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 my baby for the first time. At one of my regular check ups at the clinic I asked the nurse to check a weird lump I could feel in my abdomen and, when she told me it was the baby, it blew my mind. I loved that I could talk to my baby, play him the piano and sing to him knowing that he could feel me and hear me.

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 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 that he was once inside of me and now he was outside and the ridiculous craziness of how that actually came about.

Baby Wade

Baby Wade

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 I learned to ignore so much of the over-the-top, unnecessary overkill that pregnant women come across when mindlessly surfing the Internet.

I loved that after all the stress and the worry and the uncertainty about what Down syndrome would mean for my unborn child, I laboured 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 medicalisation, 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 and we fell hopelessly in love with each other in that moment.
Yes, he had Down syndrome but he was healthy and perfect and loved.

As 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 the kinship of motherhood that crosses the divide between women.

I love it when you are 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, deer-in-the-headlights feeling I had when I found out I was pregnant. As soon as the announcement is made the room will split like the Red Sea as the other dads in the room will burst forth to shake the new dad-to-be’s hand. They will shake their heads with jokes about how life is about to change in ways they never dreamed possible. Then the mothers in the room will surround the new mum-to-be and start asking all the requisite questions about the pregnancy so far. Stories start flowing 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 that my pregnancy and birth was amazing…
knowing full well that nothing I did prior to or after conceiving Wade caused him to have Down syndrome..
Knowing that I wouldn’t change a thing about Wade…
…and knowing full well that not everyone knows that.

Knowing that 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 mum about the upcoming scans and tests saying that everything will be fine, I can feel the unspoken exception of me and my scans and tests….

When a newly pregnant mother worries about eating eggs or having the odd sip of wine and I announce “I ate eggs right through my pregnancy and Wade is fine”…I can feel them hesitate with no idea how to respond to that. Ok, I might...kind of…do it on purpose because my sense of humour is a bit warped but sometimes I just like to check how much people understand about why Wade is the way he is.

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Down syndrome is a random thing that happens at conception. All the pregnancy advice in the world won’t change that. Yes, it is more likely to occur in older women but most babies with Down syndrome are born to women under the age of 35….because most babies are born to women under 35!

I know that eating eggs did not cause Wade to have Down syndrome. I know that Wade is healthy and smart and funny 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 am going to 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. It would not be automatic for that parent to see that I am talking about my son’s qualities and features, his blonde hair, blue eyes or cheeky sense of humour instead of his diagnosis. It wouldn’t be automatic for them to presume that I am just as proud of my child as they are of theirs. That when they look at their kid’s perfect button nose or smile goofily as their child jumps up and down in a puddle or turns on the charm offensive in a cafe, I am thinking the same thing about Wade.

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 mum. I had no idea how much I would learn and change as a person.

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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”. I have spent a long time thinking about what that means. 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 travelling, 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 he would have Down syndrome, I can’t match the two up anymore.

I know it’s hard for people to understand that 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. 4 years down the track I have realised 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. Sometimes a harder thing…sometimes not.

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 lay awake at night with worry sometimes and cause me to grin uncontrollably with pride and happiness on others….just as 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.

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18 thoughts on “Sharing pregnancy stories when your child has Down syndrome…

  1. Oh my gosh. A friend just sent me this link and it is like you have put into words EVERY SINGLE THOUGHT I have had about having a child with Down syndrome over the last little while. I was literally nodding along to every paragraph. I have friends who are pregnant at the moment celebrating their ‘perfect scan results’ (which I have to clench my jaw not to say anything, as I also had those ‘perfect’ results). Don’t get me wrong – like you, I am happy for them – but all it screams to me is ‘I’m not having a baby like Cally’s!’. I am always asked how I’m coping. How has it been to parent a child with Down syndrome for 10 months. I can’t help but think they don’t believe me when I say it is no different to their experience, only with a few extra appointments. And I struggle with the fact that people don’t think of my daughter as healthy, even though apart from a bit of glue ear, she’s as healthy as can be.

    Thank you for this, I will be sharing on my page and urging my friends to read it so they can (hopefully) start to understand that my journey is a lot like theirs, and so is my daughter.

    • Thanks Cally! It’s so hard because people see Down syndrome as an all encompassing thing but every one is different!
      I’m so glad this will useful to you!!

  2. I have always felt exactly the same about my son with Down syndrome, from the moment he was born. 🙂 He’s 18 years old now, and nothing has changed.

  3. You might be surprised how much people with neuro-typical kids “get” that when you compare your kid to theirs you’re not talking about disability – even if they do think that for a split second, it’s good for them to be challenged (I think so anyway!)

    • I know it’s not everyone all the time but I think it is one of the first things that comes to mind in a lot of cases. Challenging people’s immediate perceptions is a great thing to do!
      Thanks for your comment!

  4. “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”. ”

    So good! I have two kids with Ds, via adoption so I can’t relate the the pregnancy piece, but the rest is pure gold mama. I have felt the need to tell pregnant friends of mine that if they feel sad about a Ds diagnosis it’s okay, because it is. But in a way it is also saying to me that they are sad their child is like my child and that is just sucky. People can’t know what they don’t know and for every sad and devastated mother I meet who gets a new diagnosis I just hold my tongue and smile and hug and listen and nod knowing there is another side to it all and it won’t be long until they are on that other side.

    • It’s really weird. It’s definitely a process you have to go through when you are pregnant, it’s like you have to get to the other side to know. I wouldn’t have the same reaction if faced with the diagnosis again.
      The adoption process must be amazing. I’ve thought that I might adopt down the track if Wade ends ups with no siblings…

  5. Beautifully written and so true! Once again, you’ve cleverly put thoughts into words… Thank you for sharing such a powerful message!!

  6. Thank you for this. I just recently found out that my unborn baby boy has down syndrome. My first reaction was to cry but now I see this is a blessing. I wasn’t planning on having any children and at 37, this pregnancy was a surprise. I’m scared but I know this little guy will be the best thing to happen to me.

    • Congratulations! A double surprise for you! I’m sure you will enjoy being a parent in all its crazy forms. There are a lot of joys and a lot of support out there. Stay in touch and send me photos when he is here!!

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