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 intellectual 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.
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.
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.
Swift moving child of light
Exuberance and femininity, personified
She is a child with Down syndrome.
Strong willed, creative, musical. Rhythmic.
She understands the world in her unique way, one in which I am learning and growing into
I never knew I wanted a child with Down syndrome until I got one.
I am infinitely grateful I did.
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.
Beautiful.
Just beautiful, Meriah! I never knew it either, and I think few people CAN know it in advance, but oh, do we have a beautiful life with our sweet girl.
That was an absolutely beautiful reflection. Thank you for it. I do have a question. The Soviet Union systematically destroyed or neglected kids like ours. Why the shirt?
James, the shirt was a gift from a dear friend who purchased it in Laos.
It’s not an ad for the Soviet Union. But I think to point fingers at the Soviet Union is to point our fingers right back at ourselves: we did the same things we deplore about them, even within our own lifetimes (or mine anyway).
To help change it, we need to work on the legal aspect and the passing of the UNCRPD.
We may disagree on history, and policy, but we agree that our children have tremendously enriched our lives. Your daughter is beautiful! Thanks for the great reflection.
Gorgeous.
Almost as if I had written this myself. This is beautiful!
Me neither 🙂 But the last 19 years have been one heck of a personal discovery not to mention over 8000 days of wonderfulness.
& I really understand “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”
Luke ALWAYS knows if I am sad or ill or in pain.
Best wishes for fulfilling all your dreams x
What a wonderful, raw and honest piece. I can relate to you so well. Thank you 🙂 Moxie is gorgeous! My little one is 4 and she is my reason , my joy, my life.
Love it! That is one of my favorite’s too
…and I believe it’s on A Perfect Lilly’s blog, too 🙂
Tears I so feel the same way I also think cognitive ability is overrated and is actually destructive if it isn’t combined with spirituality, humility and kindness. It becomes arrogance egotistical and worse Moxie continues to remind me what is important – as a spiritual being in a very temporary human garment soon to be gone – and all that will be left is any love,virtue, unity, and service I was able to contribute to during this fleeting life.
Um yes, she is perfectly made for you, by you! Perfectly lovely. Meriah, you are really blogging right into my heart! I love that I felt the same way about my Stefi! So Julie Kehm owns that phrase. She beat us to the feeling… But, we live it everyday! I love your honesty!
Perfectly put! I never have noticed that signature but it explains my life perfectly.
Moxie is a georgeous little girl , i hope you all reach those goals that you spoke about. I truly feel that our little man with DS is a gift to be treasured and will teach others in his life about what is really important – to love and be loved in return.
As a teenager with Down Syndrome once said…its “A life worth a life”.
My son is 29 and in many ways going through a period of teenage rebellion. We now have hours where the extreme joy I feel in having parented him is counterbalanced in ways I never thought possible. I tell myself this will pass its a developmental milestone. And it does pass and he returns to being the most amazing gregarious, joyful, caring, loving person I know. I am so proud of the man he has become. I used to think he was perfect, these times have proven he is not perfect in that angelic way. I really do think that’s better. I know he will always stand up for himself and I don’t fear he will be taken advantage of anymore. Life is good with Teddy in it.
Hey Meriah! I saw that you shared my/Corbett O’Toole’s link on facebook! And when I first saw your name I thought hmmm that name sounds familiar, where have I seen it before?? And then it dawned on me! I have been following your blog for quite some time 🙂 Your blog was one of the many that I tried humbly to model my own blog after (PerfectlyImperfecta) — your star trek post is still one of my favorites! Anyway, I hope that you’ll consider submitting a letter. Your writing is lovely! (And if for no other reason than the fact that you already know you have one young woman who looks up to you very much…ME!)
Oh wow, this totally made my day, Sandy! THANK YOU!
I’ll write!!
xoxo
What a fabulous, fabulous post, Meriah, full of breathtaking pictures of your gorgeous children. 🙂 I never knew it, either, and am so, so glad I do now.
Yes. One of my very favorites, as well.
I love coming back to read this over and over. Just shows you never know who you will leave an impression on❤️
🙂 thank you!