Re: Likely new addition to the Mosaic DS family

August 7, 2012

Leah,

I felt the exact same way and we didn't find out until she was 6 mos (she was

hitting all her milestones and still continues to at 3). It was the facial

features that led us to believe that DS was involved. Funny enough, she seems

to have that look sometimes and others, not so much.

We have all gone through the grieving process, just as you describe and its

horrible. It took me over a year to get through it and move on. In terms of

disclosure of the MDS, there are a lot of people who do not know. I don't

introduce myself as 'Allysa who has XXX' and nor do I introduce my daughter as

having any special condition. If there is a medical need to disclose the

information, than I certainly will. However, most cases don't call for it and I

think we feel like we're hiding something if we don't. We shouldn't feel

guilty! I love my child for who she is and others should know who she is and

not categorize her by a dianosis. Half of our family does not know because I

don't think they would be supportive. Again, I don't see how it affects them,

so they just know her as a beautiful, fun-loving kid. You may feel like you are

hiding it for the wrong reasons at first, but the more I searched myself the

more I realized it was for the right reasons. Do what is right for you. This

diagnosis will have implications for your child's life, but you will be the one

hit hardest by it because you know life differently. Your child will never know

life differently.

Grieve and talk it out in this forum. It will help you 'normalize' life and

become comfortable with the future. There are very successful adults in thir

group with MDS who have happy lives and families. Having a diagnosis for your

child does not make their lives any different so use it for good - to provide

extra help for your child where he needs it.

Hang in there! We have been where you are and we COMPLETELY understand.

Give your babies a big kiss and try not to worry so much that you don't enjoy

this time with them.

All the best,

Allysa

Likely new addition to the Mosaic DS family

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

August 7, 2012

Hi Leah,

I am also the mom of boy/girl twins (18 months) and they have a 4yo brother, but

my daughter was diagnosed with mosaic Down syndrome. Like you, I had concerns

since she was born, but couldn't actually say the words out loud. No one else

mentioned it; none of the doctors. I asked about all of her little differences

and everything could be explained away, but I always worried. Finally when she

was 4.5 months old I couldn't take it anymore and called the pedi for her to be

tested and she was positive for MDS. To this day, many medical professionals

(doctors, therapists, etc.) still are surprised that she has MDS, based on

physical apprearances. Sometimes, she looks completely typical and sometimes I

can see the slight slant of her left eye, or the 'different' movements due to

her low tone.

I am so sorry that you are going through this. Just know that your sweet,

happy-go-lucky little boy will still be your sweet, happy-go-lucky little boy

even if he does have MDS. It's okay to feel a loss and to grieve. It's been a

year since Lily has been diagnosed and I still feel it and doubt that it will

ever go away, maybe it just lessens? I don't know.

Anyways, you aren't alone in your thoughts or worries. I bet most (or all) of

us have been there. I also have many worries because she is a twin and what it

will mean for the two of them and how it will impact their lives as the grow up,

go to school etc.

I will be thinking about you and if you ever want to talk more, please feel free

to e-mail me.

>

> Hi all,

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