Category: parenting

You Can Dance If You Want To

Last weekend, we went to an art festival down by the river. The sun decided to make an appearance, and we walked the steps between the booths of artisans under its warm glow.

It was Mother’s Day, so we went down as a family but my wife shooed us off occasionally so she could inspect every object from every artist at every booth while my son and I hopped down the steps and leaned over the ledge to watch the ducks and the fish in the brown, murky water.

Every so often, my son and I would wander back up to where we saw my wife last and play a game to see who could spot her first. We would join her and look at a few of the booths before again wandering off to look for toys or games or artistic curiosities.

On one of our excursions, we came to a section of steps that was near the empty stage that had music being piped through the speakers. My son asked me to take pictures of him jumping off a pillar near the steps because he’s six and he is a boy and that is what boys do.

As he finished inspecting the proof of his daring feat, a new song pumped through the speakers. Without hesitation, my son started to dance.

When I say dance, I don’t mean that he danced in place. Rather, a year of hip hop classes all culminated in a Jamiroquai-esque virtual insanity explosion of choreographed maneuvers from the top of the steps all the way down to the bottom where he ended his performance with a set of finger snaps and a bow.

I was never that brave.

I would have been (still am) too embarrassed to dance in public. Even though my ten-year plan includes a TED talk, I’m terrified of being in front of people or being the center of attention.

Clearly, my brave, brave son doesn’t have that affliction.

Sure, he has his moments. He gets nervous or self-conscious when he drinks his oil in front of his classmates. He sometimes won’t do something brand new in front of other people, although, usually he says he won’t but winds up trying it anyway.

As a parent, there are a lot of things I want differently for my son than I had growing up. I never really felt secure or safe. I didn’t feel like anyone really had my back, or that it was okay to try something and fail. I always felt different, and that being different was a very bad thing.

I desperately wanted my son to grow up free from the fear that gripped me as a child and that rears its ugly head so many years later. I think it’s even more important that he feel safe, and secure, and supported, and special because he will be made to feel different because he has epilepsy. Feeling different is okay; feeling “less than” or bad or wrong is not.

Most days, I wonder if I’m doing it right. I wonder if I tell him to “stop” too much, or if he sees my discomfort when eyes turn our way because he is being silly, or inappropriate, or simply because he is being six. But I am encouraged when he feels the need to dance and does it as if no one is watching (or maybe because everyone is watching). When he does, I feel like maybe, just maybe, he’s on the right path.

“We should consider every day lost on which we have not danced at least once.” ~ Friedrich Nietzsche

May 19, 2016
Playing Teeball Again For The First Time

Last year, we signed our son up for teeball. He was only out of the hospital for a few months and was still having seizures and suffering from severe ataxia and behavioral issues from the seizures and medicine, but we wanted to give him a bit of “normal”.

There were times when he would be in the field, in the “ready position”, wobbly and shaking from the ataxia, and he would have a seizure…the audible cue, his body glove slumping down and his body sagging. These seizures were short, he would spring right back up, back in position and waiting for the ball. If we tried to get him to leave, he would say no so we would monitor him and he was usually able to finish the game.

When the game was over, though, he would be so exhausted, and the exhaustion was sometimes followed by episodes of his extreme, angry behavior. We’d put him in the stroller to take him home, and he would be saying mean, hurtful things, or spitting, or hitting. We’d get him in to the house and hold him until the storm passed and he was able to calm down and take a nap.

There were good moments, too. Towards the end of the season, the coaches used a pitching machine instead the tee. Most of the kids would go up and strike out since it was obviously their first time trying to hit a moving target. But I’ve been pitching to my son for years…the tee we had was too big so we just pitched it to him and he would hit it. So he would step up to the plate, ataxic and off-balance, like a drunk stumbling down the street. He would go through the motions to get his feet set, his hands around the bat that he would lift up to his shoulder, and sway back and forth waiting for the pitch to come. When it did, his soft, fluid motion would bring the bat in perfect contact with the ball and he would crush it, and the look on his face made every other thought disappear.

It was a balancing act…trying to give him an opportunity to do something fun with other kids but managing his seizures and minimizing the behavioral issues. There was no right answer. I felt like I was a terrible parent for putting him in the situation, and I felt equally terrible on those days where we’d skip the games and he would sit inside, isolated, lonely, and just as angry and having just as many seizures.

We’ve come a long way in the last year. My son is again playing teeball. His ataxia is better but still visible, but his behavior is much more under control. He’s cheering on the other batters and saying “Batter up!” and “Good job!” as the other team crossed the plate. There have not been any on-field seizures and, after our last game, he played at the park with his friends because we didn’t need to rush home because of seizures or to brace for the oncoming fatigue-induced anger.

My son doesn’t remember much about his first year of teeball, one of many holes that was caused by the seizures and the medicine. There are times when I wish I could forget last year, as well. But even though he doesn’t remember, I saw moments of joy and a sense of accomplishment as he hit the ball or ran to a base, and those are the memories that I choose to think of when I look back. If any memories from that time do come back to him, I hope that is what he remembers, too.

But if he never remembers last year, and if he only remembers his experiences this year, I’m grateful that we have this opportunity for him to play teeball again…for the first time.

April 28, 2016
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