Blog-hopping with the T21 Writer’s Alliance today. Check out With a Little Moxie for the others participating in this week’s hop.
The prompt for this week is “If I Knew Then What I Know Now.” This is something that comes up a lot in disability world, especially as we try to help families understand a new diagnosis. What would we tell our scared, tender selves? What would have helped to know, and would it help us during those early days?
What do I know now about Down syndrome? I know it’s not a death sentence; I know it’s not the single greatest thing that will shape my child. I know it’s just one aspect of who she is. I know it’s what gives her that darling button nose, those tiny ears, those beautiful eyes. I also know it’s the reason I have met some pretty incredible people. I know hers is a life worth living.
But knowing all that then, when I held my day-old infant and wailed over the things I thought I lost, wouldn’t have changed anything. I had to grieve. I had to be angry. I had to despair. I had to deal with it – there was no way around it, I had to go through it.
And the thing is – all of what I know now was readily available to me when she was born. Every last shred of it. Blogs, internet forums, books. It’s all out there, and believe me, I was looking. I was seeing it, but I couldn’t hear it. I wasn’t ready for it, and there were definitely days when it felt like “well, that’s nice for you but it doesn’t work for me.”
I own that grief. I own that darkness. I’m not ashamed of it, and I don’t wish I never experienced it. All of that – the dark right alongside the bright joy my daughter brings – has shaped me into the mom, wife, and woman I am today.
So I guess what I would tell myself is simply this: “What you feel is ok and will help shape who you become.”