[tri-med] Re: Denise - would some letters from parents help?

----- Original Message ----- 
From: "Jessica Clearfield" <jessclear@xxxxxxxxxxx>

>I have been on the list serve for a month or two now, but have never
>introduced myself.  I am Jessica and my husband is Dan.  We have a 3yo
>daughter, Hannah, and a new 11 day old daughter, Eva, who has a
>translocation between CH4 and CH18.  She has a 4q deletion and partial
>trisomy 18.

Hi and welcome Jessica.
Since you've been lurking for a while you've heard my welcome spiel before.
:-)

We've not been in the heart issue/surgery situation you are.
However, the situation of having to make major decisions for your baby is
one many of us have participated in.

It is HORRIBLY frightening to try and decide what the right move is
regarding the health and well-being of your precious child.
The fear of making a wrong choice can be nearly immobilizing.

For what it's worth: make a list of the pro and con of each issue.
Talk to the experts: medical, parents who have been through this before.
Determine what is right for YOUR family.

Have the faith that you are making decisions based on the best interests of
YOUR child, in light of your family's situation. That is all any of us can
do.

It can be difficult to not play the 'what if' game or the guilt and remorse
game at time. Try to resist the urge.
Trust me, nobody will be harder on you that YOU.  :-)

Best of luck to you and know that you are in my thoughts,
Michelle mom to Alex (22, partial trisomy 14 mosaic) and Molly (18)
MichiganUSA

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

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