Guest post by Alexandra from Dunbar. Alex’s second child, one-year-old Benjamin, has very complex needs which were discovered before he was born. She writes a blog, and shares her story with us as part of Scope’s 100 Days, 100 Stories project.
We were 38 weeks into an uneventful pregnancy, excited about the prospect of meeting our second child.
Then, at the end of a very long Friday, starting with a routine ultrasound at nine in the morning and ending with a hushed consultation eight hours later, we were informed that our baby’s brain had not developed beyond that of a 20-week foetus. It was way too small and simple. There were big holes in the middle and smooth surfaces where there should be intricate folds.
He may not breathe on his own, they said. He would probably need to be fed through a tube, would almost certainly suffer frequent and severe seizures, and would be very unlikely ever to walk or talk.
While we weren’t pushed towards terminating the pregnancy, if we wanted to, the papers could be signed there and then.
We went home to think it over. We returned to the consultant again and again, we spoke to friends, relatives, counsellors, we scoured the internet.
A weekend turned into a week as we considered the implications for our baby – his likely suffering, his quality of life – for ourselves, and for our 21-month old daughter, Jackie.
I know it was the doctors’ responsibility to prepare us for the worst. But no one, no one, said: “There’s a chance he might be happy. There’s a chance you might still be able to do the things you wanted, just with a little more planning. There’s a chance he might enrich your lives in ways you never imagined.”
Our adorable son, Benjamin, is now one year old, and he has changed our lives for the better in so many ways.
We haven’t yet missed out on anything we’d planned – we’ve been on trains, buses and family bike rides, bought a big old house on the coast, been abroad on holiday. My husband and I are closer than ever. I have learned that life is not so much about principles – it’s about caring.
We met some amazing people – mothers, fathers, grandparents, carers– fighting for their children, fighting to make their world a better place, sharing everything they have.
Benjy’s big sister loves him to bits, comforts him when he cries, plays with him whether he wants to or not! He’s the first thing she asks for when she wakes up in the morning.
Our son is a contented, even joyful, little boy and aside from his disabilities, he is healthy.
Yes, there are tough days. No one caring for any two children could truthfully say otherwise. Yes, we worry about the future – his and all of ours. Yes, it is early days yet – things may, and probably will, get harder.
But I firmly believe that Benjamin will continue to brighten our lives every day. He proves that there is another realm of possibility outside the grim, medical, worst case scenario.