I’ve been posting a lot about Down Syndrome lately. There are many reasons, but ultimately, it is because I have been thinking about Down Syndrome a lot lately, and what the implications of that term are for Ella and for our family. I watched this video recently. I cried. Well, I cried in a Krista type way – in which I get teary but do my best to hide the fact that I have been moved to tears by something so simple. I have watched it over and over. I love it. I look at their faces, I know them well. I think about how beautiful they all are. I think about how much hope is in their words and how capable they are. And I think about how five years ago, I had no idea.
The idea of Down Syndrome was not familiar. I didn’t know anyone with Down Syndrome except a guy in my grad class, whom I didn’t interact with a whole lot. I knew of Corky and while I entertained the idea that one of my children might be born with a disability, there was always a part of me that didn’t actually believe it would happen.
I know Down Syndrome now but in an entirely different way than I did then. Each day, I know it more intimately than the day before and I become more comfortable with it, the idea of it, the look of it…to the point that I almost feel like it is a regular friend that needs no explanation.
Each time we transition, which has been a lot in the last three years, there is an awkwardness as I introduce myself to new parents, new friends, new teachers and caregivers. Do they notice? But this time, when we moved from Ladner to Vancouver I forgot to notice. I forgot to be self-conscious about the fact that Ella has Down Syndrome and I find myself struggling to know whether I should mention it or not. Even when she starts a new program, do I bother mentioning it? Her life in Vancouver is so free of aids, therapy and Down Syndrome, much like it was when we first arrived in Cambridge.
I don’t know what all this means, or how things will change…and I know that they will but I wanted to put it out there. Maybe, just in part, for my own benefit. That being said, I am glad that Down Syndrome is different now. I am glad that there is less to be afraid of. I am glad that I have been able to meet people with Down Syndrome and have seen how capable and intelligent and “normal” they really are. I am glad that I have had the pleasure of becoming friends with so many other mothers and fathers of children with Down Syndrome who have journeyed faithfully with us from the day that Ella was born. And I am also thankful for those who, perhaps, were just as afraid as I was and yet, held my hand anyway. And I am thankful for Ben and Jakob, who take it all as it comes without reservations and without complaint.
(Today, Jakob asked me what language Ella speaks…he notices, but he loves her all the same.)
March 21 is World Down Syndrome Day.
There is nothing that I want you to do, and if you want to know more I think you know how to find the information you are looking for
I do sincerely hope that one day,
something you find seemingly so different and scary
will suddenly appear beautiful and full of blessing.
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