seizures Archives - Page 20 of 23

Learning To Be Brave From My 5-Year-Old With Epilepsy

A few weeks ago, before school started, my son was invited to a play date with other kids that were going to his new school. It was a good opportunity for us to meet the parents and for our son to meet his future classmates, and he was excited, even though he was having more seizures in the days prior. The day of the play date, he took a nap, woke up, and had another big seizure as he was getting dressed. With eyes full of tears, he said that he didn’t want to go anymore. I sat down on the floor next to him, held him and rubbed his back, and I asked him why. “Was it because of the seizure?” Initially, he said yes, but then he said that it was because he was nervous.

I let him know that it was okay to feel nervous, and that everyone gets nervous. I told him we didn’t have to go, or we could go and leave if the playground became too overwhelming. He cried for another minute, then he took a deep breath, put on a very stern face, and said out loud “I can do it.” He stood up and finished getting dressed. I checked in with him a few more times as we packed up his stroller, giving him probably too many opportunities to change his mind, but he was committed and we headed down the street to the park.

When we got to the park, he stayed by my wife and I initially, but he introduced himself to the other children. Eventually, one of them led him over to a tree that they were climbing, and my son eagerly joined in. He would climb the tree, maneuver to a branch, and drop down, Ninja Warrior-style.

On one of his climbs, he had a seizure. I saw his body stiffen and heard the tell-tale sound that accompanies his seizures, so I grabbed him and gently lowered him to the ground.

Once the seizure stopped, my mind started to race. Did the other kids see? Would they cast him aside? He wet his pants during the seizure. Did the other kids see that? Would they make fun of him? I questioned whether we should have brought him to the park at all and why I convinced him to put himself out in front of these new people when I knew he was already having a bad seizure week.

As he started to regain his composure, I asked my son if he was alright, and if he wanted to go home. “No,” he said. “I want to stay.” After a few more minutes, he stood back up. We dusted him off and did an inspection. His pants weren’t that wet and, aside from being a little hazy, we couldn’t see anything wrong. I asked what he wanted to do, thinking that running away and going home was the best option. “Climb the tree,” he said, as he walked back over to the tree. He grabbed a think branch with both hands, put his foot on the trunk, and pulled himself up.

I was never very brave, and I struggle to not project my fear on my son. I want so desperately to not poison his bravery with my overbearing desire to protect him from the world. I was different as a kid. I was awkward, and uncomfortable, and afraid. I know what it is like to be picked on for being different. The world can be a cruel place when you are different.

My son has epilepsy. He has seizures. That makes him different, too. There will be times where those differences are on full display, in front of his friends and his peers. I don’t want him to feel shame for who he is or because he has epilepsy, so my natural tendency is to hide. But he is teaching me that the right answer isn’t for me to encourage him to run away when he has a seizure or when he falls down. It’s my job as his dad to encourage him to put himself out there, even on those days when it’s hard. It’s my job to encourage him to get back in to that tree and climb.

One Year Of Seizures

This week marks the one year anniversary of my son’s first seizure. It’s not an anniversary that we are celebrating, obviously. But it has been long enough now that it’s hard to remember a time before seizures, but when I do…when I see a picture from the “before time”, when I talk to someone who hasn’t seen him since he started having seizures…it’s hard to make the connection between then and now.

His seizures started around the same time we moved from Colorado to Pennsylvania. The geographic difference makes it seem as if it was a different family back in Colorado. Their son didn’t have any seizures. The family in Pennsylvania, their son has seizures that are still not under control. The Colorado family was hockey and balance bikes. The Pennsylvania family’s son struggles to find his balance at all some days. The Colorado family had an infinite number of possible futures. The Pennsylvania family is mostly trying to manage day by day.

Most of the pictures of the Colorado family are gone from the shelves. They were too hard to look at. We didn’t see our son in those pictures, we saw another child living another life. After a year, that other life stopped being our present and started to become our past. This is our life now.

After a year, though, we’re slowly making new memories and celebrating new victories with new pictures that are making their ways in to frames and on to the empty shelves. This is our life now, and we’re finding ways to live it. We’re getting more help for him and for ourselves. We’re starting to go out to dinner, both as a family and on dates. We’re finding friends. We’re playing teeball. We’re going swimming. We’re going roller skating. We’re exploring our new home and making the days that we have count.

For all the differences…for how unconnected and disjointed that the two families seem to be, they do have one thing in common. The Colorado family had a tough kid that wouldn’t quit and that, somehow, kept a heart full of love through really difficult times. He lived fearlessly.

The Pennsylvania family’s kid is the same way.

Really, Who Needs Sleep Anyway?

If you follow me on Twitter (@epilepsy_dad) or Facebook, you might have seen this update recently:

Last night was first night in months where we didn’t get up even once. No seizures that we heard. No nightmares. No insomnia from the meds.

The bags under my eyes, however, are a telling sign that the status update represented an anomaly. Most nights, my wife and I sleep just on the edge of consciousness. The doors between our room and our son’s room are open so that we can hear any sound that he makes. My phone is on my nightstand with the baby monitor app running so we can hear and see him while he sleeps. We’re on watchful guard listening for a seizure, or for him calling out or crying because of a bad dream, or because he just doesn’t want to be alone.

On any given night, we might get up between 3 and 10 times, which means we only get a few hours of consecutive sleep at a time. It’s been like this for months. Our informal system has been that whichever one of us that is less asleep will get up, allowing the other to let their guard down a little more and drift a little deeper into sleep. It might only be a few minutes or it might be an hour, but either way, my body welcomes the break and release from constant tension.

When you have a child with epilepsy, especially if their seizures aren’t fully under control, a good night’s sleep is a luxury. Seizures don’t stay in a nice convenient box or stick to a schedule. They happen when they want to happen and, for many people including my son, that can be at night and during the lighter stages of sleep. The kicker is that those times are also when the body and mind desperately want to rest and recuperate and, since the seizures equate to an unrestful sleep, he’s left more tired. When he is overly tired, he’s more likely to have seizures during the day, as well.

I feel like I want to end every post with some variation of “epilepsy is more than just seizures” because it’s the overall theme of our journey so far. Seizures are a part of epilepsy, but there is so much more. There is a lack of sleep. There is a being on constant alert. There is dealing with the stigma, and the uncertainty, and the lack of understanding. There is the inability to explain any of it, to him, to ourselves, and to the outside world. There’s so much to living with epilepsy that it would take too long to list out even a fraction of the ways that it impacts our lives. But right now, my son has gone to bed, and it’s time for me to get whatever bits of sleep that I can. I will hope for another night without one, but I will still listen for his call…a call that I will always and forever answer.