Reality Always Wins

It’s easy to let denial take the lead. If we make it a day or a week without any seizures, it’s easy to let what is happening to my son fall to the back of my mind. There are moments when I let myself believe that we made it through it, that we figured it out and that the seizures are gone. Even if it’s just for a moment or an hour or a morning, I welcome the ignorant bliss that denial carries with it and pretend that this is not happening to my son.

The problem with denial, though, is that it doesn’t last forever.

epilepsy dad reality medicine prescription

Even without seizures, there are daily reminders that destroy the illusion. There are the pills that fill his tiny hands each morning and night that try to keep the seizures at bay. There is the diet that wreaks havoc on his body and takes away his freedom to enjoy the terribly delicious food that other kids take for granted. There are the behavior and attention issues that come with his condition and the side effects of his medication. There are the days when his balance is off, and when he falls a lot…a glance at his constantly bruised shins serve as his battle scars.

epilepsy dad bruised knees reality

It’s hard to be in denial when you’re confronted with the effects of epilepsy and seizures every day. Ignoring these effects or simply wishing that things were different isn’t enough to keep reality from bleeding in to the fantasy. No matter how hard I try to keep it afloat, this denial bubble always bursts and sends me crashing back to earth. My shins are bruised, too, from bending over to pick him up off the ground. My heart is bruised from watching this happen to my sweet, innocent, and special boy.

The problem with denial is that it doesn’t last forever.

Reality always wins.

The Long Walk Home

It was one of those nights when we had to decide between bringing him to his teeball practice or letting him skip it and rest. During the previous week, we had just gotten him back up to a functional dose of his medicine that once again helped stop his daytime seizures. But, after almost of week without them, the nighttime seizures returned. That day, he was spacey, and just “off”, which brought us to having to make this choice. Should we let him go play and do something that he hasn’t stopped talking about the entire week and risk him getting exhausted and more likely to have a seizure? Or should we keep him home, let him rest, and miss out on yet another activity?

Some nights, the decision is easier. If he had a day of seizures, or if his behavior was off, or if he had those big, puffy, purple circles under his eyes, he would stay home. Or, if he had a great day, and a great nap, it would be an easy choice to head to the field.

But on the in between nights, it’s hard to know what to do or what the repercussions might be. It’s like picking the mystery box in a game show. He could pep up and participate or he could lose complete focus and throw baseballs over the fence or somersault across the field.  We decided to open the mystery box and take our chances.

With being tired and being surrounded by a gaggle of excited peers, there were a few moments where we had to remind him to stay focused, but overall he did great. Until, that is, towards the end of practice where he had a great hit but was tagged out. He insisted that he was safe, but he was not (by a mile), and what should have been a short discussion turned in to a battle and a long walk home.

He cried the entire way. There was no reasoning, and no real comforting. He was tired, and done, and he just wanted to cry. So we let him. My wife pushed the stroller and I carried the teeball bag on my back. We would occasionally tell him that we loved him, and that we were sorry he was so sad, but we mostly let him cry, his head tucked in his hands or his baseball hat, as the tears rolled down his face.

When we got home, sniffling, he pulled himself out of the stroller, walked up the steps in to the house, and fell on the couch, crying as I helped him take off his shoes and jersey. I again reassured him, rubbing his head and kissing his forehead. As I started to stand, he calmed down and asked me to sit next to him, which I did.

We are not strangers to these long walks home. Last year, they were angrier, with hitting, and spitting, and mean, angry words coming from a crying five-year old. There were days where he would stick his feet in the wheels and laugh, or jump out of the stroller and try to run away. There were attempted trips to the museum or the park that would end before they began with us turning around after only a block or two from our home. It’s hard when the threat of a thunderstorm looms over every outing and every activity. But better the risk of a long walk home after doing something than never leaving the house.

 

 

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.

epilepsy philadelphia kite festival

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.

epilepsy philadephia kite festival

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.

epilepsy philly kite festival

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.

epilepsy philly kite festival