Tag: seizures

Keeping The Door Open

If you believed the headlines, you might have thought that CBD was a miracle cure for epilepsy. After so many drugs failed to control my son’s seizures or burdened him with terrible side effects, I felt like we needed that miracle. But, in the end, CBD, like many other medicines, did not help to control his seizures.

This post isn’t about CBD. It isn’t about Keppra. It isn’t about dilantin, or topamax, or vimpat, or triliptol, or tegratol. It isn’t about any of them in particular but, in a way, it is about all of them. It’s about feeling like a door closes a bit more every time we stop another medication. There is still light on the other side because I can see it splashing through the opening onto the floor. But the beam is getting narrower. And no matter how I angle my head, I can’t actually see the source of the light. I have to trust that it is there.

I’m frustrated that another thing that has worked for others didn’t work for us. I hoped it would live up to the hype and that we would be one of the success stories. I want desperately for something to work for my son. As hopeful as I am that he will wake up one day seizure-free, I’m not greedy. I’d settle for a magic pill that would allow us to stop his other medication and free him from their side effects. A pill that would let him stop the ketogenic diet so that he could have a slice of pizza or a piece of candy.

The side effects. The ataxia. The attention. The unbalance. The learning difficulties. The feeling of being different. The loss of control of his mind and body. The lack of freedom. An uncertain future. I want that magic pill to take away these things, too.

But there is no magic pill. As every parent of a child with epilepsy knows, some things work for some people but not for others. We happen to be in the unlucky camp of people for whom most things don’t work at all.

The door hasn’t closed, though. I won’t let it. I jammed my foot between the door and the frame so that it can’t close. I’ve got one hand gripped on to the handle and the other with a firm grasp on the door, and I’m pulling as hard as I can.

I won’t let that door close.

There is too much at stake. When there is light, there is hope, and there is so much to be hopeful for.

I won’t let that door close.

If I have to, I’ll rip it right off its hinges.

Leading With Love

Sometimes I look at my son and I see a tall blade of grass, swaying in the breeze. His legs appears rooted on the ground, but his body moves and bends as if it is being pushed by an invisible force. Or a corn stalk that is too thin to support the ear that is is carrying, bobbing in no particular direction but down. It seems an exhausting tasks to constantly keep from falling over.

When he moves, I see a puppet whose strings sometimes get twisted. The extension of his limbs or the gate of his stride are not quite right, and he sometimes tumbles to the ground. We do our best to pull him up and untangle his knotted strings, but each time he falls, my heart aches.

I wonder if, when he does fall, when he’s lying on the ground, if that’s when he feels the most stable. Like in my younger days after I had too much to drink. When I wanted to lay on the bed and prayed for the world to stop spinning around me. My prayers were rarely answered, but at least I felt like there was nowhere further to fall. I could close my eyes and feel the world spread out below me and holding me so that my body could release all its tension. Only, he shouldn’t be old enough to know what that feels like.

When he falls to the ground, I get angy and frustrated and sad. I look at him as that blade of grass, or stalk of corn, or sailor, or puppet. I can’t help myself but wonder if he wants to stay down for an extra second to let his body not worry about balance. But when I do, when he looks at me, I worry that he will see those expressions on my face directed at him. That he’ll think that I am angry and frustrated at him, or that he’ll see me sad and think that it is because of him. It’s a heavy burden to think that you are the cause of such powerful emotions in another person. Of course, he’s not. My anger, my frustration, and my sadness are not because of him, but because of what is happening to him. But what else could he think when I look at him the way I do? He shouldn’t be old enough to know what that feels like, either.

The cruelest thing that epilepsy continues to do is to try to make my son feel less than he is. Less than an amazing boy. Less than the best son. Less than a gift. Less than a miracle. It feels as if it is using me to do its dirty work, to project those feelings on my son through my worry and frustration. I catch myself doing it, but usually after the message has been delivered. It’s a terrible feeling to worry about what your child thinks you think when you look at him. Because regardless of what is visible on the surface, hidden underneath is always love.

I wish my instict was to lead with love. I want so much for that to be what he sees when I’m looking at him instead of the temporary emotions caused by a symptom of his condition. I don’t want him to have to remember that I also love him, I want that to be where he goes first. Because the pain and sadness at what his condition is doing to him is amplified by that love. Because loving him is where I am, first and always.

By His Side

A noise stirred me from my sleep. Instinctively, I rolled to face the monitor. Even though it was on the dimmest setting, my eyes struggled to focus against the light of the screen. I closed one eye completely and squinted the other until I could make out the image. Then, another sound. That sound. The sound that still breaks the silence of the early morning. The sound that wakes me from my sleep and tells me that my son’s brain has lost control.

Some mornings, I watch the screen to see if my son can put himself back to sleep. But this morning, I could tell by the way the sound echoed through the halls that it was a bad seizure. I slid my body off the bed and felt the cold floor beneath my feet. Keeping one eye closed did little to help readjust to the darkness. I navigated my way through the kitchen on instinct until I reached his door. I felt for the handrail and made my way down the stairs. Halfway down, my eyes finally caught up to the rest of my body and I could make out the bottom of the stairs. I swung myself around the banister and landed at the foot of my son’s bed as he sat upright and started to cry.

I write a lot about these early morning hours. These are the hours when our unwelcome visitor makes its presence known. These are the hours of sounds, and seizures, and tears. Of scrambling down stairs and early morning comfort. The hours without sleep, when there is nothing to do but think about our lives…my son’s life.

I wonder if these trips to his room will ever end. I wonder if our house will ever be quiet again in the early morning, or if I will ever be able to let my guard down. I wonder if this is his life, destined to call out into the night for the rest of his days. I try not to think about who will answer that call when I am gone. On that night, I was there, like I was on countless other nights. I did answer the call, like I will for as long as I am able.

I crawled into bed with him and sat next to him. I rubbed his back and told him that he was okay, that everything was going to be okay. It didn’t feel like a lie when I said it, but it didn’t quite feel like the truth, either. After a few minutes, he started to calm down. I helped him lay back down and covered him with his favorite green blanket. He stuck his fingers in his mouth as he closed his eyes. I laid next to him until his breathing slowed and the sound of him sucking on his fingers faded to silence. Then I stayed a little longer, letting my own eyes grow heavy, and fell asleep by his side.