Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome

This week, as I was scrolling through my newsfeed on Facebook I noticed a screen shot posted by a friend of mine in America. His name is John and he is dad to the very adorable Owen, who has the coolest flop of wavy hair and also happens to have Down syndrome. After I read this screen shot, I was taken over by a moment of lovely clarity and enormous pride. My mind was cast back to when I first met John online and the enormous impact he had on me when he got in touch.

John and Owen - photo provided by John

John and Owen – photo provided by John

I started this blog back in March 2013. Wade was 14 months old and I was just starting to find my way in this new world.
Having an unconfirmed prenatal diagnosis for Down syndrome meant 9 months of complete unknown. Life consisted of percentage chances of this or that and a long list of maybes that may or may not be relevant.
I remember being consumed by wanting to know what my future would look like. On the whole I was comfortable with the idea of raising a child with Down syndrome but it was a process to go through all the ifs, buts and maybes about what that would entail. Some days were easier than others and some days were harder but when I looked at the roller coaster of emotions I had been on during my pregnancy, I realised that I had come out the other side relatively unscathed and with a positive outlook for my future.
I was probably a bit naive to some of the challenges ahead of me but once I met Wade, I knew I had been through an experience that you could only understand once you had done it yourself.

Once I came out the other side, I wanted to pass that information along so that other people might find a story they could connect to as well. While I expected that family and friends would be curious and want to know a bit more about my story, I was really hoping to reach other parents who had received a prenatal diagnosis like me and were looking for a story they could relate to.

3 months after I started the blog I received a comment from John. His wife, Danielle was 6 months pregnant and they had recently found out the baby had Down syndrome. I instantly recognised the feeling of being all at sea that comes at this time and I was so excited to have reached him. He was reading my story and it was helping! What struck me was how open and honest he was being about his feelings. I saw a lot of similarities between John and myself. As he spoke about the importance he put on intelligence and a critical mind, I could see him waver about how he would cope raising a child whose intelligence may not be as high as his own. I recognised the different doubts that pop up at different times and the need to reach out and find a story that gives some clarity. I recognised the lurching from happiness and excitement of being a first time parent one day to freaking out over the whole diagnosis the next.
I wanted to reach through the screen and give him a hug and tell him that everything was going to be ok. When he shared with me the worry that maybe his baby wouldn’t be cute, I said to myself….just wait John…you’ll see.

I told him, “your baby will be the most beautiful thing you have ever seen”.

john blog 3

I just knew that when he laid his eyes on his beautiful boy and realised he was a dad, all of the doubts and the worries and the anger would fly out the window and there was nothing I could do but wait along with him. I knew that it didn’t matter how many times he was reassured, he had to feel it for himself.

John was the first person waiting to meet his child with Down syndrome to get in contact with me. I’m sure I wasn’t the only source of support for John and Danielle at this time but knowing that I might be helping was was a wonderful privilege. It made me cast my mind back to when I reached out to another parent for the first time. I remember how going into the offices of Down Syndrome Victoria for the first time made it real all over again and how anxious that made me feel. Then I also remembered the instant feeling of “family” I felt after speaking to Sue, another parent and how reassured and calmed I felt after the whole experience. I remember feeling the confirmation of a lot of positives I had already felt and the slipping away of some of the more extreme worries that had plagued me. I would still meet my challenges and I would still have days spent racked with worry but knowing I wasn’t alone in the world really helped. Once Wade was here and I joined a coffee group for other parents, that feeling of “family” brought me to tears the day I walked in to my first meeting and understood that I would be friends with these people forever before I even knew their names.

I wanted to pass that feeling onto John and other parents too.

A few months later I was thrilled to receive an email announcing the arrival of Owen along with the photos I had demanded asked for. I was so pleased for them both. Down the track we became Facebook friends and when I saw in photos, the giddy look in John’s eyes that comes with being a parent completely and utterly in love with their child, I smiled…there it is!

So this week, John posted this screenshot I was talking about…

The final line (cut off) says "This child can and most certainly will surprise you"

The final line (cut off) says “This child can and most certainly will surprise you”

As soon as I saw it I realised he had come full circle and was now picking up the baton and reaching out to new parents to share his knowledge too. I realised that when you have a prenatal diagnosis, on the one hand it can be a blessing as a lot of the worries and research can be done with before you meet your baby but it can also be really hard as there are so many months spent not knowing what your baby will be like. So many months hearing about the worst case scenarios or the outdated stereotypes…. Then after the baby is born you want to reach back to your old pregnant self and tell them not to worry. You want to show them the big blue eyes that will one day look at you with that look…the one reserved only for you. You want to tell them that one day your heart will nearly explode with joy when you go to pick him up from childcare and he spots you from across the play ground and runs up to throw his arms round you. How he pats you on the back with both hands as he hugs you for a full two minutes then grabs your cheeks and kisses you. You will be unable to stop for face cracking wide with a smile as he turns and waves to everyone yelling “byyyyyyye” to all of his friends then tries to tell you all about his day as you grab the few words that gives you an idea of what (maybe?) happened. (Apparently he brushed his teeth at childcare today?!)

Thinking about the baton being passed from Sue to me, from me to John and from John out to another brand new parent in our club just reminded me of how important it is to share that lived experience. Not only does our own experience help someone in need but sharing our own stories encourages them to reach out again when it is their turn. The Down syndrome community is one of the most positive and supportive families out there…(make no mistake we can have different opinions and act like narky families on the wrong side of Christmas lunch sometimes too!) But the overwhelming feeling people feel when they first enter our club is one of welcome and joy. We can’t wait to share the secret that our kids bring much more joy than heartache. That the feeling you feel when you are first given the diagnosis will not last forever and people with Down syndrome are as beautiful, unique and different from each other as the rest of us.
That warm embrace you feel when you first enter our club is contagious and we can’t wait to pass it on to the next new parent who comes our way!

Since Owen was born, Danielle also took up the baton and started her own blog Lets Go Have Some Pancakes, to share their experiences with the world. She is a gifted writer and you should definitely check it out.
Click here to read her first ever post to explain the title of the blog….it’s brilliant.

When I got in contact with John to ask him if I could write this piece we got talking about academics who believe Down syndrome shouldn’t exist and how the lived experience is so different from the idea of Down syndrome and he said this beautiful thing that pretty much sums it all up…

“…. I just don’t see how anyone could spend five minutes with our boys and come away thinking about suffering. It’s not possible.”

Other posts that relate to this one!
Why I heart Down Syndrome Victoria
Part 4 The New Normal
It’s not the 60s anymore: its time to update the advice given to parents about Down syndrome

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4 thoughts on “Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome

  1. It’s funny how themes pop up in life at the same time, like a sitcom episode. The night you wrote this I ran into a couple at the pool. I saw a familiar look when we met eyes and knew before they even said it, that they had a child with DS. I realized how much of a “family” connection it really is. We have a shared experience that creates a connection that cannot be replicated. I was with my mother in law at the time and I think she was a bit confused wondering if we had met them before. The dad was giving me his card and begging me to call them if we ever needed anything and mom was scrolling through her phone to find prom pictures of her daughter, all while telling me “just you wait, it’s going to be so great.” All before they even knew my name. As a parent it has been an incredible to find these connections – at the mall, the pool, halfway around the world – this community is expansive and amazing! I’m really excited for Owen though. He will have many different friends from many different places over the course of his life. We live in a city where the education system is complex so it’s likely he may not end up with the same group of students he starts out with, but the people we have met in online circles and friends we have locally at Down Syndrome of Louisville will be friends for life. It’s hard to believe that when John first reached out, Wade was younger than Owen is now! These babies need to slow down with their growing up! I also had no idea we were the first expectant family to reach out to you. I figured you had done it a dozen times :).

    • I love how our community does that! It’s so great to know our kids won’t be alone in the world….that wouldn’t happen with their personalities anyway!
      Time is skipping by so fast and it blows me away. Can’t believe my boy starts kindergarten next year…aaaah!

  2. so true my 12 yr old madison with DS has brought so much joy and love to all who know him and its wonderful to share with all other families blessed with a child with an extra chromosome

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