World Down Syndrome Day
It’s here again. It comes every year, just like Easter or Christmas or my birthday. You would think I would be prepared, ready. But it always catches me off guard. Even though I stare at the date on the calendar for weeks. Today is World Down Syndrome Day.
Today is James’ day. But he doesn’t know it. Doesn’t care. This is the beauty of the syndrome.
James no more wants to celebrate his differences than I want to celebrate my second annual 50th birthday.
It is “US” who care about such things. It’s like when someone you love dies – they don’t care how grand the funeral is or what people say in their eulogy, it is for the ones left behind to help us morn. Nothing changes for James today. We will do what we normally do; eat pancakes, watch Elmo Has Two Ears over 200 times, eat noodles at one of his favorite restaurant, toast with our Sippy cup and freely give hugs to strangers.
No doubt you will see numerous posts today from people all over the world celebrating those in their lives who have an extra 21st chromosome. (People born with DS have 3 of the 21st chromosome where typical people have two. Thus we celebrate on 3, 21.)
And my hope is that with every post you see and every slanted-eye, low-set ear, awkward smiling photo you come across today, that YOU might be changed.
Change is hard. And sometimes it can be slow and painful. It can take years for people to look at life differently, to look at different people differently. I know, because I was one of them.
For many years I hated this day. Cursed this day. I didn’t want to celebrate my son who was different. But as I grow emotionally in my own walk with this syndrome,
I realize more and more that my fear of celebrating was just my ignorance.
Pure ignorance. I didn’t want to let myself “be one of them”. I thought that ignoring my fear and reality would make it go away. But now, after years of therapy, Lexapro, a consistent supply of chocolate and a few timely margaritas, I have learned that I had it backwards.
The more you embrace the more you feel love.
Be it a special needs child or a illness or a job change or a heartbreak.
Being a special needs parent never gets easy. The weight of it never lifts. And today will no doubt have its challenges. My guess is that there will be potty accidents, spilled milk as we try to learn to use a regular cup, frustration over not being able to understand my own child’s language. But in-between the hard times, we will lift our Sippy cups and say “cheers”! Cheers to emotional growth. Cheers to awareness. Cheers to extra chromosomes that can melt away ignorance and fear.