Today marks the first day of Down Syndrome Awareness Month. In the beginning, I couldn’t even say those words. Because if I didn’t say them, maybe this wasn’t real. When I had to say them, I would speak them in shame. And I remember that I wouldn’t whisper because then I would’ve had to say them again, louder. I couldn’t bear to say those words more than I needed to.
And as soon as I would say it, my baby has Down syndrome, I would start crying. They would tell me they were sorry. Then I would feel this rage and shame and despair. Rage at them… how could they say that about my baby? Deep shame over my despair. Rage at myself for all of it. How did I expect them to react? Look at me, crying while holding this brand new life in my arms. A juxtaposition of deep pain and new life. I am exhausted just thinking of those times. I remember them like they were yesterday, and also feel like someone else lived them.
I can’t quite remember when the tide began to turn, when the sea began to recede and I started to see more solid ground under my feet. I imagine it happened slowly, as the tide goes. As times of grief and sorrow go. Little cracks filling up, becoming stronger. Feeling more sunlight than darkness. A slow return to life, where the hard loosens its grip so you can feel more than just anguish.
My precious gift of a baby brought me back to life all those years ago.
And now, here I am. From not being able to say the words “Down syndrome” to shouting them in celebration. Grateful for the life I have been given. Seeing things I never would have seen if I hadn’t been drowning. I found my way only because I was lost. Don’t get me wrong… things aren’t always easy. Because, well, that’s life. But I get my strength from the hard, from opening doors for my son and shouting his worth. And then watching him open his own doors and shouting his own worth.
For me, this is what Down Syndrome Awareness Month means. Showing people with Down syndrome living their lives. Lives filled with ups and downs, celebration and heartache. Working hard and being successful. Or not. Falling down, getting up. Sometimes things not working out. And that’s ok. Knowing that the love of those who love you will sustain you above all else. It is about people with Down syndrome living deep, rich, authentic lives, just like the rest of us. Being seen as a person who happens to have Down syndrome. Not a stereotype, but a person. Not a boy with Down syndrome, but Ian. The one who rescued me from the deep.