Re: Chiari: Passing it on

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In a message dated 8/11/99 11:12:23 PM Central Daylight Time, ronny@...

writes:

<< And even if it were, I don't think we have any moms or dads on

the list who would reverse the decision to have their kids had they known. >>

Believe me the thoughts to reverse my choice of having children are

definately non-chiari related. (Normal, typical adult kid trials and

tribulations) And they have passed thru my mind quite a few times, lol.

However facing the fact that 's chiari has more than likely been passed

down from me has not bothered me significantly. I know that I would not have

done it intentionally, and there was nothing short of not having any children

that could have changed it. But to think of not having : what a loss,

not only I, but everyone who's life he has touched would feel. These

special children bring so much awarness into your life. I have learned

things from in his short seven years on this earth that I had not

know existed in the 40 years I lived before his birth.

He has taught me the important things, mostly the true meaning of

unconditional love!!! And all the things we worry about in life, are really

so petty...What is important are the things we so very often take for

granted, like our health, and simple abilities like eating, walking, talking

and breathing!!! He was a renewal of faith...because believe me I have never

prayerd so much as since the day he was born!!!

He was born without the use of his legs but had the ability to eat til

he was a year old, and the ability to talk and breath normally til he was

five and a half. To loose these would devestate most, but he has never

looked back. I truly think it bothered me more than him. He always has a

smile, no matter how sick he is, to share with the world and never meets a

stranger. He awakens everday with a big smile, a kiss and a " I love you "

for me and his Papa and a joy and love of life we can not even fathom...

I thank God everyday for sharing this special Angel with me, giving me

a glimpse of heaven and a taste of hell (the anguish and pain when is

sick and hurting).

Love, hugs and prayers, Haydee (Nana to 7 1/2 yrs old

w/Spina Bifida, ACM II, Hydrocephalus w/VP Shunt, Syringomyelia w/syrinx

at c1-c2, G tube fed (totally NPO), Seizure Disorder, Swallowing Coordination

Disorder, Dysphagia, Neurogenic Bladder, ARDS (Lung Failure) 3/30/97, 33 days

on total Lung Bypass (ECMO) 60 days on Life Support, now Humidified Oxygen

Dependent, Radical Tracheostomy w/total loss of Vocal Cord Use, Paralyzed

from the Waist down, 18 surgeries, Asthma, Severe Latex Allergy, Allergies to

many medications, Adhesives, and tons of other stuff,and one crazzzzy Nana,

living right outside Baton Rouge, Louisiana. On March 2, 1999, had a

Posterior Fossa Decompression w/opening of Dura (No Graft), Laminectomy of

c1-c2, w/major immediate improvements in symptoms and so far, getting better

and stronger every day!!!

's web page ~~~~> <A

HREF= " http://www.pressenter.com/~chip/joshua.htm " >The

Story</A>

http://www.pressenter.com/~chip/joshua.htm