time Archives - Epilepsy Dad

Strapped

Tapped.
Trapped.
Strapped.

We toured another school the other day. Between the brick-and-mortar school that failed to accommodate my son and the virtual school that seems to be trying but may not be able to accommodate him, it’s becoming more apparent that the Industrial Era education complex is not for children like my son.

The school we toured is about an hour away. That’s a long drive to contemplate making twice a day, five times a week. We’re already strapped for time with counseling and therapies and appointments and jobs and life. But if this school can accommodate our son in a way that helps him learn, grow, and feel successful, then we will figure it out.

The school is a private school. It costs as much as a house payment every month to attend. Although I am extremely grateful for my job and the salary and benefits it brings, we are still a one-income family. We have insurance through my job and, in Pennsylvania, secondary insurance for my son, but they don’t cover everything.

We’re also trying to save up for when we’re gone. We want to do what we can to set up our son for a comfortable life because we don’t know what the future holds. He may be self-sufficient, or he may need help, and we don’t want him to have to struggle.

And we’re trying to do these things and make these choices while also living our lives. We like to get out of the city. We like to go on vacation and give our son and our family experiences that help make everything not just a chore. These things all cost money, and there is never enough money to do them all comfortably.

Of course, that’s when we have enough energy to do those things. Energy is another resource that is in tight supply. It takes so much of it to get through the day-to-day, juggling everyday responsibilities in addition to those of having a child with special needs. One reason we liked escaping to Maine last year was that it helped replenish our tanks, but those reserves quickly get depleted when we return to normal life.

Time. Money. Energy. Every day involves making choices between them to hopefully provide the best life for our son and our family. But it feels like the longer we have to choose between them, the more strapped we get for each.

A Sense Of Time

I had a birthday recently. Getting older doesn’t generally bother me but, this time, my birthday felt different. This time, my birthday came with the realization that, realistically, I’m past the mid-point of my life. It made me feel like I was running out of time.

I’m running out of time to spend with my family.

I want to spend as much time as I can with my family. I want to look back on my life and not think that I worked too much, or was on the computer too much, or was on my phone too much. I want to look back on my life and know that I was a present father and husband. I want to know that I went to all the baseball games and performances and that my wife and I had date nights. I want to know that I was there when my family needed me.

There are so many obligations. There are so many distractions. There are so many demands on my time. My birthday made me wonder if I was making the right choices with how I spend my time.

I’m running out of time to prepare my son for the future.

Epilepsy through such a curveball at my son’s development, both intellectually and socially. It set him back a few years, and the gap is widening between him and his peers.

I worry that there will not be enough time to prepare my son for the world. I worry about what will happen to him after I am gone. But sometimes, I worry too much about preparing him for the future that I forget to let him be a kid. My birthday made me wonder if there was a way to help him develop and grow while still giving him the childhood he needs and deserves.

I’m running out of time to prepare the future for my son.

I also feel such a sense of responsibility to prepare the future for my son. We don’t know what his life will look like after we’re gone. We don’t know if the seizures will ever be under control. We don’t know if he’ll be able to support himself, or hold a job, or have a family.

I used to think only about having enough money for a comfortable retirement, but now I think about how I can best secure a comfortable future for my son. There is less time to do that now, and focusing on the future takes away from the present and spending time with my family. My birthday made me wonder if I was making the right choices now to protect my son in the future.

There is still time.

Although it originally felt like a sense of urgency, what my birthday actually gave me was a sense of time and the importance of it. It made me question my relationship with the future and the present and ask myself if I am spending my time in each way that I should. It made me realize that I often live at the extremes, ignoring either the present or the future, instead of finding the healthy balance between the two.

I’m not sure what I’ll do with the gift, but I’m hopeful that I will make the most of it. I suppose we’ll have to see what happens.

In time.

Enjoy yourself. It’s later than you think. ~Chinese proverb

The Illusion Of Time

It’s 4 in the morning and I’m sitting on the couch across from the hospital bed where my son is sleeping. Sleeping, finally, after having a cluster of seizures. The first one happened while I was lying in bed next to him. A quiet grunt announced the oncoming episode; a sound that would otherwise have gone unnoticed except for my newly acquired hyperaware sleep where I listen for any sound out of the ordinary.

The first seizure lasted under a minute, followed by another, longer one. They repeated for the next two hours, various lengths with varying breaks for sleep in between. As each seizure started, I would focus on the digital screen showing an analog-style clock affixed to the wall trying to quickly find the thin seconds hand on its journey around the face of the display. As the seizure ended, I’d groggily make a mental note of the duration to pass along to the nurse. Just beyond, a team of doctors looked at the data.

Robotic, calm, precise…all the things I wasn’t when he had his first seizure.

If you’ve never seen a seizure, especially happening to your child, the first few always stretch time. For me, there was a phase of not knowing what was happening. I thought he was playing a game until he wouldn’t respond for what felt like an eternity. Then the frantic 911 call, the waiting for the ambulance, the not knowing the different phases of a seizure and when it began and when, or if, it would end. When the paramedics and later the doctor asked us how long the seizure lasted, we didn’t know. We had no reference. Our initial estimate was 10 minutes, but time in those circumstances, time is stretched and bent and irrelevant to a panicking parent. We didn’t know we were supposed to know how long they lasted, and so we made an impossible guess.

Einstein said the “Time is an illusion”, that the passage of time is a psychological human condition, not a property of the universe. I don’t know about the universe. But as a parent, I know that sometimes time moves way too fast and, at other times like in the middle of a seizure or when you are waiting for an answer as to why this is happening at all, it moves too goddamn slow.