To kill time on subway rides, I used to imagine what each rider’s life might be like. Married, kids, pets, jobs, worries – I would make it all up. There were usually some sordid details, and happy circumstances were rare but special.
This week, we spent a little time at the hospital for appointments and checkups (no cavities! hearing is normal! and I didn’t have a Subway sandwich!). While walking down the main hallway, something must have triggered my brain, and it started playing the subway game. The Hospital for Sick Children is not the ideal place to play this game. I watched a mother, probably exhausted from a long, sleepless night, help her daughter go for a little walk. She has Down syndrome and is going through radiation treatment. As soon as I started imagining her thoughts, I had to shut it off. I don’t know how many of the parents I pass by at the hospital do it.
As for the children, especially the young ones, you can tell many don’t know what’s going on quite yet. The older kids, though – they probably know. And I’ve noticed that many are more quiet and reserved than their peer group. Sure, they might be in pain at the moment, but something tells me it’s not just that. I wonder if they are quiet in order to blend into the background, to not be noticed.
Marshall, at the age of two, doesn’t give a damn. He’ll wave and call out to every car that passes our house. He smiles at every dog-walker, and tries to make friends with anyone who will let him. He doesn’t hear the kids who whisper or, as I heard the other day, “He looks like a pug!”
Even at the hospital, though, you see examples that give provide hope. I saw you the other day at the dental clinic on the service floor. You were at the hospital alone. I have never met you, and at first, all I knew of you was your voice. There was a mellifluous quality to it, and your vocabulary was stellar. I was sitting in the small waiting room off to the side of the main area, my eyes closed for a quick second while Marshall played with his dump truck. You were also so funny! The way you were engaging and interacting with the office administrator – you were quick, and your voice so confident. I opened my eyes to see who was talking, and there you were!
I saw you the other day at the dental clinic on the service floor. You were at the hospital alone, a rarity in a children’s hospital. I have never met you, and at first, all I knew of you was your voice. There was a mellifluous quality to it, and your vocabulary was stellar. I was sitting in the small waiting room off to the side of the main area, my eyes closed for a quick second while Marshall played with his dump truck. You were also so funny! The way you were engaging and interacting with the office administrator – you were quick, and your voice so confident. I opened my eyes to see who was talking, and there you were! Still a teenager if you are still accessing services at a pediatric hospital, a young black man, exuding confidence. And you also have a facial difference. Without staring, I have to admit I eavesdropped on you for the next minute, just to hear you talk. I saw you later that morning while we were coming down from Marshy’s ENT appointment. You must have been on your way to another of your appointments. You had a self-assuredness and familiarity with the hospital that was at once an impressive example of your independence, but also sad because of the amount of time you must have spent there. I could hear you mention an appointment at plastics, with the same surgeon that is helping Marshall. I hope this isn’t condescending, but I’m so proud of you. Your friends and family are lucky to know you! And honestly, if the rest of the dental waiting room was any indication, a lot of people likely notice how wonderful you are on a daily basis.
For the parents in the Apert community, I know it changes you too. The shock of finding out your baby has Apert syndrome has faded, but it has never worn off for me. It’s always in the background, and has fundamentally changed every single thing I do and think. This could very well be a by-product of an unusual brain damaged by years of no-helmet bike-riding as a child, but I can’t stop thinking about it.
I love going for walks with Marshall, and truly, negative interactions are so rare, but as soon as we leave the house, I put on my mental armour and harden my stare whenever we pass people, especially kids. Kids! It’s true – I furrow my brow from afar when new kids meet Marshall for the same time. I’m ready to shoot lasers from my narrowed eyes, just in case. And you know what? I know it works sometimes, like the time a few weeks ago when a group of teenagers had just started to laugh at him when they saw me sitting about 20 metres away, clearing glaring at them. They shut up instantly. When they started to talk quietly, I stood up, and they immediately backed off.
Is any of this healthy? Of course not. Only a lunatic would think this is going to be good for Marshall’s social interactions, but I cannot. My skin is thicker, and if it wasn’t for Bridget’s sanity and optimism, we’d be in trouble.
My singular purpose in life has become raising my kids and helping Marshall prove that Apert syndrome is nothing more than a bump in the road. It has to be like that, even if it can’t be like that, because it has to be. It just does.
It takes a lot more to feel emotions now than it did before. A routine bad day at work or a rough night of sleep feels relatively like a joke compared to anything Marsh has come through. Happiness is seeing my kids hug and hearing Marsh learn a new word or two. It would be nice to broaden my sphere a little closer to the way it was before, but maybe you can’t? Maybe that’s just what happens when your child needs a lot more care. There is a necessary tightening and focusing of your concerns and how you spend your time, as a friend and parent of a child with special needs put it.
On the other hand, I’m sure many parents don’t feel the same way I do, and that’s great. I wish I could do it! And maybe I will. One day, I hope Marshy reads this and says to me, “Dad, why did you waste so much time worrying? You could have been playing board games instead of stressing out!” It was all worth it, will be my response.