Tag: vns

The Night Watch

Every night before he goes to bed, my son takes a handful of pills.

The pills are the last line of defense that my son has against the unrelenting seizures that constantly lurk on the horizon. Especially at night, when his brain slows down to recuperate from the day, my son’s brain isn’t strong enough to defend itself against attack.

His medication is meant to strengthen his defenses so that his brain can rest. They are the guards on the parapet defending the residents inside the walls throughout the night. But the gaps in my son’s wall are too wide for the guards to cover. It’s not a question of whether a seizure will break through; it’s how many. It’s how much damage will the attackers do before the sun rises.

We’ve tried to boost his defenses. New medications. The ketogenic diet. VNS surgery. But none of them have prevented the nightly raids from exacting their toll on his developing brain. Even combined, they are no match for the electrical storm the flows wildly across the neurons and floods the cells.

It could be worse. It has been worse. Before we knew what this was, the flood nearly took my son. The uncontrolled pulses flowed through the gaps in his natural defenses and eventually breached them entirely, leaving his body frozen and his mind disconnected. We managed to beat back the invader and rebuild. We strengthened the walls. We bolstered the night watch. But our seizure calendar records the history of attacks, painting cells with yellow markers revealing every defeat in long ribbons of sequentially colored squares.

Every night before he goes to bed, my son takes a handful of pills because there is nothing else to do. We stick to our routine because it is better than the alternative. His pills, his diet, and his VNS play their part. But as he drifts off to sleep, I turn on the monitor and take my post watching over him, too. Because it’s my job on the night watch to be there when his defenses ultimately fail, to comfort him after the attack, and to help him rebuild the next day before we do it all over again.

 

Some Other Beginning’s End

It’s already February.

It feels like we skipped January, which I wouldn’t have minded.

January sets the tone for the year. We treat it as a fresh start. We make resolutions to change things about ourselves that we want to improve. And then we endeavor to build up enough momentum to carry those changes through the year and through our lives.

If we’re still exercising in February, or eating better, or not drinking, then there is a better chance that we’ll be doing the same in March and in December. But, inevitably, by the second month of the year, the gym is starting to thin out. There is a pint or two of ice cream in the freezer and a box of wine on the counter.

I was hoping for a better January. My son had VNS surgery in December. While I knew it would take months or a year to see if it would work, January felt so much worse. We often counted the time between seizures in hours, not days. We were reminded every five minutes when the VNS went off and tickled my son’s throat and changed his voice that we were still at war with a relentless enemy that takes and takes from him, leaving him tired and insecure and behind.

January didn’t even give us that first, hopeful week. It strapped us to the couch, shoved a ladle full of ice cream into our mouth and poured the box of wine down our throat on the first day. “Just so you don’t get any ideas that this year is going to be different or better, ” January said, smoking a cigarette with its foot on my chest.

Seneca said, “every new beginning comes from some other beginning’s end.” I’m trying to find a new beginning in all of this. But to do that, I need to find an end, but there never seems to be one. We turn the page of the month, but it’s the same calendar with the same theme that has been hanging on the wall for the last five years.

The days of the month are color-coded to capture those when my son had a seizure. January is covered with the little yellow squares of activity. February isn’t starting out any better. It’s hard to look at the calendar and imagine that it is ever going to end or that we’re going to get that new beginning we’ve been hoping for.

But Seneca also said, “Begin at once to live, and count each separate day as a separate life.” Maybe I’m thinking too “big picture”. I’m trying to apply “before” and “after” to months and years instead of to each day. Each day when my son has a seizure ends and a new day begins without one. Each day has the potential to be the day that he doesn’t have a seizure. Each day has the potential to be the one when things begin to get better.

If it turns out to not be that day, I’ll try to remember that that day will end, too. And when it does, a new one will begin. I’ll try, but it won’t be easy. Because even though I’m trying to be grateful for each day and to see its potential, I’m still longing for the day when things finally get better for my son. Because even if it’s not possible, that’s the new beginning I still really want. But for that to happen, these relentless seizures and side effects need to end.

What Can’t Be Undone

The suggestion to implant a VNS was made by our neurologist years ago. But there were still options to try so we held off. Unfortunately, CBD was not our miracle and other medications didn’t help. The seizures kept coming and we ran out of things to try.

When our neurologist brought up the VNS again, I felt the overwhelming weight of the decision squeezing the air out of me. If it even has the potential to improve his quality of life, she asked, shouldn’t we try it? Of course, she was right, but that knowledge didn’t help me breathe.

Neither did having an amazing surgeon in one of the best children’s hospitals in the country. Neither did the love and support of friends who would try to reassure me about how safe surgery and anesthesia are. Neither did my wife who held everything together when I couldn’t.

It wasn’t the mechanics of the surgery that occupied my thoughts. It was the idea of cutting into my little boy. It was the permanence of it all. It was the thing that can’t be undone.

We can wean off a medication that doesn’t work. We can stop the ketogenic diet. If years from now his seizures miraculously go away, we could stop everything and pretend that all the hard things about his childhood didn’t happen. There would be no signs, no trace. I could live in denial about how traumatized I was by this experience.

But the surgery forced me to confront the fact that these things aren’t going away. That the magical, unburdened life I wanted for my son is not going to materialize. That I can’t fix this or make it go away. That this is real, and that the future for him will include challenges brought on by his condition. That I’ve somehow failed him.

From the time the decision was made to the time they wheeled him away hopped up on “giggle juice”, I pushed my feelings down. I was practical but emotionless. I showed up for the appointments and answered the questions as he was prepped for surgery, but I wasn’t really there. I couldn’t be. I had to push it all down just to appear strong enough to make it through.

Even after his surgery was over, I had a hard time being present and acknowledging what had happened. I had a hard time looking at his scars. They were bigger than I thought they would be. Instead of small ones hidden by clothes, they’re long and visible. I looked away. I caught a glimpse of the device itself, raised under the skin and I looked away. It’s more than just being squeamish, it’s a spotlight of reality shining into my eyes and blinding me.

I worry that he’ll think I can’t look at him. I worry that he’ll feel like he did something wrong or that there is something wrong with him that is causing this reaction from me. I’m worried that I can’t get over my own hang-ups and be there for him when he needs me.

I tried to explain to him the feelings I was having but he didn’t understand. I didn’t, either, until I started to unpack them. But I still don’t know what to do with them. I want my acceptance to turn the spotlight that was blinding me into a beacon that brings me to him. But instead, it feels like the light has turned off. It’s not repelling me but it’s also not drawing me in. Instead, I’m left in the darkness trying to find my way.

But I can hear his voice. And I hear my wife’s voice. They’re calling me. And so I’m pushing through the blackness, the emptiness, to find my way back to them. It’s scary and impossibly hard. But I can hear them and they need me. I can hear them, and I don’t feel alone.

I’m on my way.