I watched the little boy and his family during mass this evening. I know his mother. The boy is her third child, the first and only boy, probably a boy longed for by the father who held him during the entire service, who kissed the boy’s soft cheeks with aching tenderness.
The child has Down Syndrome. The kisses were saying: I love you. I love you in spite of, because of, no matter what. I love you for the world to see. They were the perfect kisses, whole, real, infinite.
He walks on his toes. He can’t sit still. His almond shaped eyes are ice blue, hair surfer blond. He is maybe five years old. His tennis shoes were decorated with Spider Man.
I compared him to my own son, now seven. My son is handsome too, dark hair and Hershey’s Kiss eyes. He is funny, affectionate, adorable.
And he is autistic.
He has trouble sitting still, staying on task, understanding language. He has the social skills of a three year old, gets stuck on ideas and movie scripts. He may never live independently, have a job, drive a car, marry or vote.
I kiss him a lot, an inordinate number of times each day. I kiss him in an almost desperate way, breathing in his cookie smell, the sweet of his doughy cheeks. I kiss him to disappear from my world, to enter his. I kiss him to seal the moment, a perfect eternity.
The other mother and I were disappointed when we learned that our sons weren’t the sons we’d hoped for, expected. Was it wrong to expect a healthy child? Her third, my fourth. We’d only known success, healthy, the usual. We took these things for granted, believed that nature only screws up other people’s kids, not ours. We were special, different, protected. Our lives were lucky, cocooned.
Tonight, with my eyes half focusing on the alter and two priests, one with a cane, I saw a glimpse of my future. My son was in his early twenties, strong, maybe a little too strong. I was medicare age, not so strong, still caring for the son who wasn’t the son I’d hoped for, expected.
Some days, this image doesn’t scare me. I love him. We’ll be okay.
Other times, the image is too terrifying, like tonight. I didn’t want to look at it, so I refocused my eyes, stared at the slain Jesus, the priest barely able to walk, his blood red vestment and stole, the white alter approached with reverence where the ordained bow and kiss the clean white linens.
They have a ritual. I have a ritual. We have days, which begin and end about the same. We wake up, every day, and live. I feed my son, literally and figuratively. I walk beside him in a world made for others, not the disabled. He is different. And so am I.
I’m a better person, mother, human, because of him. I’ve made more friends, real friends, living in Autism World. I can write from the bottom of despair, parental despair, write my way from bottom to top. I can make another mother of a disabled child smile, because it’s not over, even if it’s not the adventure she’d hoped for, expected. I’m right there beside her and we’ll find ways to laugh at the absurd, squeeze our over-sized issues into a new Spanks-like normal. We can have normal, just different.
But still, sometimes I feel disappointed when I remember what might have been, when I forget how much I love him, when I compare; when I focus on the cane and not the human, on the white and not the alter, on the cross and not the kiss.