This is the first blog I ever wrote. It was initially for friends and family on Facebook and was my contribution to Down’s Syndrome Awareness Week in March 2011. Of course, 3 years later and it would be written with even more love and learning. I read this back and I don’t even recognise the hurt or pain I felt in those early days. I am being completely honest when I say that I would not change a single thing about my son, or any of my children, or our typical family life together. It is such a shame that I did not know then what I know now.
So, this is my story. Everyone has different experiences and different stories to tell. This is mine.
It was a small, musty room where the news was delivered to us that Seb had Down’s Syndrome. Five days after his birth, the fumbling paediatrician, ironically called Dr Downie, left the room to allow us some time to ‘take it all in’. I distinctly remember how the room had no windows. He had us captive.
He returned suspiciously swiftly with a handful of leaflets and I remember so vividly the hot flush in my cheeks, the palpitations in my chest and the knots in the pit of my stomach as I caught a glimpse of the cover photos. My mind ran wild and I didn’t dare look for too long.
I don’t know if it’s a mother’s instinct, but after the barbaric labour I’d endured, the absence of a cry and the fact that Seb wasn’t given straight to me, I was waiting to be told that something was wrong. He didn’t look quite how I’d imagined, but then most newborns look a bit alien – don’t they? I kept staring at his fingers and counting them. They were so fat and blue and I couldn’t quite believe there were only five on each hand. The staff left us to it so I presumed we were out of the woods. I’m always a worrier.
24 hours later, after problems with feeding, a midwife told us she had concerns of a ‘chromosomal abnormality’ (whatever that was) and had asked for someone to come and see us urgently.
A very long and uncomfortable two hours later the paediatrician arrived and, with very little eye contact, did some routine examinations. He mainly talked in riddles, but he said something about possible heart problems and muscle tone. It didn’t sound too serious. It certainly sounded redeemable. The nurse took some blood from Seb’s teeny tiny hand with what looked by comparison, like an enormous needle and organised heart and blood pressure tests.
That evening, all alone, I decided to read through Seb’s precious little red book. ‘Sandal gap’, ‘slanting eyes’, ‘mild hypotonia’, ‘concerns of chromosomal abnormality’. Still feeling brave and looking for peace of mind, I decided to google it……..
OH. MY. GOD.
So, back to the musty room with no windows, the confirmed results of the blood test, Dr Downie and the (imagined) pudding bowl haircuts. That was the day that someone drew a thick, black, heavy, vertical line right through the middle of my life. The day my heart was so heavy I could practically feel its weight in my shoe.
We gathered our things together, including our tiny baby with his shiny new label, and nervously knocked over our cups of water. We burst out laughing. Nothing about it was funny though.
We walked to the car. A stranger peered into the car seat and congratulated us. I forced a feeble, fake smile whilst feeling absolutely gripped with fear and dizziness. She had no idea. It should have been the happiest day of my life. It was the worst. We drove home and I remember thinking that the streets somehow looked different. Everything seemed calm and people were carrying on as normal.
The house was full to bursting with messages of congratulations, presents, flowers, balloons, cards, gorgeous baby clothes and the nursery that had been put together with excitement just weeks before. Everything was perfect, just how I had wanted it, except for one thing…
In a blur and on a mission, we frantically threw ourselves into research mode reading books and websites, and getting in touch with speech therapists, physiotherapists and other experts. I would wake up and for a split second it wasn’t real. There were tears, so many tears. Hysterical tears. Every single time I looked at my new baby I saw Down’s Syndrome. I felt a huge depth of love for him. He seemed exceptionally vulnerable and I felt guilty for feeling so cheated. It was a very confusing time.
Bit by bit, day by day, the hurt started to lift as I grieved for the baby I thought I was having and I fell in love with our Seb. He was a baby first and foremost, not just a syndrome. He cried, he smiled, he rolled over, he sat, he crawled. He learnt to walk, he learnt to eat. In fact he did everything you would expect a baby to do, just at his own pace.
Last month was his 3rd birthday and the only aching in my heart was pride which was literally bursting out. Every single day he makes me laugh. Every single day he makes me mad. He is charming, witty and bright and he knows how to have a meltdown like the rest of them. He is starting to speak, he’s learnt 100s of makaton signs (think Mr Tumble), he’s off to mainstream nursery in September and he’s even starting to learn to read. His favourite word is ‘cake’ and he is obsessed with diggers. He hates having his hair washed, he loves ice cream and he calls his brother ‘babydom’. He doesn’t have a pudding bowl haircut and his little face is full of magic and mischief.
In truth, I wouldn’t change a single hair on his body, let alone a chromosome. He is honestly the best thing that has ever happened to me and he has taught me so much in 3 short years.
96-98% of positive screenings during pregnancy end in termination. I would never judge anyone for taking this decision and I understand the reasons. This is exactly why my plight is so heartfelt. Before Seb, I was ignorant too. I had never known anyone with Down’s Syndrome. I was guilty of being in the ‘they’re so loving’ brigade and I have a pretty good idea how this story may have ended, or never really have started, had I known about that extra chromosome when I was pregnant. I feel so ashamed of that. Seb has brought joy to so many people in such a small amount of time and he contributes far more to me than I ever could give to him. He deserves to be here. I just wish that in those initial hours, days and months of his life I had not been so gripped with fear of the unknown and had just realised, as I do now, that he is a child (person) with likes and dislikes, just like anyone else. He just happens to have one extra chromosome.
I have read & re-read your blogs so many times. I have a 12 week old little girl with DS. I thought I was coping with the news but have to be honest & say that I’m kind of going backwards at present. My daughter is absolutely beautiful, honestly stunning & I love her 100% but that doesn’t stop me being gripped with fear & feeling like I’m swallowing a sickness feeling or walking around with what feels like a lead weight in my stomach every day at present. I just can’t seem to lift myself. I’m in touch with ups & downs who are great and I recently went to a baby & toddler morning they organised. I have to say that back then (4 weeks ago) I was feeling much more positive. There’s been no reason for me to regress & I know everything will be okay, I just wish I could see into the future & be reassured.
Your words do bring comfort & little Seb is just gorgeous. Thank you so much for sharing your positive experience & for everything you’ve done & are continuing to do to change people’s perceptions & to make the world a more educated place to be.
I’m hoping I snap out of this fear & anxiety I’m suddenly living in so that I can enjoy my lovely, hilarious little baby before I regret this stage of her beautiful life.
HI Kelly, thank you for your kind words and for taking the time and trouble to write on here. I really, honestly feel your pain. I remember it all so clearly and it took me a lot longer than 12 weeks for the hurt to lift so don’t feel bad that you have fallen again. It is SUCH a big and unexpected thing to get your head around and nobody can tell you that it will get better, but i promise it will. Bit by bit the diagnosis will fade as your baby will start to shine through with their personality. I remember every second of every day was horrible in the beginning and gradually, albeit slowly, to got less and less. I still have the occasional wobble but it is very rare now. From memory i felt a little better at 4 months but it took a few years to fully feel better. Don’t be hard on yourself. I am not using this space to self promote (all proceeds go to mencap) but i have a book coming out in January and it hopefully would be some use to you. It is an anecdotal recount of my own experience – “when life doesnt deliver quite what you were expecting”. It is available for pre-order on amazon and the wordery and is called The Label by Caroline White. As i say, i do not gain financially from the sales and wrote it purely to help new parents, so i hope this doesnt seem a little crass! Keep in touch. All the best Caroline https://wordery.com/the-label-caroline-white-9781782404606?cTrk=MjIyNjc2OTR8NTdkZmNlMTllYjg4NjoxOjE6NTdkZmNlMTM3NGFkMjkuNTg4NDkxMjU6ZjFjOTM3ZWU%3D