epilepsy dad

  • Almost

    Almost

    He comes home on Sunday.

    I’ve been counting down in a way I didn’t expect to. Not dramatically, just the quiet awareness of the days getting smaller. Six weeks is a long time. Longer than I thought it would feel.

    I know why he went. He needed time with his mom, and I wanted him to have it. I gave him that space without reservation. We talked every day. I want him to have a good relationship with her. That matters.

    The technology helped more than I expected. We played Fortnite and Rocket League online, just like we do when he’s upstairs. The distance was real, but it wasn’t total, and I’m grateful for that.

    But I’ve been ready for him to come home for a while now.

    People will tell you that you’re not supposed to be best friends with your kid. You’re the parent, not the friend. There’s wisdom in that. But he’s the person I most look forward to seeing. The person I most look forward to talking to, joking with, just being in the same space with.

    I miss knowing he’s in the house. That I can go upstairs and check on him. That we can go outside and play basketball when the afternoon opens up.

    I miss Spaghetti Sunday, when he fills his plate, eats, and announces, “I’m still hungry,” before heading back for more. He was on keto for so long that seconds weren’t something he could have. Now he can, and he does it like it’s the best thing in the world. It kind of is.

    I miss him complaining about chicken for dinner, or anything that isn’t spaghetti on Sundays, quesadillas on Taco Tuesday, or pizza on Fridays. We haven’t named that day yet.

    I miss him asking me every morning how I slept and answering “hard” when I ask him back. The text on Saturday morning, while I’m at tennis, the first one I get, is sent the moment he wakes up.

    I miss the shriek from his room when he’s gaming with his friends.

    There’s a Dungeon Crawler Carl graphic novel sitting on my desk that I picked up for him. We have tickets to the new Spider-Man movie on Thursday, in 3D, which he loves. The dogs don’t know what’s coming.

    I know the harder parts of parenting come back with him too. The routines, the school year starting, the decisions that don’t stop just because it’s summer. I’m not pretending the six weeks were only loss. The house found its own quiet shape. I got things done. I had time I don’t usually have.

    But the quiet has a limit. Six weeks is past it.

    He comes home on Sunday. We’ll make spaghetti. He’ll fill his plate, eat, and announce, “I’m still hungry,” before heading back for more. He’ll stay up late on Arizona time. I’ll go to bed before him. And I’ll wake up in the morning knowing he’s there.

    That’s the part I’ve missed most. Not any one thing. Just knowing he’s in the house.

    This is home. He just makes it that.

  • The Empty Basket

    The Empty Basket

    I’ve been listening to a book called Mattering. One of the early chapters is about the weight that comes from someone depending on you, and what happens when that weight disappears. The author tells the story of a woman who cared for her elderly mother for years. When her mother passed, she didn’t just grieve the loss. She grieved something more specific. The absence of being needed in that particular way, every day, by someone who depended on her for it.

    I recognized something in that. Not the same loss, but the same shape.

    There’s a cabinet near our microwave where we keep the medications. The bottom shelf has the shared stuff, Advil, the things anyone in the house might reach for. The middle shelf has a basket with my son’s medications. The top shelf has a basket with mine.

    He’s been gone for weeks now. I sent all his medications with him, so the middle-shelf basket just sits there. Filling that basket every Sunday was never just a task. It was something he needed from me, something that kept him safe, something only I did for him. Now there’s nothing on that shelf that needs anything from me. I see it every Sunday morning when I do my own meds, and the absence is specific. It isn’t that I miss the task. I miss being the person the task depended on.

    Grocery shopping used to be something we did together. Some of it was just being together, talking, joking around. But some of it was him needing me there in a real way. Reading labels, comparing prices, figuring out what to make with what was available. He needed me to walk him through that, to be the one who knew how, to be necessary in that specific aisle-by-aisle way.

    Now I put my AirPods in and listen to a book. I shop. There’s no one in the cart who needs to learn anything from me today. No one who needs me there at all.

    It’s not that I miss the activity. I miss being needed for it.

    I think about what this means in the longer term, and I don’t have a clear answer. Most parents know the general shape of this. Kids grow up, they move out, the day-to-day reliance fades on a predictable timeline that everyone more or less expects, and there’s a kind of comfort in knowing the shape even when it’s hard. I don’t know what that timeline looks like for us. It might not be him moving out in the traditional sense, unless that eventually means a supportive living situation. With the separation, it might mean longer stretches like this one, several weeks now, six months somewhere down the road. Or he might end up staying with me, and this version of being needed becomes simply my life, indefinitely.

    I don’t know which of those it is yet. Maybe once we do, this will feel less stark. Less noticeable.

    For now, there’s a basket on a shelf that doesn’t need me, and a quiet car on the way home from the grocery store, and the particular grief of not being the person someone depends on, even for a little while.

  • I Wrote a Thing

    I Wrote a Thing

    I typed the last word sometime in the spring. I closed the laptop and sat there for a minute.

    That was it. Twelve years. Fifty-nine chapters. Done.

    I didn’t know what to do next.

    (more…)
  • Pick a Hand

    Pick a Hand

    I was at my desk when he walked in.

    He had something behind his back. He told me to pick a hand, which is something we’ve done forever — the other person always swaps the item to the other hand at the last second, holds it out, says “oh well.” I stopped what I was doing and turned toward him in my chair.

    I knew what this was.

    A few weeks earlier he had told me he had an idea for Father’s Day. I didn’t push for details, just told him I was excited. Then he told me he had found something and was going to order it. He did the research himself, found the right one, placed the order, entered his card information and shipping address. Before he confirmed it he checked with my goddaughter, who gave him the green light. When the package arrived he took it to his room to look it over.

    He had saved his allowance for this. He cleaned out the car for a little extra. He called his grandma and she chipped in. He put all of it together, did all of it himself, and then waited.

    Back in the office, I picked a hand. Wrong one. He grinned and swapped it to the other. I picked again and he handed it over with a huge smile.

    It was a Steven Stamkos hoodie. Tampa Bay Lightning. Number 91. Stamkos has been on Nashville for a few years now, traded away from the team I’ve followed my whole life, but he was the first player my son really remembered as my favorite. When there’s a Nashville game on, we’ll tune in and check on him. We still cheer for Stamkos.

    He knew exactly what he was picking.

    He couldn’t hold onto it anymore, he told me later. He had been going to burst. That’s why he gave it to me before he left for Arizona — he couldn’t wait another three weeks for Father’s Day to actually arrive.

    I made a big deal of it. How soft it was. How thoughtful.

    On Father’s Day I wore it on our FaceTime call. His face lit up when he saw it. He was so happy, so proud of himself. I told him again how much I loved it, how much it meant. He soaked it in.

    He’s been doing more things like this lately. Figuring out how to make something happen, doing the steps, seeing it through. Not asking me to do it for him. Not asking for money and handing off the rest. All of it, start to finish, himself.

    I don’t want to make too much of a hoodie. But it wasn’t really about the hoodie.

    It was a kid who had an idea and saw it through. Who saved up and asked for help in the right places and checked before he ordered and waited for the package and held onto the secret as long as he could and then walked into my office and told me to pick a hand.

    He’s becoming someone who does things like that.

    I’m paying attention.

  • The Long Way

    The Long Way

    So much of my life runs on routine.

    On weekday mornings I wake up early without an alarm. I let the dogs out and feed them, then head to the basement to work out. After, I make coffee and go upstairs to write, the dogs settling into a chair or the couch in the office while I play my writing playlist.

    After writing I shower and get dressed, then go back downstairs to pack lunches, swap yesterday’s pill container for today’s, and refresh my coffee before starting my workday.

    How the night went determines when I wake my son. I go into his room, dogs close behind, and we sit on his bed. The dogs start licking his face. I make silly jokes. He pretends to still be asleep even though I can see the corner of his mouth starting to curl. Then he wakes up.

    I work while he has breakfast and gets dressed. We get a song or two in on the way to school, then I head to the office. I leave in time to pick him up and finish my workday from home, then dogs, dinner, cleanup, bed.

    Sundays are for medication, pills laid out on a paper towel while I drink my coffee. Spaghetti Sundays. Taco Tuesdays, though it’s usually quesadillas.

    On weekends I play tennis. When I’m done, I take a longer route home than the one I take to get there, specifically so I can stop by Wawa for a soda. Soda was always a big treat for him when he was on keto, and it’s a concession I still make even though he’s on a regular diet now. Wawa is special because he can get a larger size and mix flavors in the machine, usually some combination of Dr. Pepper varieties.

    I played tennis today. I found myself taking the long way home out of habit. It wasn’t until I saw the Wawa sign that I remembered he isn’t home. He’s visiting his mother out west.

    There was no reason to take the long way. No one waiting for a soda.

    (more…)

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I’m Dave. I write about raising a son with refractory epilepsy.
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