lifestyle Archives - Page 22 of 32

Why Graduating Kindergarten Is A Big Deal

Last week, my son finished kindergarten.

A few years ago, I would have let that moment slip by. Honestly, moving on to first grade is pretty automatic and it would have been a normal right-of-passage, like losing a tooth. My wife would have handled the celebration, and I would have smiled and congratulated him while making snarky comments like “it’s just kindergarten” to my wife as she unsuccessfully tried to show me that every moment is important.

When that day finally came, I didn’t need my wife’s convincing. When I walked in the door after work, he ran to me and told me in a big, proud voice, “I finished kindergarten! I’m in first grade now!”. My eyes welled up with tears as I knelt to hug him and told him how proud I was of him for working so hard. “You did it, buddy”, I told him over and over as he squeezed his hug tighter and tighter.

He looked proud of himself, too. Rightfully so. He missed most of preschool due to seizures, side effects, and hospital stays. In the weeks leading up to the start of kindergarten, we weren’t even sure he would be able to go at all. His seizures were still not under control, we were still adjusting medicines, he was still adjusting to the ketogenic diet, and his behavior and attention issues were at their height. Dropping him in to a public school kindergarten with 28 other kids seemed like a terrible idea and one that could do more harm than good.

But we scrambled to get him registered, and to see what services would be available to help him. Technically, none, we learned. I felt like his epilepsy and related complications had come at an inconvenient time, too late for us to get him established as a special needs student and, therefore, not eligible for assistance. I remember thinking “Well, I’d prefer for him to not have epilepsy at all, but I’m sorry that he didn’t get out of the hospital sooner so we could fill out the paperwork.”

It was an unbelievably frustrating process, but we did get him registered and, although the special needs paperwork wasn’t completed, the principal assigned a school resource to act as an aide to my son for the few hours a day that he was physically capable of being there. Until the aide started, my wife was allowed to sit in the classroom with my son, so we had a plan for him to start kindergarten on the first day of school, although with a later start time to allow him to have enough rest to make it through the morning.

As a sign of things to come, on the first day of school, my son woke up early, dressed, at breakfast, and walked to school to start at the same time as his classmates. Of course, he had a seizure getting ready, but he didn’t let that stop him and he found the strength to push through.

He did that all year long.

When his body or mind was fatigued, when he couldn’t find words, or string together a simple sequence of events. When he couldn’t focus on a single task, or stop his body from shaking, or keep his anger and emotions under control. When he felt embarrassed about his special diet and watched the other kids eat whatever they wanted. When he missed chunks of time for therapy, or hospital visits. When he’d go home, exhausted, and sleep for hours, and then wake up and finish his homework and read and just try to keep up. Through all of that, my son woke up, almost every day, ready to put himself through it again.

My son had to work really hard to get to that day, and it was a really, really big deal.

I couldn’t be more proud.

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.