Category: parenting

Epilepsy And The Lack Of Freedom

One day last week, after I dropped my son off at school, I walked past the playground and the late kids being hurried by their parents across the street. The kids were a few years older than my son and, on the walk home, I began to think of when I was their age and lived in an apartment complex in Connecticut.

I remember there was a common area between the apartments and the street that was covered in grass, with a big, green boulder that I used to climb, imaging it was the tallest mountain. My friends and I used to meet on the grass and play baseball, or tag, or ride our bikes on the sidewalk through the buildings.

My sister was among the older kids that used to also congregate by the boulder, usually either ignoring or taunting their younger siblings. But there were no parents. Many of our parents, including my mother, were single parents or low income parents trying to make ends meet, so they were working or inside catching up on chores and other duties. So we were left to go outside, and play together, and to fill up our days with whatever we felt like doing.

If the older kids got to be too much, my friends and I would grab our fishing poles and walk through the woods adjacent to the apartments to a small creek where we would catch frogs and small fish and where I swear I saw a river monster (which was probably actually something like a muskrat). There was a sledding hill on the other side of the complex, and patchy wooded areas that we could explore with plenty of trees to climb. Our ability to roam without parental supervision or babysitting by our older siblings made us feel very free.

We don’t have any spaces like that near our house, and living in a big city is a completely different environment than the area around those apartments when I was my son’s age, but I wondered if my son would ever get to experience that same sense of freedom that I had when I was living in those apartments. Even if there were places to roam and their weren’t busy streets to navigate, will his seizures prevent him from being able to run off and play without the watchful eye of my wife, me, or another caregiver? Will he always have to be around other people, particularly someone who knows what to do if he has a seizure?

I’ve always said that I didn’t want epilepsy to make my son feel “less than”, or for it to keep him from doing anything he wants to. But the reality is that it might, especially if we continue to have such a hard time getting his seizures under control. He probably doesn’t notice it as much now, because he’s six and because he’s not supposed to venture out in to the world by himself. But as he gets older, and as he’s not able to experience the same freedom that his friends do, I’m going to need to find a way to make it okay.

April 7, 2016
Father Forgets

Last week, I was listening to the audio book version of Dale Carnegie’s [easyazon_link identifier=”0671027034″ locale=”US” tag=”epilepsydad-20″]How To Win Friends & Influence People[/easyazon_link] on my way to work, and there is a chapter that includes a reproduction of a story by W. Livingston Larned titled “Father Forgets”. By the time the narrator had reached the second paragraph of the story, I had moved myself to the inner edge of the sidewalk, out of the way, and found myself focusing intently on the words. The words that described how I feel most days after my son has gone to bed; the words that describe my interactions with my son and how I correct his every action and why he always seems to be apologizing when he is around me.

It took everything I had to keep my composure as the words penetrated my ears and bounced around in my brain. When the story was over, I skipped back to the start and listened to it again. Then a third time. I was convinced that the story was written for me to hear and I wanted to absorb every syllable.

Navigating this complicated, messy world of epilepsy continues to be a never-ending sequence of impossible situations. But my biggest challenge continues to be separating the condition and its effects from the boy and what is normal or expected at his age. He is so amazing in so many ways and I take that for granted, so I expect him to be amazing in every way and all the time. I forget that he is just a boy. I forget that he is still learning. I overreact hoping that I am curbing any appropriate behavior caused by his medicines or the wiring in his brain when all I am doing is making him feel inadequate and broken and flawed and like he is constantly disappointing me.

In spite of this, he enthusiastically greets me every day when I come home from work. He’ll ask me to play hockey or baseball, or to have a tickle party, because we have fun together, even as I’m wrestling internally to not correct every little thing he does.

I don’t want my son’s childhood to be a constant struggle for perfection. There are enough obstacles and unfair complications in his young life, and I don’t want him to look back on this time and have the happy memories colored with a sense of disappointment.

It is with the most misguided of best intentions that I find myself at the end of the night finding flaws in my own performance and wishing I had done better. Wishing I had taken that deep breath before I replied with a criticism or adding a “but” to a compliment. The habit of finding fault is not an easy one to break.

But the look on his face when I get home lifts my spirits. The laughter at the end of the night inspires me to try again the next day.

Tomorrow, I will try to be a real daddy, too.

Father Forgets

Listen, son: I am saying this as you lie asleep, one little paw crumpled under your cheek and the blond curls stickily wet on your damp forehead. I have stolen into your room alone. Just a few minutes ago, as I sat reading my paper in the library, a stifling wave of remorse swept over me. Guiltily I came to your bedside.

There are the things I was thinking, son: I had been cross to you. I scolded you as you were dressing for school because you gave your face merely a dab with a towel. I took you to task for not cleaning your shoes. I called out angrily when you threw some of your things on the floor.

At breakfast I found fault, too. You spilled things. You gulped down your food. You put your elbows on the table. You spread butter too thick on your bread. And as you started off to play and I made for my train, you turned and waved a hand and called, “Goodbye, Daddy!” and I frowned, and said in reply,

“Hold your shoulders back!”

Then it began all over again in the late afternoon. As I came up the road I spied you, down on your knees, playing marbles. There were holes in your stockings. I humiliated you before your boyfriends by marching you ahead of me to the house. Stockings were expensive‐and if you had to buy them you would be more careful! Imagine that, son, from a father!

Do you remember, later, when I was reading in the library, how you came in timidly, with a sort of hurt look in your eyes? When I glanced up over my paper, impatient at the interruption, you hesitated at the door. “What is it you want?” I snapped. You said nothing, but ran across in one tempestuous plunge, and threw your arms around my neck and kissed me, and your small arms tightened with an affection that God had set blooming in your heart and which even neglect could not wither.

And then you were gone, pattering up the stairs. Well, son, it was shortly afterwards that my paper slipped from my hands and a terrible sickening fear came over me. What has habit been doing to me?

The habit of finding fault, of reprimanding‐this was my reward to you for being a boy. It was not that I did not love you; it was that I expected too much of youth. I was measuring you by the yardstick of my own years.

And there was so much that was good and fine and true in your character. The little heart of you was as big as the dawn itself over the wide hills. This was shown by your spontaneous impulse to rush in and kiss me good night. Nothing else matters tonight, son. I have come to your bedside in the darkness, and I have knelt there, ashamed!

It is feeble atonement; I know you would not understand these things if I told them to you during your waking hours. But tomorrow I will be a real daddy! I will chum with you, and suffer when you suffer, and laugh when you laugh. I will bite my tongue when impatient words come. I will keep saying as if it were a ritual: “He is nothing but a boy‐a little boy!”

I am afraid I have visualized you as a man. Yet as I see you now, son, crumpled and weary in your cot, I see that you are still a baby. Yesterday you were in your mother’s arms, your head on her shoulder. I have asked too much, too much.

-W. Livingston Larned

March 3, 2016
The Lesson I Can’t Teach

When my wife told me that I was going to be a dad, I think I did what most guys do when they are given the same news…I freaked out. Once I had sufficiently calmed myself down, however, I did the next thing that many guys do…I thought about all the wisdom that I had to pass on and the lessons that I would be able to teach my child.

How to throw a ball.
How to tell a joke.
How to shoot a puck.
How to ride a bike.
How to program a computer.
How to cook a meal.
How to change a light switch.
How to drive a manual transmission car.

The first five years, I was checking things off my list all the time. My son had a wicked slapshot, he could throw a ball, and he could expertly tell three knock-knock jokes.

Knock-knock.
Who’s there?
Banana.
Banana who?
Knock-knock.
Who’s there?
Banana.
Banana who?
Knock-knock.
Who’s there?
Orange.
Orange who?
Orange you glad I didn’t say banana?

(It’s still funny.)

Of course, that was before he had his first seizure. After that, his epilepsy got complicated. We spent weeks at a time in the hospital trying to get a handle on his seizures and, suddenly, my list didn’t matter. What mattered was something that I was woefully incapable of teaching him, and that was what it meant to live with epilepsy.

It was a punch to the gut. When I dreamed of being a father, it always involved my son coming to me with a question and me, for some reason around a campfire (we haven’t camped since long before he was born), wisely answering his question with a profound philosophical response, expounding on complex theories and providing fatherly guidance. But here he was, on only his fifth trip around the sun, and I had already run in to an answer that I could not give and a lesson that I could not teach.

I’m never going to be able to teach my son how to live with epilepsy. But I can teach him to never give up. I can teach him, even when life gets hard, to believe in himself and to stand up for himself. I can teach him that he can rely on his mother and me, and that he is never alone. And I can teach him that his life and what he can accomplish is still wide open.

In the end, these are the lessons that are most important, anyway.

February 11, 2016
Epilepsy, The Future, And The Battle Between The Heart And The Mind

If you ask my son what he wants to be when he grows up, he always leads with “a hockey player”. Sometimes he’ll add another sport, or perhaps a doctor, but everything starts with and revolves around first being a hockey player.

According to his plan, he is going to play in the NHL and whichever team he plays for, that’s where I will live, and I will follow him around as he jumps between all of his favorite teams. “That’s a great plan,” I tell him.

Inside, my heart and my brain drop the gloves.

My heart wants him to follow his dream. It wants him to watch a hockey game or to play hockey in the basement and know that hockey is what he will do with his life, and to live and reinforce that ambition every day. My heart wants him to hold on to that goal and have it drive him to be a better skater, a solid teammate, a focused student, and to know what it feels like to overcome an enormous challenge to achieve a dream.

My brain remembers what he was like last year when his ataxia and lack of balance made most physical things, including hockey, impossible. It contemplates the odds of playing a physical sport with seizures and epilepsy that is still not fully under control. My brain wants to err on the side of caution and to focus his attention on something more realistic.

Like many hockey fights, there is no winner…the two sides just tussle for a few minutes and then have a seat in the penalty box. Neither side wins in my fight, either. The skirmish only brings on more questions. Should I encourage him to continue to pursue his dream and risk devastation when I have to tell him he can’t join a team because of his epilepsy? Should I have him set more realistic goals now to avoid that heartache? How do you tear away the dream of a six-year-old boy?

I’ve decided that you don’t.

The future is too uncertain to predict the course of his life or the part that epilepsy will play in it. Yes, he might be burdened with seizures for the rest of his life. Maybe they will get worse. But he might also outgrow them. Someone may develop a better medicine, or they may find a cure, or a new device to control or eliminate his seizures.

The only thing that I can do is focus on today. Today, and every day until it is proven otherwise, I’m going to do everything I can to support his aspiration to play hockey. We have a skating coach, and work with pucks off the ice. We talk about teamwork, and strategy, and going on the road with him and the team. We watch hockey games and talk about what it will be like when he is playing as if it is an inevitability because the most assured way of him not reaching that goal is to discourage him from trying.

February 4, 2016
Actually, My Son Is Not “Fine”. But He Is Amazing.

I spoke with an administrator at my son’s school, talking about how the year was going so far, asking about how the replacement for his one-on-one was going, and just generally checking in. The administrator said that my son seemed to be doing “fine”.

“Actually, ” I said, “he’s not fine. He has epilepsy. Some mornings, he has seizures. Then we give him his anti-epileptic medicine and try to help him keep his attention focused long enough to get dressed for school. Luckily on most days now, he can stomach breakfast. The diet that he is on is really hard on him, but hey, it helps with his seizures. Then he walks or, on good days, rides his scooter a few blocks to school. We’re grateful that the short trip doesn’t tire him out as much as it used to when school first started. Then we drop him off in to a class that has 29 kids and hope that his one-on-one (when he had one) cares enough that day to help him focus on his class work and hopefully pay attention long enough to pick up what is being taught that day. He can’t follow more than one direction at a time, and it takes an enormous amount of energy to stay focused for that long. By mid-morning, his brain is already exhausted and his body starts to follow, but he makes it to lunch, where he usually just watches his classmates eat. Recess, though, is his favorite part of the day, where he can play with his classmates with whatever energy he has left, although I think he usually wills himself to fake having energy so that he can just be with other kids. Then he packs up, heads home, has a small snack before his body and mind give up and he has to take a nap, just so he can wake up and make it the rest of the day. That’s not what I call fine.”

The administrator was caught off guard by my rebuttal. “I just meant that academically he seems to be where he should be.”

“He’s doing well academically because after he wakes up from his nap, our nanny reads and works with him to help reinforce what we’re hoping he’s learning in class and missing from the afternoon sessions. By the time I get home from work, he’s usually exhausted mentally again, but we get to play while dinner is in the oven. Well, unless it’s our night to go to behavior therapy. After dinner, we pop him full of pills again, head to bed, and then repeat the process for the foreseeable future.”

I don’t blame the administrator. He only catches glimpses of my son throughout the day. With other disabilities, there might be some external indication that a child is different, but with epilepsy and its related complications, you may not catch the signs unless you have a reference, or spend enough time with a child, or happen to catch a seizure. But while I don’t blame him, I also wanted to dissuade him from thinking that my son was just another kid and, just because he wasn’t seizing at school, that he was “fine”.

“Fine”. “Fine” doesn’t reflect the struggle he has to keep control of his body. “Fine” doesn’t show the foggy side effects of his anti-seizure medicine that clouds his brain, or the complicated, restricted diet that sometimes turns his stomach. “Fine” doesn’t capture how hard he has to work to stay focused or follow direction or put things in sequential order. “Fine” doesn’t get the help he needs at school so that he can try to keep up with the kids that aren’t filled with brain-altering drugs or seizing every day. “Fine” doesn’t convey how difficult it is for my son to make it through the day.

And yet, he does.

No, my son is not “fine.” But he is amazing.

January 14, 2016