Sharing Pregnancy Stories When Your Child Has Down Syndrome

I loved being pregnant. Well, not the whole time. I mean the “being told your child may have Down syndrome” thing was pretty full-on and there was the heat… oh god… the heat in the final weeks was torture.

Oh yeah, and the swollen legs and the extreme coughing at the smell of washing powder and toothpaste… now that I think of it, the tiredness was pretty real. The bone-crushing, soul-sapping fatigue that comes from growing one human inside another human was tough…

… But other then that, I absolutely loved being pregnant. I loved feeling myself transform from not-a-mother to mother day by day.

I loved feeling the first flutter of movement then feel the movements grow stronger and more insistent as he, too, grew stronger.

I loved that I could talk to my baby, play him the piano and sing to him knowing he could feel me and hear me. I loved that he preferred to lie on one side and his heel would stick out just below my ribs and I could rub it every day. After he was born I would rub the same heel, remembering he was once inside of me and now he was outside and the ridiculous craziness of how that actually came about.

I loved that my body told me instinctively what to do and how I learned not to question what it was telling me. I loved that after all the stress and the uncertainty about what Down syndrome would mean for my unborn child, I labored and birthed him exactly how my body told me to, exactly as I hoped it would be. I held in my arms a perfectly made, contently happy and healthy baby who needed no intervention, no medicalization, nothing extra from me or the doctors. I loved feeling the surge of happy hormones flood my body when I looked into his eyes for the first time. Yes, he had Down syndrome but he was healthy and perfect and loved.

As my son, Wade, is my only child, his is the only pregnancy I have known. I love talking about it and joining in when others share their pregnancy or birth stories.

I love it when you’re standing in a group at a party and someone announces they are pregnant for the first time. When the room erupts in kisses and hugs of celebration, I remember the giddy feeling I had when I found out I was pregnant. Stories start flowing from other parents about their own pregnancies and what to avoid and what to be on the look out for…

… And then there’s me.

Me…

Knowing full well my pregnancy and birth was amazing…

Knowing full well nothing I did prior to or after conceiving Wade caused him to have Down syndrome…

Knowing I wouldn’t change a thing about Wade…

… And knowing full well not everyone knows that.

Knowing I am the one in the room silently reminding the new mother that sometimes not everything they plan for goes to plan. When everyone starts reassuring a worried new mom about the upcoming scans and tests by saying everything will be fine, I can feel the unspoken exception of me and my scans and tests.

I know Wade is healthy and smart and funny. I know nothing I ate or didn’t eat caused him to have Down syndrome, but I also know how weird it must look to a new mother when I start giving out pregnancy advice.

I am genuinely proud of Wade. I absolutely love showing him off because he is hands-down the coolest person I have ever met. Unfortunately I still find myself hesitating to share my joys sometimes because I know that people don’t see things the same way I do. Occasionally I will see a little boy with a familiar style of blonde hair or the same quiet calmness as Wade and I will feel the urge to tell his parents how alike our kids are. But I know the look I might get when I do that… As though I am saying, “Your child looks/acts/behaves like he has Down syndrome.”

As though that is something bad or an insult.

As though that is all there is to my son.

This is the pervasive nature of disability, unfortunately. That parent might not automatically see I am talking about my son’s qualities and features instead of his diagnosis. I believe it wouldn’t be automatic for them to presume I am just as proud of my child as they are of theirs.

It’s a shame that the automatic reaction to disability is a negative one. Yes, my pregnancy didn’t go to “plan,” and yes, receiving those test results were some of the hardest days I have endured, but they were hard because I used to live in a world without Down syndrome, too. I knew nothing about it except what I was told to believe. I didn’t know how much has changed about Down syndrome. I didn’t know how capable he would be or how interesting it would be being his mom. I had no idea how much I would learn and change as a person.

It’s a weird feeling when pregnant women tell me how happy they are that their scans have come back with no issues. Don’t get me wrong, I am happy for them! Every new parent wants to hear that their baby is healthy, but it is impossible for me to hear anything other than how happy they are that their baby is not “like mine.” It would be unrealistic of me to presume that parents-to-be would sit waiting for their test results with fingers crossed, hoping the baby has Down syndrome. I understand that when your little train of expectation jumps the tracks and ends up on a line you had no intention of traveling, it can come with a jolt and a shock. But when I look at my little guy now, then think about myself doubled over with grief and shock on the floor when I was told of the diagnosis, I can’t match the two up anymore.

I know it’s hard for people to understand I’m not devastated about Wade having Down syndrome. I’m not feverishly making lemonade through gritted teeth because I was handed a giant basket of lemons. I am genuinely happy and wish I didn’t have to doubt myself when I talk about it with others.

For me, Down syndrome just is. Four years down the track, I’ve realized it is a thing that makes him different and a thing that has changed me and my world. But really, it’s just a thing.

It’s a thing I will share about my pregnancy because it’s a huge part of my story. It’s a thing I will talk about when I remember him as a baby or I think about him entering school, or plan for his future. It’s a thing that will cause me to lie awake at night with worry sometimes and cause me to grin uncontrollably with pride and happiness on others — in the same way all parents worry or gush over their children at different times.

It’s a thing that tells me everything and nothing about Wade at the same time.

Follow this journey on Embracing Wade.