It’s just a few scribbles but the words and the handwriting in my son’s little red book, given to us just minutes after he was born, are indelibly stamped in my memory. I stared at them so many times and for so long. I wanted desperately to scribble through them - rip the page out even. It was as if someone had written graffiti on his precious notes and ruined his start in life, and my start at motherhood.
Holding my breath so as not to explode into hysterical tears in the maternity ward, making my stomach churn all the more, I was offered my own room. I didn’t want my own room. I didn’t want to be different, to feel different, to be excluded, I wanted to stay there in the ward with everyone else, sharing our birth stories. I didn’t want to feel like this was bad news or people were feeling sorry for me. They were feelings I was already struggling with and the midwife who sat on my bed and cried confirmed it.
I lived in hope that the consultant had got it wrong, that there had been a mistake, but a week later, in a small and musty room, he told us:
“blood tests confirm that baby Sebastian has Down’s syndrome”
I can still remember the panic and fear rise through my whole body. What should have been the happiest milestone in my life, something I had yearned for for so long, was suddenly and unexpectedly the worst. It felt like my cheeks were caving in, my heart was racing and my temperature soaring. My mind was racing, picturing a pitiful existence, a lifetime of sorrow, disappointment and sadness – always feeling second rate and cheated. Yet at the same time I was filled with maternal longing for this beautiful new life, wrapped snugly, fast asleep in his polar bear suit, blissfully unaware of the soaring pain in the room.
We silently collected our things, the pile of leaflets and our baby with his shiny new label, and set off home. It was so far removed from the homecoming I had imagined and I couldn’t see how things would ever be the same again. My mum had decorated the house with balloons and I can remember thinking it was like a ridiculous scene from Eastenders. Except it was real – and it was my life. And I definitely didn’t feel like celebrating.
Every morning I would wake and for a split second everything would be ok, and then I would remember and the anxiety and “grief” would creep over me again. It seemed like every moment of every day was tinged with sadness and disbelief. Every time I looked at my baby all I could see was “Down’s syndrome”.
But with each new day the hurt began to lift. My baby started to do all the things that babies do. He smiled, he laughed, he cried. He learnt how to walk and to talk and to eat solid food - and his personality started to shine through. Each day his diagnosis became less and less important and it was impossible not to fall in love.
At 9 years old Seb is every bit the boy I ever dreamed I would have. He is sporty and bright with a wicked sense of humour. He reads and writes and goes to mainstream school, where his teacher believes he is one of the most popular members of his class, if not school. He is mad about football, Chelsea obsessed, and often scores the most goals at his after school sessions. He loves swimming, skateboarding and basketball. He has an incredible way of engaging with people. He is charming and full of magic and mischief, there is not a single day that he doesn’t make me laugh.
When I look at Seb now, all I see is Seb. I see my boy, my son. I don’t see a diagnosis or a syndrome or a list of characteristics in an NHS leaflet. I see an individual. I see a boy with a handsome face that makes my heart skip a beat, I see a boy who works tirelessly to achieve things that come much easier to others. I see a boy who appreciates the value in every small detail, stopping to stroke every dog, coo over every baby and engage with every person. I see a son, a brother, a friend. He is kind and polite and I am incredibly proud of who he is. We may have some extra challenges, mainly standing up to prejudice and misconceptions, sometimes we have to fight for funding that he is entitled to and it takes a little extra work to teach him things that come more naturally to others, but the rewards far outweigh the challenges.
I once couldn’t believe my luck. Why me? I feel the same today. I genuinely cannot believe that Seb is mine. How lucky I am. He is undoubtedly one of the best things that has ever happened to me. He has enriched my life beyond measure, taught me so much and there is not a single day that passes when my heart doesn’t completely burst with maternal pride. I feel so lucky that he is mine.
Caroline has recently had her short story The Label published by Ivy Press, with all proceeds going to Mencap. Caroline wrote her story to try and help any parent finding themselves on a “different” path - be it a diagnosis, pre natal depression or simply just finding motherhood different to the text books.