I Never Knew I Wanted a Child with Down Syndrome

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.

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.

Advertisement - Continue Reading Below

Advertisement - Continue Reading Below

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.

Related post: 5 Compliments You Need to Stop Giving About Children with Down Syndrome

About the writer


Meriah's a deaf third culture kid, married to another third culture kid and raising a new generation of third culture kids. She is currently traveling the Pan American Highway with her clan. You can follow their travels and stories on her blog, With a Little Moxie. You can probably also visit her – if you bring marshmallows with you.


A. 2 months ago

You didn’t.

A.C. 11 months ago

The Academy for Precision Learning (http://www.aplschool.org) is a K-12 school that provides a nurturing, inclusive, and individualized learning experience for neurodiverse students. APL offers targeted opportunities that promote the academic achievement and social development of students who benefit from a smaller, supportive learning environment. Students are engaged in developmentally appropriate, data-informed, individualized experiences that put them on a path to achieving their greatest potential. APL meets our students where they are at, supporting each student to build on their unique strengths to become a curious and engaged life-long learner who celebrates diversity, practices self-advocacy, and generates impact in their community.

Jessie S. 1 year ago


Alexis Lois Beecher Dyke 1 year ago

So sweet, so loving.

Carolina Cuevas 1 year ago

Powerful message

Nara 1 year ago

I really appreciate how real this article gets about how hard it is to deal with intellectual disability. It’s something I’m having a hard time dealing with right now, a developmental disability diagnosis, and I actually almost posted this under a different name because of it. Seriously. Because some things are just hard. And not harder than, say, physical disability or harder than dealing with an identical developmental delay, but just hard because of how I personally think of it, like, damn, my kid will never, ever, ever get to go to university or be an astronaut or PhD or doctor or lawyer or engineer no matter how friggin’ hard he tries, ever. And that is a really difficult pill to swallow.
Props to you, author. Things like this are not easy to live about or write about. Good on you.

Amanda N Jesse Cooper 1 year ago

Who could possibly not?

Anonda Risse 1 year ago

Love this!

Marlies van Bloois 1 year ago

Wonderful story <3

Jami Poole Garcia 1 year ago
Melissa Palinkas 1 year ago

Love ❤️

Trianna Landon 1 year ago

Love this!
Thanks, Scary Mommy, for helping celebrate WDSD!!!

Christina Edwards 1 year ago

I must admit – I am very ignorant to the potential of a Down Syndrome individual to live independtly once they’re an adult. Is it wrong to think a “positive” is being able to have your child with you forever? That would be such a blessing in my opinion. Love this article!

Rita 2 years ago

I am due to deliver my baby girl any day now and she has been diagnosed with Down’s. I still have fear and sadness for her future without her father and I to be there when she needs us.
However, I feel as strong of a love bond with her as I did/do with my first child, also a girl.
Your comments and emotions are right on the nose with what I’m experiencing, so I just wanted to say Thank You for sharing. :0)

Mayra Lorena Pocasangre Miranda 3 years ago

I have a 11 years old daughter with Down Syndrome, and alll I could said is had been 11 years of joy and happiness in our life. We are so blessed, we always have happiness around us.

Kerri 3 years ago

I never knew I did either, until I became a step-mother to my amazing step-daughter, and now, not a day goes by that I don’t wish she was mine instead!!

Susan Pentony Cully 3 years ago

This is a fantastic story and I agree with you 100%. I always say my daughter with Down syndrome makes ME special. I don't know where I would be without her.

Peter Kaczmarzyk 3 years ago

I feel like you have ripped the words out of my heart and placed them on my tongue, but I don’t want to say them, because you have said them for me

Linda Higgins 3 years ago

Oh yes! I am right there with you!

Melanie McLaughlin 3 years ago

So beautifully true. How could we have known? We had to be shown….

Dana M 3 years ago

Oh. my. gawd. It's one thing to have a ton of beautifully photographed pictures of a gorgeous little kid, and another ENTIRELY to have her running around in an adorable hammer-and-sickle teeshirt. (drops dead of the adorableness).

    Jen Cormier 3 years ago

    I am crying so much. That was beautiful. What a sweet, tiny lady.

MomChalant 3 years ago

What a beautiful little girl. What I love so much about kids with disability is the pure happiness they have. It’s like they acknowledge that they’re a little different and embrace it to the fullest. Every picture in this post embraces just that.

Thank you for sharing : )

Lauren (Don’t Lick the Trash Can) 3 years ago

This was beautiful!!

Karen Overzet Playford 3 years ago

I have a precious 15 year old boy with Down Syndrome who brings so much joy as well…. not a "burden" as some would think, but the opposite is true! I didn't know I wanted a child with Down Syndrome…. until God gave me one :)

MILF Runner 3 years ago

This is truly lovely.

Jess 3 years ago


Pam 3 years ago

Very well said! We have been where you are. Your life will be an adventure very few get to experience. True love in so many ways! Enjoy the journey!

Joanna 3 years ago

Have read this repeatedly today and it still brings tears to my eyes. Love the shirt, too!

Jennie 3 years ago

Great post!
(Julie Kehm was the one who said that on BabyCenter) :-)

Lola Rae Alstrin 3 years ago

this article was well written. as a parent of a child with a birth defect, I couldn't agree more.

    Andrea 3 years ago

    LOVE this post. So moving. And I was wondering that about the shirt too!?!

    pam 3 years ago

    Meriah, your daughter is adorable. I have have a nephew with Down Syndrome who is such a joy and we just love him so much!

    Lukas Benke 3 years ago

    The most logical thing would be that the mum is a communist, which would be totally awesome. The world needs more awesome, nice, caring and political aware parents :) .

Lauren Scheuer 3 years ago

Thank you for sharing your Moxie, and your feelings.

Colleen Harriman Davis 3 years ago

I'm sharing this with the parents of my students. Love your kids' shirts by the way.:-)

Rebecka Jochum Miller 3 years ago

omg I love this!

Lisa Nelson 3 years ago


Meriah 3 years ago

Thank you all SO MUCH for the love.
The t-shirt! Haha. That was just what she was wearing, it not some intentional message. My dear friend bought it in Laos and sent it to Moxie, partly because she knows I like retro things like old communist flags and partly because I had given her a t-shirt from Cambodia on the warheads and landmines there. Long story for a short answer, huh! It really was just not intentional

Stephanie Elizabeth Small 3 years ago

How beautiful! Brought tears to my eyes.

t @ Happy Soul Project 3 years ago

Another beautiful post Meriah…So honest & real…Love that and I’m sharing on Happy Soul Project…

Stacy @ Life on Three Sides 3 years ago

Beautiful Post. I imagine I would have felt just as you did, and changed, just as you did. I love that you are willing to share it all. Thank you!

Shelly Adams 3 years ago

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

    Rita 2 years ago

    Thank you for sharing… how painful to have such a loss, my heart goes out to you.

Kat 3 years ago

I think you just made all of us fall in love with Hannah too. This is so beautiful!

Amy K. 3 years ago

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.

Mercy 3 years ago

Beautiful and heartfelt.

Shawna 3 years ago

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.

Jennifer Scharf Enlow 3 years ago

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.

Amanda 3 years ago

Beautiful post

Teresa 3 years ago

Beautiful words. I have a child with autism, and while that’s not quite the same, I can somewhat relate.

Shayna Zeld McCarthy 3 years ago

What a beautiful girl.

Eileen 3 years ago

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.


Enjoying this? Then like us on Facebook