Thank you Jocelyn. A mix in the cake. Good analogy. I have always wished I
could have gotten a straight answer from the neonatologists. It is very
difficult when there really is no textbook answer for the Trisomy 13 or 18
condition.
Ruth (Jill's Mom 2/9/06 - 2/27/06)
Jocelyn <jknowd@xxxxxxxxxx> wrote:
The difference you have pointed out here Ruth, is that YES all the
Trisomy babies are DIFFERENT. I think a lot of how they respond and
"thrive" or not, is due to the mix in the cake (to use an analogy I
gave my grandchildren when first explaining about Tess). No mother or
father should beat themselves up about choices, there are so many
different conditions to consider in each individual child, that I
think it becomes like the chance of winning the lottery. You can only
treat your child to get the best out of that particular childs
"conditions". As I have said before, Alex Schuler is a very high
functioning Trisomy 18 boy, but I would not swap his mix of genes,
that affect his day to day life with Tess's for anything. She just
happens not to have some of the life threatening conditions he has on
a day to day basis.
At 07:28 AM 15/07/2006, you wrote:
>I
>
> I keep reading stories of other Trisomy 13 babies, and it is so
> disconcerting
>that so many babies live without any extraordinary measures a lot longer than
>Jill ever did. We just didn't want her to suffer and feel an ounce
>of pain, but
>we didn't want to contribute to her death in any way. I hope I didn't. I
>couldn't live with myself if I thought I had shortened her life in any
>conceivable way.
>
> Ruth (Jill's Mom 2/9/06 - 2/27/06)
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