You’ve Got A Friend

A few weeks ago, we had one of my son’s friends from his new school and his family over for dinner.

My son goes to a school for unique learners. He started there last year, and we uprooted from the city to move closer to the school. It was a big risk at the time, but it paid off.

It’s the first time we felt like he was in a place that understood him and was putting in the work to teach him. It’s the first time since our epilepsy journey started that he has been able to attend a full school day. My son is happy, learning, and surrounded by kids who are just like him; each one of those students has unique challenges and reasons for being there.

My son and his friend often FaceTime after school and play Minecraft. I’ll hear them talking and laughing from the basement, and I’ll exchange greetings with his friend when he hears me checking in. When his friend was out of school for a few days, my son would check in with him to see how he was doing. When his friend came over for dinner, the first thing he said when he got out of the car was that he needed to check on my son to make sure he was okay because my son had a rare daytime seizure the previous day.

The boys played for hours. They played video games and had Nerf battles in the basement. We heard the same joking and laughing in person that we did when they were chatting on FaceTime. It was a wonderful sound to hear in person.

While the boys played in the basement, the adults stayed upstairs and talked, mixing time between crafting and food preparation. We had a lot in common. Both families were dealing with a severe medical condition, as well as the complexities that come with it. Both boys struggled in school, and both families struggled to find a place that would work for them. There were doctors’ appointments and extended absences from school that made it hard for them to build and maintain friendships. But both families found a place where we felt the boys could learn and grow and where they found each other and other friends just like them. Both families also have one more year before we go back to the negotiating table in order to continue at the school that has given our kids a chance to be seen and to learn.

Listening to them share their story also made me furious. Not just because families of children with special needs shouldn’t have to fight so hard or be abused by the system, but also because the way their family was treated was amplified because of their race. The things they were told about their son were shameful and terrible, even more so because the comments came from people who called themselves educators.

This is the reality for kids who don’t fit into the box. The system, every system, is designed for the majority. It’s more efficient when all the pieces look the same and can be treated the same way. When an “other” shows up, it slows down the machine. The system will try to make the “other” confirm if it can or discard it in order to return to “normal.”

In some cases, when the “other” proves resistant to being discarded and fights back, the system makes conditions intolerable until the “other” has no choice but to leave. We’ve experienced this ourselves, and we’ve seen it play out too many times with the people around us, especially those on a similar path. It plays out the same way in the bureaucracy of the local school system as it does on the national stage.

Navigating this world is hard and exhausting. It often feels lonely and isolating. It’s been a while since we talked to someone who understood our experience that deeply. It was cathartic to look across the table and see someone who knew what it was like. As terrible as the experiences have been, it was comforting not to feel alone.

Playing in the basement, it was also apparent that the boys didn’t feel alone, either.

Today Is Not Yesterday

I was recently in Colorado and had a chance to catch up with friends that I have known for more than ten years. We knew each other before I was married and before any of us had children. They’re also one of the few people who knew us before epilepsy.

We reminisced about the days when our lives were simpler and had much less responsibility. Adulting is hard. The weight of trying to focus on a career but still spend time with the kids, friends, and each other gets to be too much. We’re all exhausted and come home and want to do nothing but go to bed early.

Ten years ago, we thought it would all be possible. Ten years ago, we thought nothing would change. Now, we’re tired and depressed because we couldn’t maintain our lives from the past. So it made sense that we would be nostalgic for the time before we felt like we were failing.

But we’re not failing. As much as we thought we could, we weren’t supposed to keep things the same. We couldn’t just sprinkle on new stuff like kids or a more senior job. Our lives evolve and become something else. Today is not yesterday. It’s something new.

Instead of trying to fit my new life into the old one, I’ve tried to figure out what my life should look like now. Instead of focusing on what was important to me then, I’m trying to focus on what is important to me now and build my life around that.

But it’s hard to let go of the past, especially when there are days when the present seems impossible. Every seizure, every outburst, every time my son can’t remember what just happened…I just want to hop into a time machine and go back to before any of this happened.

I think that is what my brain is doing every time it compares today to yesterday. It’s trying to bring me back to the past. But it’s wasting energy. It’s swimming against the current instead of letting the current carry me forward. Worse, the past that it is trying to bring me back to isn’t real…it’s a distorted version made better by years of distance.

It’s not always easy to focus on the present. The present is hard. The present is real. But instead of using my energy to try to make my life what it was, I should be using it to make my life the best that it can be now. Because the present is where my life is. The present is where my family is. The present is where I am needed. The present is where I am supposed to be.

Nostalgia is a necessary thing, I believe, and a way for all of us to find peace in that which we have accomplished, or even failed to accomplish. At the same time, if nostalgia precipitates actions to return to that fabled, rosy-painted time, particularly in one who believes his life to be a failure, then it is an empty thing, doomed to produce nothing but frustration and an even greater sense of failure. ~R.A. Salvatore

The Sleepover

A few weeks ago, my wife and I spent our first night away together since my son was born. Individually, we’ve been away. I’ve gone on work trips, and my wife has gone to visit family. But we’ve never both been gone for the night and let someone else watch our son.

In some ways, it wasn’t practical. We don’t have family that lives near us, so leaving him at grandma’s house wasn’t an option. But there is also the reality that our son has seizures almost every night. Spending the night isn’t just about giving him a place to sleep. It’s an active task that involves monitoring him and responding to seizures.

Our son is never alone. Even sleeping in his bed, we have a camera pointing at him that I watch all night long. When he is in his room playing, we keep a cautious ear listening to what is going on. He receives individual attention at school, and his nanny is substituting for us when we aren’t there.

That level of involvement is not something that transfers well to someone unaccustomed to that level of care. It’s not something that lends itself to people lining up to take on the responsibility. It’s our every day, but it’s not theirs. I can imagine the conversation with the parents would go something like this:

As you know, our son has epilepsy. And it’s very likely that he’s going to have a seizure really early in the morning. Probably more than one. The seizures are likely going to wake and frighten your child. And you’ll need to help my son reorient to the world as he comes out of it and make sure he doesn’t fall out of the bed or try to walk around and fall down your stairs.

[silence]

If the seizure lasts too long, his rescue medicine is in his overnight bag. The good news is that we haven’t had to use it in a while. The bad news is the delivery mechanism.

[silence]

Also, you’ll need to make sure he doesn’t eat or drink anything we don’t send with him. He’s on a medical diet and if he eats anything else he could start having seizures.

[silence]

Oh, and don’t let him stay up too late. The more tired he is, the more likely his is to have seizures.

[silence]

His medicine is also in his bag. Make sure he takes all of his pills because if he misses any…you guessed it, more seizures.

[silence]

Other than that and, I guess, his depression and behavioral side effects of his medicine, I think you’re all set. Ok, goodnight!

[overwhelming silence]

I couldn’t burden someone with that responsibility because nothing could prepare them in one night for what has taken us years to adapt to. But I would also spend the night worrying and wondering. It wouldn’t have been a good night for anyone involved.

I really struggle with the idea that no one else can or will want to take care of our son. But at the same time, I find reasons why no one else should. They don’t know my son. We can’t prepare them for what it is like. What if something happened?

In the end, our nanny provided the perfect opportunity. She has been working with our son for over a year. She’s seen his seizures during his nap, and she’s helped him manage his behavior and emotions. We trust her to keep him safe. When she agreed to an overnight stay, it felt right.

Even though it was only one night, it opened my eyes to a new possibility. I’m not going to say that I still didn’t worry or wonder. But coming from a place where I didn’t think it would be possible at all, that first night was huge. It may not have addressed all my fears about the future, but it was a good first step.