When my Down syndrome son was born, agency people and programs came rushing at me. One phrase kept being repeated: “You have to be his advocate”. “Yea, right!” I thought. “How can I go to battle for him when I don’t even understand what all these options are that you’re reciting? I don’t know how to find out what he needs. And I don’t know how to best deliver what he needs even if I knew what it was!”
The air is fresh, the sun is out, there’s a light breeze that’s just the right temperature. Greens are greener. Pinks, yellows, and reds are brighter. It must be spring again – a time when so many things take the chance to start over. When I saw the following saying the other day it felt like a breath of spring to me, and it also reminded me of my Down syndrome son: “A flower does not think of competing with the flower next to it. It just blooms.” (Zen Shin)
Sometimes my Down syndrome son is not where he’s supposed to be but the story of missing him can end with a smile. In the process of writing last month about losing track of one’s child and the horror of “whereabouts unknown”, additional life stories of ours also came to mind. These stories have to do with learning about my son’s thinking, appreciating its literalness, and perhaps even how he outsmarts us all.
I Can’t Find My Baby!
If we’d known how much we were going to enjoy him, those first few “down syndrome days” would have been very different. It isn’t that I thought we might not enjoy him, but in those first few days there was so much unknown that it did feel like we were navigating a bit of a bumpy sea. We had listened to experts for 6 months telling us about various physical and mental conditions of our expected Down syndrome son. But then he did live to survive birth so we had to move on quickly to what might come next. There were a lot of less-than-optimal outcomes in this next set of predictions as well. But the days ticked by and our boy beat all those odds so we’ve just enjoyed him ever since.
At Christmastime, we remember the reason for all the world’s joy. And celebrate the day He became a small boy.