Mosaic Down Syndrome vs. Down Syndrome, and the Landscape of Hope

I am a member of a group for Mosaic Down Syndrome (MDS), and this week my list mates posted pictures of their children with MDS.  For peoples with MDS, like Amelia, the outcome is different that regular Down Syndrome because some of their cells have 46 chromosones, rather than all with 46.  When cells regenerate, they know to only replicate the “good” cells, so as a child grows, they have less and less 47 chromosone cells, which are responsible for disabilities.  Now that we know that even brain cells regenerate, this is a good thing and these children can “improve” (for lack of a better word) in all areas.

As I said, this week photos were shared, and the gist of the conversation was how they children looked less like they have DS as they grew older.

This was difficult for me, because I feel as though I’ve noticed it more as Amelia has grown.  Like as a baby, you either thought nothing or something indefinable was different, but now you can see it.  Is it her reduced speech ability? Her immaturity?  Is it that I’m more versed now, so I see things more?

Is it me??

You walk this line, with disabled children, between hope and realism when it comes to looking at their future expectations.  My dear friend Katrina wrote an excellent post on expectations and goals about her daughter who has Down syndrome, that nails a lot of these issues.  Around here, this onus is on me.  You wonder, am I doing enough? Too much? Just right? *I* wonder, Would Amelia  be further along if I were a better mother?

These are all part of the reasons I’ve left my job.  I feel like I’ve got to do more, like I can do more, without making this home of theirs a 24/7 educamp.  That’s not appropriate either – kids need to be kids.  But for me, I cannot juggle all these things AND organize discipline and educational systems and nutritional issues without significant time input. I just don’t have that skill, I’m not a nurturer by nature.  (BTW, I could write a treatise on why I think motherhood is a choice NOT a calling, but that’s for another day. Maybe.)

What will Amelia be when she grows up? Will she develop past Down syndrome, become “more” typical (whatever that means)?

I don’t know.  My job is to prepare her for life, to make the best of it, to succeed at a level that befits her and no one else.  I feel that I need to be prepared for anything.  I’m not without hope, but it’s too easy for me to let hope rule the day while sacrificing practicality, so I backpedal from it a bit.

I also seeing a bigger issue, though.  What makes a person with full Down syndrome of less value than anyone else? Why do we need to this thing of degrees, of stretching past a disability to achieve a “norm” that is cultural anyway?  Would she, or any of us, feel happier as a doctor, architect, biologist, than as a sales person, secretary, assistant?  All the evidence I see is to the contrary. When I dig deep, it doesn’t matter to me where she ends up on any intellectual spectrum. She’s on her path to be a strong, independent woman. What more could a mommy want?

Even if your child doesn’t have special needs, optimistic future outlooks are in short supply nowadays. How do you deal with the friction between hope vs. reality  for child?