This week is Mencap's Learning Disability Week (19 - 25 August). The charity is calling for people with a learning disability and their families to share their stories and is asking the question; who is your real-life superhero?
My (our) real life superhero
If you asked either of my boys to name their Superhero, the answer is guaranteed to be either Buzz Lightyear or Spiderman - although deep down I suspect their real Superhero is the same as mine. Their Dad.
My eldest child, Seb, has Down's syndrome. My pregnancy was uncomplicated and we were very excited about the prospect of becoming parents for the first time. It was a really special time.
24 hours after a birth fraught with complications, we were told that the medical professionals thought Seb had Down's syndrome. What should have been the happiest day of my life was the worst.
For Simon, my husband, it was very different. He accepted the diagnosis from day one and through all my tears and heartbreak he constantly reassured me that we would cope, that we would do the best for our little boy and we would still be the little family we had always imagined ourselves being.
On a mission and desperate to take some kind of control, I threw myself into researching the condition - pages and pages of potential health and developmental problems, lists of possible characteristics and a whole new (seemingly bleak) world I did not want to be in. It was a very daunting time and every time I looked at Seb, I saw Down's syndrome. I cried. A lot. There were days I wished the three of us could just run away.
A couple of months later, I met an old school friend for coffee in Bath, where we live, who was visiting for the weekend. On the way home I saw an adult with Down's syndrome shuffling along the road on the arm of his elderly mother. In stark contrast, I then saw another family with two beautiful young boys in the post office with their Dad. I walked home in hysterical tears and imagined the worst for our future.
Simon, shocked at the state I was in, asked me what had happened. When I told him, he finally got tough with me. Up to this point he had allowed me to wallow in my grief but he firmly told me "if you can't accept him, how do you expect society to? You are his mum. You need to be his biggest backer" and then came the turning point... "what about the day he bounces up to you and says "hello mum!"" It was a real lightbulb moment, Simon made me see Seb as an individual, not just a text book of characteristics.
Bit by bit, the hurt began to lift as Seb started doing all the things that babies do. He smiled, he babbled, he rolled over, walked, signed and started to talk. His personality began to shine through and I stopped seeing Down's syndrome. Just Seb.
We lead a really typical family life. Seb loves his scooter, riding his bike, going to the park, Toy Story, the Muppets, sausages, chips and ice cream. He is great at football and loves running and rugby. He goes to mainstream school where he has made lots of friends and has started to read. He is more like Simon and I than other children with Down's syndrome. Simon is fantastically patient with him but also great at disciplining him (something I struggle with!).
Simon has never batted an eyelid about Seb's condition and to me he is the greatest Superhero in our lives who, in those early, tough days, made 'different' normal. Seb is an equal and valued member of our little family and Simon has always made sure he is treated that way. I wouldn't swap our family for the world.
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