Tag: seizures

Paying The Toll

We were coming off a good weekend. We celebrated my wife’s birthday on Saturday, and we ended Memorial Day visiting friends, having a swim lesson, and staying up a little later to see part of the first game of the hockey finals. We put my son to bed tired but happy.

Just after midnight, the first seizure came. I heard the sound come from my son’s room a second or two before the sound came through the speaker of his monitor. By the time I got to him, it had passed. He was sitting up in his bed disoriented, so I helped him lay back down and waited for him to fall back to sleep.

The next seizure came a few hours later. The next one an hour after that. And the next one an hour after that. It was like aftershocks after an earthquake, except each of them was just as intense as the one before it. He had at least four that I saw, but we learned during the overnight EEGs that we don’t see them all.

When he does anything that exerts an effort mentally or physically, a nap-time seizure or a collection of seizures during the night is likely to follow. We bowled for an hour and he had a seizure during his nap. After a morning baseball game, a seizure. Even though he only goes to school for a few hours, he’ll often have a seizure during his nap.

We tried to explain it to his school. It’s not just about what he can handle in the moment. The exertion carries beyond the activity itself. It show’s up as more seizures, which set him up to be more tired the next day. That lowers his seizure threshold for the next day, too, making him more likely to have seizures or requiring him to spend more energy regulating his emotions or attention. It’s downward spiral that ends with the husk of a boy too tired to function.

It feels like the universe collects a toll from my son based on how much he gets to actually live his life. It imposes a penalty to knock him back down and remind him of his limitations when he tries to exceed them. Someone with uncontrolled seizures shouldn’t play baseball. Seizures. Someone with uncontrolled seizures shouldn’t be progressing in school. Seizures. Someone with uncontrolled seizures shouldn’t be going to the skate park, or an amusement park, or a hockey game. Seizures.

Every time it happens, I question whether we did too much. But I gave up wondering if we should be doing anything at all, because that’s having no life. That’s letting epilepsy win. That’s not giving my son the life and the world that he deserves. So we’re careful and we’re calculated in deciding what to do and how much to do. We do our best to protect our son but let him be part of the world. We introduce as much downtime as possible so that we can distrupt his pattern of exhaustion and let him do the things he loves.

The universe seems committed to collecting its toll, but we’re doing everything we can to minimize how much my son has to pay. Because we’re going to keep on living.

A Childhood In The Clouds

I wonder how my son is going to remember his childhood. Sometimes, I wonder if he is going to remember it.

My son and I watched a Philadelphia Eagles game and we saw a player that my son had met at the hospital. I asked if he remembered meeting him and he said that he didn’t. We met the player almost two years, so at first, I chalked it up to my son being too young to remember. But he was also in the hospital because he was having more seizures and because we needed to adjust his medication.

Like other medicines, epilepsy medications have a long list of side effects. But medicine that controls seizures targets the source of those seizures, the brain. As a result, the side effects show up in those areas that the brain controls, which is everywhere. We have sees these side effects alter his mood and behavior and impact his motor control. As he gets older, we’re also seeing how much they affect his ability to learn and his memory. Those side effects were likely there all along, hidden beneath the surface. But now that those skills are being tested, the latent effects are being revealed.

We’ve passed the three year mark of my son taking medicine for his seizures. Three years of my son’s brain in a constant fog. Three years of struggling to form solid shapes around thoughts and ideas. Three years of a childhood spent in the clouds.

Three years of exerting all his energy to focus on one task at a time. Three years of that focus sapping all his energy. Three years of wondering if there is enough energy or will left inside of him to enjoy an experience.

The more we explore, the more gaps we find. Milestone events never happened. People erased from existence. It’s impossible to tell whether the failure is storing the memory or recalling it. The result is the same, though. A void where a childhood should be.

My wife and I repeat stories of our adventures to him, and we show him the albums of pictures we’ve taken. I’m hoping by continuing to expose him to those memories that he will have something to remember. I don’t know if it will be because we’re unlocking old memories or creating new ones through our stories. I’m hoping his brain doesn’t know the difference. I’m hoping that when he looks back on this time in his life, he’ll have something to find.

Endurance

My son just turned 8 years old. It’s been amazing to watch the changes in him over the last few years. He’s reading more on his own. He put together a 500-piece Lego set by himself. He’s doing more things by himself that he used to need our help with. This stage of life and of development has continued to surprise me.

Many things have not changed, though, too. He’s still having seizures in the morning. He’s still juggling medications and side effects. He’s still on the strict ketogenic diet, which means he still can’t eat what he wants. He still gets constipated. He still feels different. He is still having a hard time making it through the week and sometimes through a school day.

We’ve been on this part of our journey for more than three years. More than two years on the diet. More than ten medications. Hundreds of doctors appointments, tests, and therapy sessions. We’ve seen countless seizures, and they keep coming with no end in sight.

Earlier this year, I read [easyazon_link identifier=”0465062881″ locale=”US” tag=”epilepsydad-20″]Endurance[/easyazon_link] about Ernest Shackleton’s journey to Antartica. It’s an incredible tale of a failed overland expedition to the content. The title of the book was taken as much from what the explorers went through as it was from the name of their ship. They survived the loss of the Endurance, treacherous conditions, and a lack of food in an unforgiving part of the world. Along the way, groups were left behind to establish camps while others continued the search for help. Imagine the feeling of watching your best chance of survival disappearing in the distance, hoping they will return.

I called to the other men that the sky was clearing, and then a moment later I realized that what I had seen was not a rift in the clouds but the white crest of an enormous wave. ~Ernest Shackleton

Some days I feel like Shackleton, pushing through, fighting for my son, stopping at nothing until I can save him. We’re trying to function, to get up every day, to go to work, to try to live a normal existence. Because we have to. Because there is no alternative, even under the siege of enormous waves. Because, like Shackleton believed, there is too much at stake.

Other days, I feel like the men he left behind. Stranded on an island, waiting, and hoping that someday we will be rescued. Every day, they woke up, walked down to the shoreline, looking for a ship. For months, that ship never came. Like them, we’re afraid. Every day, we wake up and look to see if we will be rescued. Instead, we watch our son lose control of his body. Every day, we see how hard he fights. Every day, for three years, with no end in sight.

Most days, I fluctuate, rising and falling like the cold waves crashing on to the frozen shore. I am not brave enough or strong enough to face every day like Shackleton. It tears me up to see what is happening to my son. To see him struggle every day in so many ways. It strips away my courage and leaves me wanting to be rescued. But the unbounded love I have for my son and my family forces me to soldier on, to fight for everything we get, and to not let epilepsy take more than it has.

Eventually, Shackleton’s journey came to an end. After more than a year of impossible challenges, Shackleton and his team found help. They went back and rescued the rest of their men. One day, those men that were left stranded make their way to the shore and looked out on to the horizon to see their captain returning for them. To see their lives returning to them.

I can only imagine the glory of that feeling. We are standing rocks, piled together on the shore looking in the expanse before us. I long for the day when I will look out on to the horizon and see a different life than the one we have been leading. A life where my son doesn’t have seizures. A life where he doesn’t struggle to do what so many others take for granted. A life where he can be free.