "Fragile" now he is considered "extremely rare" like some exotic creature. Jake's neurologist said wednesday that he believes Jake has Kabuki Syndrome on top of Fragile X. How many more labels can one little boys genes require? So far we are up to three rare conditions...Fragile X, Kabuki, Pseudotumor Cerebri...and the less rare but still a major pain..Celiac disease. The odds of a child having one of the three big ones are unlikely. The odds of a child having all three....unheard of. I swear next time we are at the hospital I am going to charge all the interns admission to come in and stare at him and build Jake a nice trust fund!

Wonder by Natalie Merchant
Doctors have come
from distant cities
Just to see me
stand over my bed
disbelieving what they're seeing

they say I must be one of the wonders
of God's own creation
and as far as they can see they can offer
no explanation

I believe Fate smiled and Destiny
laughed as she came to my cradle
"know this child will be able"
laughed as my body she lifted
"know this child will be gifted
with love patience and faith
she'll make her way"

people see me
I'm a challenge to your balance
I'm over your heads
how I confound you
and astound you
to know I must be one of the wonders
of God's own creation
and as far as you can see you can offer me
no explanation

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