The results aren’t final yet, but I’m beginning to suspect that I might be. Jacob’s mum is always more finely tuned to the nuances of those around her. It takes me a while longer to notice the secretive glances and the subtle berth that separates us from the normals. But it’s there.
I’ve been trying a little bit to understand why, but not much. Jacob so long ago became a normal (yes) member of us that his Downs status is just more stuff you have to make yourself remember, like his eldest brother’s occasional bouts of the wheezies or his middle brother’s problems with stinky farts. (Actually I don’t need to make myself remember those at all.) If that sounds trite well excuse my flippancy all over the place but I’m bloody delighted. It is trite. He learns things more slowly than they did but already he’s shaping up to be every bit as much a pain in the backside as they are, and it cheers me up no end. He’s going to get shouted at, and that is fine. He’ll make us furious at times, and that is great. He’ll wreck the place and we’ll put our faces in our hands or – more likely – have a shouty fight with each other about something apparently entirely unconnected. There will be strife, despair and a sense that somebody, somewhere, pressed the pause button on our two lives when we weren’t minding the shop.
In other words, it will be a 33% helping of the same shit we’ve taken to calling life. With loads of other little Ds extras and head melts thrown in. But on the flip side we’ll have this kid who has played more in the last six months with the toys his older brothers practically ignored when they were toddlers, a kid who wakes up seemingly to make you smile every day and who takes delight in the very act of being. His Down syndrome doesn’t break my stride, let me assure you, although he himself very often does. If I’m under time pressure (I’m always under time pressure) and have to rush past the room where he’s whacking the bejesus out of some VTech junk I’ll feel bad that I can’t stop to play.
If you have a kid with Downs who has health issues, then of course these issues can bring hardship and suffering, but they are not Ds. Your child is not Ds. Your child may have it, but that does not define them, any more than being blond, Asiatic, left-handed, good with science or fond of natural fibres defines them. It’s an aspect of their lives, one that most people do not experience up close and therefore fear, or are made uncomfortable by. How Godforsaken would the world be exactly if we were to strip away every aspect of our otherness, each and every one of us? What ‘common’ traits would be left?
Speaking of God, have you come across the website that’s built upon finding a miracle cure for Trig Palin, son of Sarah? I do not mean to offend anybody’s religious sensibilities, but I cannot visit the site for long because when I do I’m in danger of chewing my fingers off at the knuckle. April 18, 2010 is the day when God will be sitting up, listening to the prayers of who knows how many thousand as they implore Him to fix poor little broken Trig. Because make no mistake, these people tell us that Trig is not right. Fair play to his mother Sarah Palin, she has stated that the world needs more Trigs. I’ve gotten ‘the look’ from my better half on more than many occasions when I’ve said that everybody should have one. But it’s very often how I feel. Blessed.
The Pray4Trig people just don’t get that, but I’m setting up Pray4thepeoplewhowanttofixTrig.com which will hopefully enlighten them. My day of prayer will be on April 17 next year, hopefully just in time to stop them piling up God’s email inbox with Trigspam.