I think it’s only fair that before I go any further I explain properly why I’m writing this blog. So, I need to take you back to last November.
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 an MRI scan and 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, 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 a termination of the pregnancy, if we wanted one 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 developed into a week, as we considered the implications for our baby (his likely suffering, his lack of sensibility, his “quality of life”), for ourselves and for our 21-month old daughter: missing out on the life we had planned for her, all the exciting things we wanted her to do and places we wanted to show her, being dragged along to endless hospital appointments, being denied attention because we would be so busy caring for her brother, ultimately perhaps being responsible for her disabled sibling when we are too old to look after him.
This isn’t about proving the doctors wrong. I know it was their responsibility to prepare us for the worst. I know everyone wanted us to think carefully about what we were letting ourselves in for if we decided to keep the baby. 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 – just a chance – he might enrich your lives in ways you never imagined.”
Our son is now nearly nine months old. We kept him simply because it was the right thing to do, because it would have been hard to live with ourselves had we done anything else. Yet he has changed our lives – and us – for the better in so many ways. He is an adorable little boy. 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, and are flying to Tuscany this weekend. My husband and I are closer than ever. I have learned that life is not so much about principles; it’s about caring. His 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. We have met some amazing people – mothers, fathers, grandparents, carers fighting for their children, fighting to make their world a better place, sharing everything they have – their money, their time, their knowledge, their experience, their energy, their love.
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 – probably will – get harder. But I firmly believe that he will continue to brighten our lives every day.
This blog grew out of my need to share that slim chance that for us turned into a reality. Perhaps to help inspire those fighting for the rights of disabled people, the unborn child, and the disabled unborn child. But mostly for those facing similar horrible decisions, to give the other side of the argument, to provide just one example of that other realm of possibilities outside the grim, medical, worst case scenario, so you can make a fully informed decision. You could say we got lucky: our son is a contented – even joyful – little boy and, aside from his disabilities, is healthy. But he is proof that – even when the official prognosis is grim – such luck, and hope, do exist.