lifestyle Archives - Page 28 of 38

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

Always Running

Our new home city has a notable kite-flying history, and last weekend we went to the Philadelphia Kite Festival. Separated by only a few miles (and two hundred and fifty years) from where the festival was held, Benjamin Franklin performed his famous electricity experiment, as the story goes, with a kite, string, and a key.

Inspired by historical events, we forewent the store-bought kites and headed to the tent where visitors could decorate a simple paper kite. My son sat at one of the long, wooden tables, in front of a blank kite. A volunteer slid over, placing weights on the corners of the kite and handed my son a white, plastic basket of markers.

Sticking with his go-to move, my son wrote his name in the center of the kite. Then he rotated through the markers and adorned his kite with lines and shapes and squiggles in every color. Only on one side, though. The volunteer explained that the side my son was decorating was the side that he would see when his kite was in the air. When she offered to flip the kite over so that he could draw on the other side, he told her that he was done.

The volunteer took his kite and put on the finishing touches: a few folds and tape to create airfoils and string from wing to wing. As she did, she leaned over the table and gave my son a lesson in flying a kite. “Keep the wind at your back,” she said, brushing his hair from back to front with her weathered hands. “Otherwise, it will fall to the ground.” He stood, listening intently, as if he were a pilot about to take the controls of an airplane for the first time.

After a few more pointers, my son grabbed his kite and headed to the field. He placed his kite gently on the ground and unrolled a few feet of string. It was not a particularly windy day and most of the kites on the field sat limp on the ground. The breeze was barely enough to move the blades of grass and cause an occasionally flutter of the paper that comprised our hand-crafted kite.

“Go!” I told him. He held on to his roll of string and started to run. After a few feet, his kite lifted in to the air. He would turn to look at his kite high in the air but, as he did, it would start to sink slowly towards the earth below, so he would turn again and race across the field and his kite would climb back in to the sky.

My son and I took turns over the next half hour running across the field keeping his kite in the air before I called for a break. He stopped running, and his kite fell to the ground.

We sat on a bench near the river, watching other people fly their kites, and I thought about how we have to keep running to keep everything up in the air. We are constantly running, adjusting and managing medicine, measuring everything he eats for his diet and cooking meals, making sure he’s not too tired, hunting for other triggers, and always observant, watching for seizures. We’re running and trying to normalize his day for school, and racing between appointments, and trying to give him as normal a life as possible. If we ever stop running, everything, like his kite, will come crashing back to earth.

I wish so much for him to feel the wind at his back…to watch his kite fly in the air without the need to run so that he can lay back in the grass, watching his kite in the air, and simply enjoy the sun. My son didn’t complain because there was no wind or because he had to run across the field to keep his kite in the air. He doesn’t often complain about his seizures, or his medicine, or his diet. Through everything, my son has been a trooper.

He runs because he doesn’t know or remember any other life.

We run because he is our son, and we would do anything for him.

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.