Likely new addition to the Mosaic DS family

August 7, 2012

Hi all,

I've requested to join the fb page as well, so I may post this exact msg there

as well (sorry in advance, for those getting it twice!) I'm the proud sahm of 5:

9 yo daughter, 7 yo son (with several rare, serious medical conditions), 6 yo

son (with challenges from severe ADHD), and 16-mo boy/girl twins. My 16-month

old son is in the process of being tested for mosaic ds, and I'm nearly certain

that the test is going to come back positive. It would explain 100% of the

challenges and struggles he has faced in his short life thus far, though I must

say that my husband and I really thought we'd dodged a bullet with our twins-

they've been quite healthy and done quite well (especially in comparison with

their oldest brother who has a very uphill battle)! I now feel as if I've fallen

off a cliff almost.

I suspected ds at birth for him, based on appearance only. But I didn't say

anything to anyone, I was too afraid of the answer. I've kind of ignored that

internal voice, and had finally all but silenced it by the time he was 1. But

as we've gone to specialist after specialist trying to figure out why he is

delayed (especially more than his twin sister), and the peculiar nature of his

delays, I keep coming across ds over and over as a possible explanation. His

physical therapist says his motor difficulties and appearance strongly " suggest "

ds to her, and I suspect she's 100% right.

I don't even know what to do with my emotions. There's a part of me that wants

to not know the answers to the testing- I'm so afraid it's already changed my

perspective a bit and I don't want it changed more. There's another part of me

that wants to get the answer, double check the health concerns of ds (just in

case), and never ever tell anyone else that he tested positive for it- I mean,

if the drs haven't picked up on it by 16 mos, maybe no one else will either! Or

do most kids with ds (mosaic or otherwise) " pass " as typical in toddlerhood? I

feel awful for even suggesting keeping it a secret. But I dread the looks on

people's faces- 3 out of 5 children with special needs, all of my beautiful

boys. I dread my family treating him differently, I dread worrying about the

future for another child; I already know what that feels like- I've lived it for

7 years now! DS is just so final, no cure.

Please forgive my heartless thoughts here. I'm absolutely grieving for my baby.

I just don't want him to be burdened with a lifelong diagnosis. I want my happy

go lucky, sweet baby boy back. In some ways, I wish I'd never found out about

mosaic ds, and he could live his life free of any diagnosis. My heart is

breaking for him, and his twin.

How did you get through the diagnosis? Did any of you find out this late? Thank

you, in advance, for any support you can offer.

Leah

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