In the days after LittleJ’s diagnosis of down syndrome, when I was 18 weeks pregnant, I fell into a place of deep grief and began searching for hope. I was stuck between not wanting to accept his diagnosis but needing comfort that our future was going to be ‘okay’, this required some level of acceptance first. I would lie in bed googling and reading the stories and lives of other families that had children with trisomy 21. It was through these stories, letters and videos that I began to learn. I learnt that on the one hand there was a beautiful global community of people who saw far beyond any diagnosis, with children and adults smashing past expectations placed on them by an ugly history that rejected and marginalised people with down syndrome. And on the other hand, there were still those who saw killing him in utero as the most acceptable (some would say responsible) response to our diagnosis. That was never going to happen.
Yet, as horrible as it sounds, I can look back now and see that in ignorance I belonged to a part of society that could accept disability (or differently abled!) from a distance, I just didn’t want anything to do with it. So in that time of diagnosis I had to confront the myths and fears I’d never questioned or challenged. And my world grew bigger and better.
So I want to address the pregnant woman scouring the internet for hope, perhaps your baby has been given a high chance of having down syndrome, perhaps you’ve learnt through amniocentesis and right now you’re confronting a wall of overwhelming fear and grief. I can’t tell you what your life is going to look like, no one knows what the future holds – no sonographer, doctor or genetic counsellor can tell you that either.
But what I know is that when my little boy was born he looked at me and I fell in love. He wasn’t ‘a syndrome’, short femurs, hypoplastic nasal bone, simian crease. He was just our LittleJ. Over the last few months of his life we have completely fallen in love. He breastfeeds, cries, smiles and gives us the best snuggles. His sisters love him unconditionally, they celebrate with genuine joy when he lifts his head and has a look around during ‘tummy time’. If I could speak to myself in the aftermath of his diagnosis I would say, ‘you’re going to be just fine! You’re going to love your life and family, he will be loved and celebrated by your community’. Thankfully I found those letters online here ‘Diagnosis day: what parents would say to themselves if they traveled back‘.
It will only get better from here.