Get ready for some beautiful writing.
This is a guest blog from David Sexton, pictured above with his adorable one-year-old son. David is a software development manager who lives in Hoboken, New Jersey. In his blog, Scattering Bright, he writes about parenting his son, who has cerebral palsy, and family life with his three-year-old daughter and wife. David's writing has also appeared recently in two guest blogs on the New York Times Motherlode blog: Out of breath and Swimming in the dark.
Thank you David! Louise
Breaking windows with my son
By David Sexton
One of the things I like most about September is running with my son in the morning. The air is a little cooler and if I time it right I’ll catch the light just as it’s dawning over the Hudson River. And I’ve got my son to help me with the timing – he’s like an alarm clock that won’t take no for an answer.
“Ha-aye-yah! Clatter! Thump!” That’s the sound of my little guy on a good morning.
It means he’s throwing his toys out of the crib with his right arm. And when I hear that ruckus I know that his tosses have cleared the rugs and pillows around his crib and made it out onto the hardwood floors. He can't use both hands - his cerebral palsy prevents this – but he’s learned the trick of throwing discus style across his body. With this method he’s getting some serious distance. He lets out terrific laughs as he makes these throws; kind of like a baby giant hurling rocks. It makes me laugh too.
Today was one of those good days and I managed to get myself out of bed and up the stairs before his playful mood started to flag. The clock said 5:45 a.m. and a dim light was just coming in through the windows.
He must have heard the sound of my steps because he was quiet and looking out for me with a smile when I came into his room.
“Da!” he said as I pulled him up and out for a change before we headed down for his breakfast. When we got downstairs, I set him up in his high chair and he munched on Cheerios while I did warm-up exercises on the kitchen floor. Sometimes he throws his little Os at me – I guess I make a tempting target.
“Nooo!” I say with exaggerated shock and surprise. He just laughs.
“No,” he repeats and throws another Cheerio at me. “No.”
I think that he thinks that ‘no’ means ‘throw.’ It wouldn’t surprise me. He likes throwing things so much, and so many of the things he likes to throw make such a mess, it’s a word he hears a lot.
Today he obliged me by eating (what he didn’t throw) quickly. I laced up my shoes and swept up the floor and took him under my arm. I retrieved the jogging stroller from our car (where it doubles as a travel stroller) and strapped him in.
“Go!” I said before starting my run, pushing him ahead of me. I try to use the run to practise words with him.
On a good day like today he’ll babble and look all around him at the sights and sounds of the city in the morning: delivery trucks, other runners, police and busses. I can see from his movements in the carriage that he wants to get out and play with everything; he looks like a player leaning off the bench, eager to get into the game.
I wonder, especially as I run, about that right hand of his. He loves to use it so much. I wonder if he’ll find an activity that will give him some pleasure some day. I can’t help but notice how much he could do with his good arm alone.
Other people have noticed it too.
“Wow, what an arm,” the technician said to me at the hospital the day of my son’s MRI. He was one of the team of people who prepared my son for the exam. After setting up the equipment, he stayed to help me hold my son while the doctors gave him anesthesia. He was trying to catch my son’s arm, which was darting around quicker than a bat, when he said this.
“Gonna break windows with that arm for sure. Could pitch with that one. Yeah, sure could,” he added with his brisk city accent after catching his arm and gently settling him down.
Those words were a comfort to me, not only because it was good to hear a steady voice when I was upset, but also because those words had come so naturally – they were truly meant. It made me think of all the things my son could do in the future. It gave me hope when I was feeling low.
We spend so much time working with my son on his weak side – the most outward sign of his cerebral palsy. Therapy and exercise are part of every day for him. Every doctor’s visit is focused on that side. So much emphasis on what’s wrong or missing. It gets to be overwhelming.
And even more than that is the feeling that his strength needs to be held back to allow that weak side to develop. Every time we have to restrain that strong right side I feel a little pang. It feels unnatural to do that to a child. The native, sentimental side of me just wants to cop out of every one of these exercises.
“Let him free,” a part of me yelled out quietly for that month he had to wear a brace. “Let the kid throw something. Let him be happy.”
It seemed unfair that he has to work so hard at just being a kid. It made me think of all the other kids that have similar or greater handicaps. I wanted to break him out of that jail – to set him free.
But I know what’s right too. I know that the constraint therapy was (and is) the right thing to do. It’s already made an impact. And as his left side gets stronger and more relaxed, his right arm is growing even more strong and agile. I know the therapy helps.
I took him up to Castle Point today. It’s a hill in Hoboken that overlooks the river. There’s a great view of the Hudson from up there and an expansive view of the New York skyline.
It was a cloudy morning, but the river was calm and the colour of muted bronze in the dim light. Little ferry boats and barges moved across it quietly. I love being up there for a run. Between the city and the river and the exhilaration of running I can’t help but feel inspired. I feel free. It’s a feeling that I want to share with my son. I feel, when I’m like this around him, that we’re just two boys together. I’m not old (or too heavy) and he’s not impaired – we’re just boys running along a river. I hope he feels something of this. I hope a little of that sense of happy freedom rubs off.
“River,” I said to him (and say every morning). I did the same with my daughter to teach her words.
“City,” I added, raising my finger to the skyline. He just looked. I rubbed his little curly head and we headed down the hill. We finished the run and I got my wife and daughter up. It was time to get ready for the day. Time to be serious again.
It’s hard balancing my son’s needs with the ordinary wishes that a father has for a child. Hard to do what’s right. I wish I had that objective confidence that the technician had when he looked at my son. I wish I could see past the work he’ll have to do and know that he’ll have fun too.
I suppose I worry too much. He’s such a happy kid and so naturally active that he’ll probably find his own way to let off steam if I’m smart enough to let him be. He’ll find a way to just be a boy.
Maybe the technician at the hospital is right. Maybe the worst we’ll have to do some day is pay for some broken windows. I hope it’s true. It’s a bill I won’t mind paying one bit.
“Ha-aye-yah! Clatter! Thump!” That’s the sound of my little guy on a good morning.
It means he’s throwing his toys out of the crib with his right arm. And when I hear that ruckus I know that his tosses have cleared the rugs and pillows around his crib and made it out onto the hardwood floors. He can't use both hands - his cerebral palsy prevents this – but he’s learned the trick of throwing discus style across his body. With this method he’s getting some serious distance. He lets out terrific laughs as he makes these throws; kind of like a baby giant hurling rocks. It makes me laugh too.
Today was one of those good days and I managed to get myself out of bed and up the stairs before his playful mood started to flag. The clock said 5:45 a.m. and a dim light was just coming in through the windows.
He must have heard the sound of my steps because he was quiet and looking out for me with a smile when I came into his room.
“Da!” he said as I pulled him up and out for a change before we headed down for his breakfast. When we got downstairs, I set him up in his high chair and he munched on Cheerios while I did warm-up exercises on the kitchen floor. Sometimes he throws his little Os at me – I guess I make a tempting target.
“Nooo!” I say with exaggerated shock and surprise. He just laughs.
“No,” he repeats and throws another Cheerio at me. “No.”
I think that he thinks that ‘no’ means ‘throw.’ It wouldn’t surprise me. He likes throwing things so much, and so many of the things he likes to throw make such a mess, it’s a word he hears a lot.
Today he obliged me by eating (what he didn’t throw) quickly. I laced up my shoes and swept up the floor and took him under my arm. I retrieved the jogging stroller from our car (where it doubles as a travel stroller) and strapped him in.
“Go!” I said before starting my run, pushing him ahead of me. I try to use the run to practise words with him.
On a good day like today he’ll babble and look all around him at the sights and sounds of the city in the morning: delivery trucks, other runners, police and busses. I can see from his movements in the carriage that he wants to get out and play with everything; he looks like a player leaning off the bench, eager to get into the game.
I wonder, especially as I run, about that right hand of his. He loves to use it so much. I wonder if he’ll find an activity that will give him some pleasure some day. I can’t help but notice how much he could do with his good arm alone.
Other people have noticed it too.
“Wow, what an arm,” the technician said to me at the hospital the day of my son’s MRI. He was one of the team of people who prepared my son for the exam. After setting up the equipment, he stayed to help me hold my son while the doctors gave him anesthesia. He was trying to catch my son’s arm, which was darting around quicker than a bat, when he said this.
“Gonna break windows with that arm for sure. Could pitch with that one. Yeah, sure could,” he added with his brisk city accent after catching his arm and gently settling him down.
Those words were a comfort to me, not only because it was good to hear a steady voice when I was upset, but also because those words had come so naturally – they were truly meant. It made me think of all the things my son could do in the future. It gave me hope when I was feeling low.
We spend so much time working with my son on his weak side – the most outward sign of his cerebral palsy. Therapy and exercise are part of every day for him. Every doctor’s visit is focused on that side. So much emphasis on what’s wrong or missing. It gets to be overwhelming.
And even more than that is the feeling that his strength needs to be held back to allow that weak side to develop. Every time we have to restrain that strong right side I feel a little pang. It feels unnatural to do that to a child. The native, sentimental side of me just wants to cop out of every one of these exercises.
“Let him free,” a part of me yelled out quietly for that month he had to wear a brace. “Let the kid throw something. Let him be happy.”
It seemed unfair that he has to work so hard at just being a kid. It made me think of all the other kids that have similar or greater handicaps. I wanted to break him out of that jail – to set him free.
But I know what’s right too. I know that the constraint therapy was (and is) the right thing to do. It’s already made an impact. And as his left side gets stronger and more relaxed, his right arm is growing even more strong and agile. I know the therapy helps.
I took him up to Castle Point today. It’s a hill in Hoboken that overlooks the river. There’s a great view of the Hudson from up there and an expansive view of the New York skyline.
It was a cloudy morning, but the river was calm and the colour of muted bronze in the dim light. Little ferry boats and barges moved across it quietly. I love being up there for a run. Between the city and the river and the exhilaration of running I can’t help but feel inspired. I feel free. It’s a feeling that I want to share with my son. I feel, when I’m like this around him, that we’re just two boys together. I’m not old (or too heavy) and he’s not impaired – we’re just boys running along a river. I hope he feels something of this. I hope a little of that sense of happy freedom rubs off.
“River,” I said to him (and say every morning). I did the same with my daughter to teach her words.
“City,” I added, raising my finger to the skyline. He just looked. I rubbed his little curly head and we headed down the hill. We finished the run and I got my wife and daughter up. It was time to get ready for the day. Time to be serious again.
It’s hard balancing my son’s needs with the ordinary wishes that a father has for a child. Hard to do what’s right. I wish I had that objective confidence that the technician had when he looked at my son. I wish I could see past the work he’ll have to do and know that he’ll have fun too.
I suppose I worry too much. He’s such a happy kid and so naturally active that he’ll probably find his own way to let off steam if I’m smart enough to let him be. He’ll find a way to just be a boy.
Maybe the technician at the hospital is right. Maybe the worst we’ll have to do some day is pay for some broken windows. I hope it’s true. It’s a bill I won’t mind paying one bit.
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5 comments:
This is a lovely, thoughtful post, David.
Thank you for sharing it with us, Louise. And thank you for your kind comments and the link. I'll link to you, as well!
Best,
Kate
This is so beautiful. It hits close to home, for sure, as it so easily brought tears to my eyes.
Thank you for sharing this.
~Laurie
This is a lovely addition to this blog. I read in one of the comments on your blog that you are from Boston. Aha! That explained the old-world feeling in your writing. Look at the apple cheeks and curls on your super-cute son! Delicious. What a charmer.
Off-topic, but here's something that has helped me. I like Gretchen Rubin's "The Happiness Project" blog, especially her post on how to have "a good bad day." It's for days when the mere idea of trying to be happy is so off-base that it's enraging, but it offers tips to turn down the misery in the moment, and set things up to be better later. (She is on Slate, but I prefer the original.) I've been following your blog, and sympathize with the insurance tangles and stressful appointments. So very sorry to hear about all of that.
All the best to you, Julie, and your beautiful family. I feel there is *something* in your writing- potential memoir, novel, essays-- something-- not that everything has to be for sale to be worthwhile, nor even that it has to pertain to your family life. It just has that alive and fully-formed quality which marks all good writing.
Thank you Kate and Laurie.
Thank you also to the poster who thinks my son is cute and that I could write a novel - I'm inspired.
Dave Sexton
The picture of the little guy reminds me of my son at that age, a left spastic hemiplegic who took his first unassisted steps at 28 months. A teenager now, he trains several times a week and competes at regionals and provincials, as a member of ParaSport Ontario. Even though your son is young, it might be a great experience for you to check out a para-sport track meet in your area some day - yes, they're competing in special categories, but they run hard, they train hard, and they play hard - it has been a great opportunity for my son to stay in shape, travel to competitions, and make friends. We checked out our first track meet when he was five years old, and it really opened his eyes to the possibilities; he has been part of a coached running group since he was 6; initially he could skip faster than he could run, but now he can run several kilometres in training, and competes in sprints. All the best with your son - he may end up being your running buddy, even when he outgrows the stroller!
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