Every once in a while, I’m reminded that my son has Downs Syndrome. Most of the time, my son is just my son and the day has its rhythms. He gets up. He needs a change. He needs to eat. He needs his meds. He needs to be cleaned up from breakfast and given time on the floor to practice crawling. He needs a nap and then the cycle begins again for lunch. Paul’s small size belies his age and so the delay that would otherwise be thrown into sharp relief by past experience with children this age is muted. He looks six months. He is almost one. He “revs” in place and tries to get up on all fours and sits with a little support. He says “Mommmm” and “Daaaaad” and eats mush and laughs at his own face in the mirror. These are things that babies do at six months. The things he does and his size allows my mother’s heart to be fooled into downplaying his condition.
But then I go to the grocery store or the park or for a walk and there will be a child the same age as Paul and I am immediately grounded in reality.
This past week, reality came at Sunday mass. She is round, she is plump and she is trying to stand. Her mother hands her cheerios which she greedily grabs and pops in her mouth. The mom does not worry about choking. The child does not choke. I do not want to be haunted by his diagnosis and so I bury those thoughts about mental retardation and where on the bell curve my son might fall. I discipline my mind to focus on how happy he is, how the physical therapist said he’s making great progress and the fact that in his first year of life, he’s already beat the odds by surviving open heart surgery. It doesn’t work.
Seeing the daughter toddle step towards her mother makes me stare at my son a bit harder. Just as his size masks his age, his face does not betray his Trisomy 21. No one knows unless I tell them that he has it. Right now, his handicapping condition lurks. Every parent of a child with disabilities fantasizes about not just having their child overcome the condition they’ve been diagnosed with, but somehow transcending the condition, rendering the fear that dogs anyone having a child with special needs, powerless and empty. I am no different. Forced to see how he is different, I pine for what is the same, then I grow annoyed with myself for not loving my son better.
One of Paul’s graces is linked to his condition. Paul forces the tempo of our lives to slow down, and all ten of us to pay attention. His brothers know when he got his first tooth (July 2nd); one of his sisters announced when he started rolling over (he could do it before he had surgery and spent the 41 days in the hospital being annoyed at being tied down); and I woke to the first said “Mommmmmm.” (the week of Easter). The jaded parents that had seen everything 8 times before, now marvel as if this was our first child, because everything Paul accomplishes is a triumph over adversity, a story of overcoming a barrier that we as his parents cannot yet gage. “Behold, I make all things new. ” comes to mind.
The priest is speaking about how radically Christ wanted the people to take Him into their hearts, to gnaw on Jesus, to feast on the bread of life. My son suddenly lurches forward in my arms and gives my nose the largest loudest most ardent kiss he can manage. My face is dripping with drool as he completes his kiss with a pleased bobbing in my arms at the people behind me. My son has just gnawed at me the way I’m supposed to gnaw at Christ. Paul’s kiss revealed God’s love and how we’re supposed to love God. In that fragile impulsive moment I suddenly no longer envied even a little, the mom with the girl who could easily eat cheerios. I feasted on my son’s merry blue eyes and expressive smile as he delighted that his mom had fixed her eyes on him.
I will never go hungry, those eyes will always be like this, holding this much light and love. God in His wisdom, gave us this son on top of all the other blessings that are our four other girls and four other boys, to push us beyond what we thought we could handle, so we would rely on Him. God gave us this son that needed more than we could easily manage so we would need to be fed, would want to feast on Christ. God gave us Paul to gnaw on our hearts. God gave us Paul so Paul could throw our hearts open and make them roomy for Christ.
Copyright 2009 Sherry Antonetti