Excerpt from my journal, Seizure 19

May 7, 2019

Nineteen.

Today's number. Just a few minutes past 7am as I lay in bed, his 19th seizure started. This time, I wasn’t even surprised. I got up, put on my bathrobe, and rolled him on his side while he seized. Almost on auto drive. Muscle memory. Conditioned crisis response.

The wide spectrum of emotions I feel when he’s having a seizure have been incredible. I’ve been panicked. Terrified. There are times it's difficult to even watch his seizures and times when I’ve sat calmly patting his back or stroking his hair. This morning, I barely batted an eye. Pulled out my phone and started timing.

The minutes crawl by. We never know how long it will last. All I know is that I am powerless to make it stop. We pray. We give him a blessing. Administer emergency rectal seizure medication when his seizures last over five minutes (which is almost every time).

A strange synchronous connection passes between our bodies. He seizes; I tremble. No matter how many times it happens, every nerve in my body is live and firing. I’m always timing, watching, judging, phone-in-hand “what do we do next?” Whether I’m calm or terrified, whether we call the paramedics or we don't, I can’t stop my legs from shaking.

We take second by second.

Is he breathing?

Yes.

Is he blue?

No.

We wait for the medicine to stop the seizure.

It doesn’t.

Unfortunately, that’s normal for him too.

We've gotten better about knowing when to go to the hospital and when to stay home now. We understand better now that his seizures will always be long. I had no idea seizures could last longer than a minute or two until his seizures started. Nothing about that is normal. But it’s normal for him.

16 minutes later, The seizure breaks, his normal breathing returns. Postlyctal phase. We never know how he’ll respond. Sometimes he goes right to sleep. Sometimes he whines. Often he screams. We don’t know what he feels. Headaches? Muscles soreness? Confusion? Dizziness? We recover together. He— limp from seizing. Me— weak from nerves and what feels like an emotional tsunami I just weathered. A flood of adrenaline now prevents me from sleeping,

The scariest part of every seizure—Can he still do the things he did before the seizure? Twice he’s had temporary paralysis called “Todd's Paralysis”after a seizure. Most often he’s so, so limp and weak. Luckily, no developmental regression so far. He cries. Screams sometimes. Sometimes falls into a deep sleep. I hold him and We try to return to normal.

After his fourth seizure, I wrote all my feelings to one of my closest friends. I remember ending that text with a question “how do we go back to normal after this?” I still hear her response in my head “Keir, I don’t think there is a normal after this.” There’s not. One of the most surprising things I've found about seizures is that it's not something that ends with the seizure. It’s not something that’s over when we leave the hospital, or when we give him medicine. It’s not something that has an explanation after the MRI, EEG, or Cat Scan is over.

Epilepsy.

It’s a constant, unpredictable, and ongoing part of our lives. It’s like ocean waves. You know they’re always going to come. You can’t stop them. The only difference is how close together they come, their intensity and ferocity. It’s always going to come back. It feels like my emotions are surfing.

And there are so many times when the waves destroy me.

Nineteen seizures later and I’m still grappling with it. These days we take one at a time.