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.
One of the reasons we’ve been content to simply watch and wait to see what would become of him came to me on the same morning that he did. His birth was scheduled, with a team of specialists standing by and transplant directives signed.
Then early in the morning as we prepared to leave for the hospital I had a specific quiet moment where I knew that this child was looking forward to his own arrival on the earth. And he was supremely happy about it!! I said to myself: “Surely he knows what he’s coming to . . . if he lives 10 minutes or 10 days it must be okay . . . so we’ll just see how it goes.”
The first time I set eyes on him, except the brief glimpse as doctors rushed him out of the delivery room, we were both laid out flat on wheeled tables with tubes and sensors coming and going. He weighed 9lbs. 15 oz. so when people in the NICU (neonatal intensive care unit) asked “Which one is yours?” we felt almost boastful pointing to him and answering: “That big pink one.” Anyone connected with the NICU will know what I mean. Not many babies in there are half that weight or possessed of as much natural color.
Thus went his first 10 days. Then of course 10 years, and now more than 20. His health is great and he is bright and clever. Which brings me to another reason we’ve enjoyed having him in our home all this time – his personality. He doesn’t show it much outside our family. Maybe we treasure it all the more because it seems like a shared family secret. Even through the “terrible twos” (which lasted from age 5 to 15) he has always been ready with ways to show us that he is still quite happy at being here.
Little things that occur on a daily or weekly basis are permanently exciting to him. Truthfully, I can answer the same question the same way literally half a dozen times a day and he’ll be just as pleased with the sixth answer as the first. Additionally, when he pulls a trick on someone there’s a glinting self-satisfaction in his eyes that runs very deep. When the trick’s on me and I hear that bemused, somewhat disgusted “Mom-mmmy!” – I haven’t always been fooled but it makes him so happy that I go along.
Many of his peers are the same way. Joy in the moment, and unafraid to let anyone know about it, is a trademark of the eternally uninhibited. The slide show at an awards banquet for his Special Olympics Golf Team is an example. A cheerful Olympian, probably 30+ years of age, saw himself in a photo and called out with whole-hearted glee: “There’s me!” Every time thereafter when his face would appear he’d shout with equal verve: “There’s me again!” And the next time, and the next. I had to smile thinking – these kids sure get a kick out of seeing themselves on the screen. Contemplation brought me to the conclusion that this feeling is likely not unique to those “kids”, but the ability to let it gush out might be.
My Down syndrome son is having a pretty good time in his life. For people like him the world spins much the way they choose for it to. And at their own preferred pace. That’s not a bad gig if you think about it.
How are things in your life? Are you letting yourself enjoy whatever is going on? Did you get to do this recently at your local store? . . . Seriously, didn’t you want to?