I’ll be honest: When we first found out (prenatally) that our boy had Down syndrome, it was devastating. I had to fight my inner demons saying things like “what will the world think about him and us?”, “What if I don’t love him?” and “Will I be happy?”. I think it’s safe to say that news that your child isn’t the one you hoped, dreamed and longed for is an exercise in letting go and redefining. However, that also leaves a lot of room for creating dreams that are actually attainable, meaningful and nobody else’s.
This year, on our first 213-day (21 March 2023; World Down Syndrome Day), we had the chance to meet up with other parents of kids with special needs (mainly DS). Analytic as I am, I sensed a common theme among all the parents, the like of which I have never felt meeting any other parents: Everybody there had experienced a profound sense of loss. I know what you’re thinking right now: Surely, it would be worse if your kid had actually died? While rationally, the answer would be “yes”, emotionally, there’s a side of every parent with a special needs child that has already experienced a type of death. However, there was also a profound sense of gratitude and resilience among everyone–again, the like of which I have never experienced before–and in that moment, I knew that I wasn’t the only one that had had to give up the dreams that I thought were mine, in exchange for one simple dream: Living in the here and now and not to worry about the future.
I’ll always be there and holding his hand and to do my best to make him smile through the inevitable pain that I will be powerless in stopping.
It’s a well-known fact that with Down syndrome, you can expect a number of health-related issues. As such, I could never promise my child that he’ll be healthy, that he won’t suffer in life, nor that he won’t have Alzheimers at the age of 40. However, what I can promise him is that for as long as I live, I’ll always be there and holding his hand and to do my best to make him smile through the inevitable pain that I will be powerless in stopping. Indeed, in the traditional sense of “happiness”, there are many things that I will be powerless in making happen, but I also know that my boy is destined for so much more than just traditions, social norms and having to prove your worth.
I think that in many regards, kids with special needs is a celebration of all that’s good in this world. Because, it’ll always about the little things, stopping and smelling the roses, and finding joy in the unlikely or humblest of places. I, as a parent, am grateful for always being reminded of what’s important in life, so that I can stop comparing myself and my son to others, and to set and re-set my sights on something higher: Love and happiness. At the end of the day, if you don’t have love and joy, then you really have nothing, and that lesson is something I would gladly give up all the worldly riches for.
Finntrovert 