Tuesday, October 04, 2011
In case you didn't know, we now have two children--yes, two!--with Trisomy 21.
Otherwise known as Down syndrome.
Which obviously falls under the "special needs" umbrella, but the funny thing is, I don't really think of my daughters as having special needs.
Is that weird?
Am I stepping on some sort of landmine here when I say that? (Gosh, I hope not.)
And I know they have some cognitive delays. It may take them a little longer to learn to read and write.
And one of them has some physical delays for which we're seeking early intervention. (If they'll ever either answer their phones, or call me back.)
But kids WITHOUT Down syndrome are born with heart defects...thyroid problems...learning delays.
So I'm thinking through all this and processing what "being a mom to children with Down syndrome" means for me. And so far?
So far it means I have two sweet little girls who are pretty much all-around awesome!
Mekdes isn't a "special needs kid"--she's Mekdes!
Tigist isn't a "Down syndrome person"--she's Tigist!
Please hear me when I say that I don't mean to trivialize any of the challenges that people with Trisomy 21 face throughout their lives. (My children included. And, there will be challenges.) I don't attempt to speak for any other mama, especially the mamas blessed with biological children with Down syndrome. I have not endured the trauma of mourning the loss of what I believed was a healthy baby, nor have I spent time with my newborn in the NICU. Each family will have their own dynamic and own way of understanding and processing the way Down syndrome plays out in their child's life. And that's perfectly fine.
As for me, I have to be totally honest and say that, well, I love me some Down syndrome. I DON'T love the holes in my girls' hearts, but I DO admit that I've fallen head-over-heels in love with that precious extra chromosome. Which is a vital and integral part of who my daughters are. They're not defined by Down syndrome or "special needs", but they wouldn't be who they are were it not for those extra copies.
The fact is that all seven (yes, seven) of my children have needs. Every last one of 'em. And, they always will. I figure being a mother is a lifelong pursuit, filled with joys and sorrows and lots and lots of love-put-into-action. I can't know the future, or say for certain how much Mekdes and Tigist will "do". I can't know what tomorrow holds.
Mostly I know I love my dear, sweet daughters. Down syndrome and all.
Can you love Down syndrome?