By SWAN UK Member and Blogger - thelongchain.wordpress.com
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 then-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.
Benjamin is now 13 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. My husband and I are closer than ever. We have moved out to a big old house on the coast. 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.
My mother worries that I am “putting my life on hold” to look after Benjamin. I can understand where she’s coming from: she gave up her career – which she loved – to look after myself and my brother, and to give me the start in life that got me where I am today. She doesn’t want to see me throw all that away to sit at home, my intellect and my prospects slowly withering away, caring for a child with whom I may never even hold a conversation. At six months, I had similar fears. Ludicrous fears. We’d had no crises: no seizures, no choking, no rushes to hospital in the middle of the night. He’s not even slowly declining. It’s just … he’s not really slowly doing anything.
When people ask me what kind of care he needs I often find myself saying “oh, it’s just like having a new-born baby.” While all his peers are rolling over and pulling themselves up and burbling and feeding themselves, and even at the special needs groups all the beautiful little Down’s syndrome girls his age are sitting up and laughing and grunting and cooing and reaching out their arms for a cuddle, he remains just a slightly bigger, slightly blonder version of the day he was born. No-one can tell us how long he could stay that way.
We know his development is delayed but – until he hits a few developmental milestones, we can’t know how delayed.
He can’t walk until he can sit, can’t sit until he can hold his head up. He can’t talk until he can babble. He can’t even babble. He might remain a new-born baby for two years, ten years, fifty years… A real-life Peter Pan. And the thing about new-borns is they’re designed to consume all their mother’s thoughts, actions and energy. One look into those deep, dark eyes; one brush against his soft, soft hair; one tiny, heart-tugging whimper, and I am evolutionarily hard-wired to drop everything else. I can’t put him down when I’m holding him; can’t tear my eyes away when he’s sleeping; hate to let anyone else feed him, wash him, hold him, let alone care for him for a day. So mum’s right, it does sometimes feel as if everything is on hold, in suspended animation. As if he – and me with him, wrapped up in him – has stepped into some kind of bubble, a Narnia-like state where nothing ever changes.
But … I remember when he smiled for the first time. Not just a grin, but a proper smile, as if to say “That’s my mum, I know her, I trust her and I love her.”
I literally jumped for joy, all around the kitchen. He was seven months – most children smile by seven weeks. And his smile wasn’t just slow to come, it was slow to unfold: once I’d entered his (limited) field of vision a couple of seconds passed as he registered me, then a couple more as the messages passed from brain to mouth and the muscle fibres interpreted the unfamiliar command. It was all the more special for the sheer mental and physical work that went into it. And it wasn’t a fluke, I tested him: hid behind his chair, came out, gave him time … and there it was again in all its beaming, toothless, slightly lopsided glory. A feeling of relationship. A twinkle of light at the end of the tunnel marked, on my darker days, “thankless life of servitude to child who will never even know who you are, much less love you, much less be able to tell you that they love you.”
At almost a year, we reached another milestone. As other special needs parents will appreciate, what is a milestone for us is something that many neurotypical children do so automatically it’s barely worth noticing. Benjamin started playing. At least, that’s what I’m going to call it. He made repeated (if small, slow) movements with his hands to (successfully!) move an item (one of those crinkly, silver space blankets) in a way that interested him. Now that’s progress! And not just progress for him but for all of us. It’s not easy to play with someone who doesn’t respond, who isn’t able to tell you what he likes and what he doesn’t, what he wants to rattle and what he wants to look at. It’s so easy to get disheartened, to plonk him in a corner with something shiny, not thinking he’ll even look at it let alone engage with it, and carry on making the dinner. So I’m really hoping we’ve hit a kind of positive feedback loop here: I give him a toy, he plays with it, I play with him more. Result! We’re a long way from a game of chess but, at our own pace, we’re getting there.
Benjamin continues to surprise, delight us and enrich us every day.
He is not defined by an MRI scan, a list of symptoms, or a dot on the geneticists’ graph. He is the most loving, accepting, contented soul. He makes us complete.
Yes, there are tough days. No one caring for any two children could truthfully say otherwise. Yes, we worry about the future – Benjamin’s 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. You could say we got lucky: our son is a happy – even joyful – little boy and, aside from his disabilities, is healthy. But he is proof that – even when the prognosis is grim – luck, and hope, do exist.
This post is made up of a medley of posts previously published at: https://thelongchain.wordpress.com/