When Mia was a wee babe, I interviewed an author who had written about her experiences with her young son. It was a memoir about the early years with a child with Down syndrome. I asked her a question – Why is it that there are so many memoirs written about the early years, but not so many as they grow up? She thought for a moment and then responded, “It might be because the problems become more complex.”
Mia is going to turn 10 in November. I know. Let that sink in for a minute. 10. And I’ve noticed that I’ve rarely written in this blog over the last few years. I even started posting fiction. And I don’t feel like Mia’s problems are more complex. She actually even stopped needing one doctor when the hole in her heart closed. Her problems are just continually different every year.
I think that the memoirs stop because at first Down syndrome feels like a giant mountain that you have to climb, and you showed up entirely unprepared. You’re sitting at basecamp wondering how you’re going to breathe up there? But then the other climbers who have already been up that mountain hand you some supplies, explain which is the best route, and tell you you’re not climbing Everest after all. This mountain isn’t as big as you think. It’s an optical illusion.
And then you set off. And at first you think, “There is no way! They were lying to me!” But the farther up you go you realize it’s more of a hill than a mountain, really. And sure there are some steep parts and you might get frustrated here and there and want to throw all of your things down on the ground and have a temper tantrum, but you keep going.
After a while, you start to notice that there are some pretty amazing wildflowers up here on this hill. And the way the sun hits the hill just so makes your heart leap in your chest. And you start to notice how crisp and clean the air smells up here. You wonder where this hill has been all your life. You belong on this hill. You were made to climb it. And sure, sometimes storms roll in and you have to deal with the rain, and the sadness still creeps into your heart, but then the rainbows come and the stars shine and you nod to other climbers who completely understand.
So my update is that there is just not much of an update. But if I had told the me of 10 years ago that I would put that little girl with Down syndrome and her big brother in a car and drive to Florida by myself, I would have laughed. Because back then I was still wondering how I was going to breathe up here. Because truth be told, they were right. The hill is just not that tall. And that’s why I keep writing. To let the folks at basecamp know.