Down syndrome child laughing at the beach

“Your child has a 99.9% chance of being born with Down syndrome. You have two choices, and you legally have a week to decide.”

This was the sentence delivered to us over the phone by a neonatal specialist. A week earlier I’d had an amniocentesis performed to collect amniotic fluid to check the abnormalities in my unborn child. My gynae and the specialist were concerned about an under-developed nasal bone, a soft marker for Down syndrome, a genetic disorder caused by the presence of all or part of a third copy of chromosome 21. It’s also known as Trisomy 21.

Our lives, in the utterance of two seemingly simple sentences, were changed forever. I will never forget my husband’s face as he processed what the specialist was telling him. I will never forget his quiet, “It’s positive” as he put the phone down, and I will never forget how my knees buckled in response.

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They say that there are moments in our lives that define us. We naïvely thought that was our moment. We were a young, fit, newly-married couple and this was our first pregnancy. I had felt our unborn child kick, hiccup and grow inside of me for three whole months. We had seen his face, his little hands and his feet so clearly on every scan. We had heard his heartbeat. He was whole, he was not broken or damaged or a life to be discarded. He was ours. It was with this in mind that we knew exactly what our decision was without saying a word to each other. Luke was ours and we had no right to decide that he wasn’t.

The rest of my pregnancy was a blur. We cried. A lot. We laughed. A lot. And we tried in our own ways to come to terms with our new future.

Jessica Roberts with Down syndrome child and sibling
Jessica Roberts with her children, Luke and Holly. Image: @honie.studios

I was so uneducated about Down syndrome. I had never personally been exposed to anyone with Down syndrome. Google became my best friend. I spent hours reading and researching, trying to prepare myself as best I could for when my child arrived. I will never forget Googling “can one breastfeed a baby with Down syndrome?” I was that completely and utterly naïve.

Luke, our son, made his entrance into the world on 5 May 2016 and from the moment I held him in my arms, I knew that it was not his diagnosis that defined us. It was him, all of him and the fact that he was ours. That moment changed us in more ways than I could ever describe. I have never felt more alive and more purposeful.

The true reality, and one which I couldn’t quite find in my late night Google searches, was that Luke was exactly like any other newborn baby. He burped, he fed, he smiled, he cried and he pooped.

We fell instantly and deeply in love with our little boy and the primal need to do anything and everything in our power to protect our child was overwhelming. He was perfect in every way and, if I am honest with you, this took me by surprise. I don’t quite know what I was expecting, but the level of instantaneous love and pride was almost too heavy to hold.

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Luke turns five in May 2021. He is a beautiful blonde-haired, blue-eyed, water-loving four-year-old. He attends a mainstream school; his favourite book is The Gruffalo and his favourite food is cake. He is adored beyond measure by his little sister, Holly, by our families, our friends and by our community.

Child with Down syndrome smiling
Luke Roberts. Image: @honie.studios

There are moments in this journey that have been tough. The continuous fight to prove our children’s worth, the need to prove the naysayers wrong and the many hospital stays are what drained us.

Many people are incredulous when I tell them that we chose to keep Luke. Many people say that we are stronger people than they could ever be. These comments I find tough. We are not stronger, or special or better than any other parent. We simply took a leap of faith on our son; we chose to stand up for him and fight for him; we chose to unequivocally call him ours, just as you would – and have done – for any of your children.

Around 50% of infants with Down syndrome are born with some form of heart condition. Luke was born with no heart complications, and we are thankful for this every day. Luke, however, has a compromised immune system which is often linked to people with Down syndrome. As a result, he is prone to picking up any bugs that are going around and these almost immediately reach his chest. Our hospital stays have been primarily related to chest issues and are often easily resolved through physio and rest. I would fight those fights, however, on any day, in any lifetime, to secure a better future for my son and I will continue to do so until my last breath.

Luke has driven me to educate myself, to challenge myself and to connect with others whose paths we may not have crossed, had it not been for Luke. Our blog www.learningfromluke.org initially started as a way of putting pen to paper to deal with the myriad of emotions that I was dealing with after receiving Luke’s diagnosis. This organically moved onto social media platforms and @learningfromluke now has over 7 000 followers.

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It is through these channels that I have connected with families of people with Down syndrome, many of which live all over the world, and we are driving awareness and support, and showing the world how wonderful the world is with people with Down syndrome in it.

2020 was an exciting year for us, as we are in the final stages of registering a non-profit company, @downsideupsa. Driven by a group of passionate parents, Downsideup is dedicated to creating a greater understanding and acceptance by assisting parents, educators and medical professionals to recognise the true potential and worth of all people with Down syndrome.

Down syndrome child happy at the beach
Luke Roberts. Image: @honie.studios

When we received his diagnosis, it was all about us. What we could do for Luke to make his life better; what we could do to ensure that he had everything he needed to reach his full potential and what we needed to change to ensure that we could get there.

Never in our wildest dreams would we have believed that it was, in fact, the other way around. He continues to shatter stereotypes and blow us away by his tenacity and sense of humour, his intuition and intelligence. Luke has done more for us than any life coach could ever have done. He has taught us patience; he has taught us determination and he has taught us resilience. He is loyal to a fault and if you are in his circle you are there for good.

Most importantly, Luke has taught us to love with our whole hearts and not just a little piece of it; he is the epitome of what love should be, pure, non-judgemental and all-encompassing. We never stop learning from Luke.

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