I Never Knew I Wanted a Child with Down syndrome

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What feels like a million years ago, I was on the Baby Center Down Syndrome Board. I was immersing myself in the questions, the comments, the endless threads. The talk, the chatter, the crying, the heartache. The “brag”s. One signature struck me in particular, “I never knew I wanted a child with Down Syndrome until I got one.” I still don’t know who originally came up with that – do you? – but I clearly remember the pang in me that I felt when I first read it.

I never knew I wanted a child with Down syndrome until I got one.

At the time, I wondered over it. Wondered at the love behind it, wondered if I would ever feel the same. Wondered if I would lay claim to those words – not for stringing them first, but rather, lay claim to their meaning. Lay claim not just to my daughter, but to her extra chromosome. Because cognitive disability was hard for me. Very, very hard.

Hard to accept, hard to appreciate, hard to wrap my mind around its presence in my life through my child.

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Moxie is three years old now and I can say it with all of my heart, ever fiber that makes me who I am: I never knew I wanted a child with Down Syndrome until I got one. Oh! How we love her.

It’s partly just who she is but it’s also partly the something that the little extra carries with it. Because some of the things that she does and some of the things that we love adore so completely about her are things that we hear from others who are also connected to this tribe.

Like: she can see into my soul. She doesn’t normally cover me in hugs or kisses; she’s usually pretty hands off. But there are moments when I am crippled with sadness – and out of everyone around, with everyone around – she senses it. She comes over, cups my face in her tiny hands, kisses my cheek with matchless tenderness. My child, my heart.

I was terribly cynical for a long time.

Pregnant with Moxie, I’d read things about how much mothers loved their little ones with Down syndrome and I thought things along the lines of, “that’s great, that’s wonderful, silver linings and all, good for them but I’d rather have a kid without Down syndrome, thanks.” I think in my heart of hearts, I didn’t believe it was possible for someone to truly be accepting of an intellectual disability, or to honestly see something anything desirable about it.

And even now, typing these words, I think of the person I was, I think of old friends of mine and wonder if they are reading this, how they are likely to be thinking I’ve either changed a lot or I’m pulling this out of my ass.

I’ll make it easy for you, my friend, by telling you straight up: I’ve changed.

People might say, ‘oh yeah, you can accept and love Moxie and all because it’s easy with her, she’s ‘high functioning’ or whatever.”

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Besides the fact that I hate words like “high functioning” or “low functioning” and I hate how we seem to assign merit to people based on how alike mainstream they are, guess what? Moxie isn’t really “high functioning.” I don’t  know what’s what in all the “functioning” stuff but I do know this: she’s over three years old and maaaayyyyyyyyybe says 5 words. Sure, she understands just about everything we say to her, but she doesn’t talk much.

She’s not some “high functioning” child with Down syndrome. She’s just a little girl. Who has Down syndrome. That extra chromosome contributes to who she is – undeniably so. As I get to know her and by extension, it, I grow to love the whole package so deeply, so completely and…words escape me.

I never knew I wanted a child with Down syndrome until I got one.

I got her.

Comments

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  1. 1

    Eileen says

    THANK YOU for putting into words what I’ve been thinking/feeling for a long time. My DS4 also has Down syndrome, and I too was on the Baby Center boards for a long time searching for some kind of reassurance. I was devastated by his diagnosis, and although I always loved him, I felt like other moms of kids with special needs were faking it and trying to cover up their true feelings. I know how lucky I am now, and having him in my life has changed me in ways I didn’t know I could change. I’ve said (to my husband, because very few others would understand) that our DS6 has my heart, but my DS4 has my soul.

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  2. 5

    Jennifer Scharf Enlow says

    She is absolutely GORGEOUS. Thank you for sharing this beautiful and heartfelt story. As a mother to a child with autism, I can completely relate.

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  3. 6

    Shawna says

    That’s beautiful, poignant and she’s gorgeous. Those who can’t see beyond their perception of “imperfections” have no idea what they’re missing.

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  4. 8

    Amy K. says

    Thank you for so eloquently putting into words what it is like to love an ‘atypical’ kid. My son is on the autism spectrum, and it is so tied up in who he is that the thought of him w/o autism is hard to swallow! Of course I did not wish for the extra struggles that come along with his diagnosis, but when people talk about a ‘cure,’ I always think that I do not want a cure that would change who he is.

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  5. 10

    Shelly Adams says

    My daughterwould have been 4 years old, so I had to read your story! Leah had Downs. I had no idea until she was born premature I might add. I went through those feelings and love grew on a daily basis even though he life was pretty much in the hospital! She had several issues and ended up not staying with us. In the hospital 14 months of her life, passed away at 17 months! I think to myself on a daily basis … “why couldn’t my little girl survived” as I have seen so many who live long lives…. missing Leah so much! http://Www.leahshope.us and as a tribute to her: http://www.leahsboutique.com, also on facebook: http://www.facebook.com/leahsboutiqueandgifts

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