In the days, weeks and months following Ethan’s birth, my first thought each time I opened my eyes was “I have a baby with Down syndrome.” It was profound and all-consuming. His diagnosis loomed large in my mind. He was a tiny, fragile, bird-like porcelain doll. He was absolutely adorable.
But his diagnosis was a large, wet wool blanket that covered everything we did and each experience we had.
Those same days, weeks, months and eventually years were consumed by therapies, doctors, tests, books, lectures, conferences. Life was intense and exhausting. Down syndrome was a giant. When he was young, I wondered if I would ever see the day when Down Syndrome would become a facet of our life instead of the over-arching theme that drove our daily tasks and worries.
Fast forward 25 years. I am now the mother of a grown son who has Down syndrome. The words do not hold the crushing impact that they once did. They are a part of a description of who Ethan is along with funny, loud, witty, determined, resourceful, and fresh.
And it has become something that I do not think about often. I don’t know what day that switch was thrown, or if it was just a gentle re-routing of a flowing current. It has become a part of what makes Ethan who he is, but it moved over and made room for all the other things that make up who he is.
When each of his brothers reached a certain age, they each asked, in turn, “What would Ethan be like if he didn’t have Down Syndrome?” My answer has always been, “A different brother. A whole other person. Not Ethan.” All three have agreed.
It was hard to imagine that I would get to a day that I would be forever grateful that Ethan is EXACTLY who he is. It is a path that few people will have the privilege of walking. It has been and continues to be an extraordinary gift.
Longtime Sesame Street writer Emily Perl Kingsley still said it best….