I remember those early days of taking a newborn Nicholas out and about. In my memory, they were more likely to be days when the big boys were at kindy or daycare and it was just the two of us, relishing in each other… and the peace, without those unruly brothers around 😉
Sometimes strangers would peek in the pram and see his blonde fuzz, his fair skin, and they would gush over how cute he was. And he was indeed gorgeous.
But there was always a little voice in the back of my head, wondering whether they knew he had Down syndrome. Wondering whether they thought he was cute enough, good enough. Sometimes I would just nod along and agree that he was adorable, but other times I would feel the need to tell them about the diagnosis. It was most often awkwardly blurted out by me, not really knowing how to articulate the right words and still trying to process my own emotions over having a child with Down syndrome.
As the months progressed and Nicholas grew and developed, his almond eyes and other visible features of Down syndrome became more obvious. I would be conscious of how people looked at him, as he sat on my hip or in the pram, and I would analyse their facial expressions. It’s not that anyone was unfriendly (and maybe I totally jumped to conclusions about what they were thinking – maybe they were actually contemplating what they would make for dinner that night, and not analysing how many chromosomes my child had.) But I felt those sets of eyes on my beautiful child.
Sometimes I wish people could know what I was thinking. Maybe I should have put a sign around my neck:
“Yes, our baby has Down syndrome, and he is the best thing that ever happened to us. We don’t need you to feel sorry for us. He is so so loved and wanted by us.”
Over time, I worried less about what other people saw and thought about us. I came to realise I couldn’t control what they thought, I could only control my own actions. I would always try to hear the love in their often poorly worded comments or questions, which I’m sure were mostly well intended.
As Nicholas’ big personality grew, he came into his own. I didn’t feel the need to explain him to anyone anymore. My fears were replaced with pure pride and love over this child and, while I could be somewhat biased, it was pretty hard for anyone who met Nicholas not to fall in love with our cheeky monkey. And, if they didn’t take the time to know and love him, I knew that it was their loss.
If I’m completely honest, maybe sometimes I over-gushed over him in public just to demonstrate to the world just how loved he was. I hoped that the love radiated out of us and onlookers could just tell, at a glance, just how much he rocked our world.
I now have proof that they could tell.
After Nicholas died, I received a beautiful email from a gorgeous Mum in our school community which brought with it both tears and joy. With her permission, I’ll share an excerpt with you:
“…You see, I knew you (or of you) and Nicholas waaaaaaay before you came to know me. The first time I ever saw you was at a park. I was there with my mother-in-law and I remember noticing you and Nicholas. Nothing out of the ordinary….just a mum and her son in the park, but I remember that day like yesterday even though it was nearly three years ago now. We weren’t even part of the same school community yet. We were in a different school and a different suburb to where we are now. The reason why I remember it so vividly was because of the amazing love I could not only see but also feel between you and Nicholas. I remember you picking him up into your arms and the way you looked at him, made me think…..that is unconditional love right there. I will never forget that look between you two. I remember thinking that I hope that it is the way my children and I look at each other.”
I can’t put a t-shirt on Nicholas anymore to remind the world just how loved he is, but he always will be. I hope you can tell that by every photo and video I share, every story I recount about him.
In his absence, Nicholas’ best friend Rosie has taken up the baton and is wearing our ‘So Loved’ kids t-shirts. His friends Parker and Eden have one too, and his cousins, Polly, Dulcie, Aly and Hannah. I hope they always know how loved they are too.
So so loved.
