Tuesday, October 04, 2011

Can you love Down syndrome?

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.

At all.

Is that weird?

Am I stepping on some sort of landmine here when I say that?  (Gosh, I hope not.)

I mean I know they have some medical issues that are a result of Down syndrome.  Both girls need heart surgery, and Mekdes also has a thyroid hormone disorder that will require lifelong treatment.  I get that.  All out-of-the-ordinary stuff, to be sure.  Stuff that I desperately wish were not the case.

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!

And let's face it: each and every one of my children, biological or adopted, chromosomal abnormality or not, has unique and special needs.  Things that they need help or encouragement with, or ways that they need me, or ways in which they are, simply, special. 

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.

I honestly never really think about how my daughters could (and will) be labeled by most people as "delayed", "disabled", "special needs", or "the r word".  They're just my kids.  Who need surgery, who need some early intervention, and who need some thyroid meds.  Yes, they do have Down syndrome, but around here?  We think that's pretty rad.  (Yes, I just said rad.  I was also jammin' to 1980s Janet Jackson in the thrift store yesterday.  Because I'm an awesome product of the '80s like that.)

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.

I just know that I'm their mama, and I'm gonna do my very best to help them reach their beautiful, God-given potential, whatever that may be. 

Mostly I know I love my dear, sweet daughters.  Down syndrome and all.


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