[tri-med] Re: life excpectancy

On Apr 5, 2009, at 3:06 PM, G&S wrote:

>>
>> .>>>I remember when
> Keren was born reading one of the trisomy books put out by SOFT, and
> it spoke of the common causes for death in our kiddos (respiratory
> issues, apnea, cardiac issues--to name a few).<<<<<<<<<
>
>
> AND it also depends on how much medical intervention is given  or  
> offered,
> so often our Triers are not always given the medical care a typical  
> child
> would. ( little bitter here)
>
You are so right on this, Sue.... This is one of those things Kraig  
and I have thought about. We were blessed to have doctors who DID  
give Keren so much help, not to mention teachers and therapists who  
thought outside the box, seeing Keren as an incredible kid whose key  
they just needed to find and we'd all be able to "get her". But there  
are SO many families out there--you included--who have the horror  
stories of children being neglected because of a label.

....I was talking with Keren's teacher the other week and she  
mentioned that in their school (130 special needs kids from about 5  
local districts) there are four girls with Rett's Syndrome (sp?). I  
was asking her for more of a diagnosis of what it was since I've  
known a few of these kids. Interestingly, it's one that goes with  
chromosomes (if I understand it correctly), but it doesn't show up  
till after birth.... Another interesting point is that I haven't come  
across another trisomy child (besides Down's kids) in the school (as  
I said, from five districts). How much of that is because these kids  
just couldn't survive versus didn't get the chance to survive (before  
or after birth)! It's a sobering thought. And I look at how much  
Keren progressed and learned in her years--she was moving forward!  
Rett's, on the other hand, is a degenerative disease.

Okay, potentially hot topic.... I'll stand down :) .

>
> <<<<<<<<<but in retrospect, I'm sort of thankful Keren left us so
> quickly. We weren't placed in a spot of having to make extremely
> difficult choices.... <<<<<<<<<<
>
>
> I so agree with you Loren.  Its easy to play the what if game, and  
> hind
> sight is 20/20. Rebecca was fine on the Wednesday, cold started on  
> Friday,
> had an emerg visit in the wee hrs of Saturday and was gone Sunday  
> morning, I
> have to tell myself that it is better than a long hospital drama  
> and making
> painful decisions


SO true.... I've had to put my boxing gloves on a few times to fight  
the "what ifs" and all. Sigh! When my vision clears, I realize how  
much better it was that God chose this way...even though if I had my  
druthers I'd take Keren here with us still!

Loren (wife to Kraig, mom to Keren Elyse, T18, (9/27/02~1/28/09),  
Clarissa Joanne (7/17/05), Evelyn Ruth (4/26/07), and baby BOY due  
(EDD 8/6/09)
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075
http://picasaweb.google.com/LorenWarn

?You God formed my inward parts; you knitted me together in my  
mother. I praise you, for I was fearfully and wonderfully made.  
Wonderful are your works; my soul knows it very well. My Trisomy body  
was not hidden from you when I was being made in secret, intricately  
woven together. Your eyes saw me as I was. In your book were written  
every one of those details. You knew every day that was made for me  
even when there was not yet one of them.? (Psalm 139:13-16,  
paraphrased by my Dad when Keren died)



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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