When My Son Had His First Seizure

I haven’t been sleeping well. I’ve always been a light sleeper, waking up each time my sister moved around in her bed next to mine or when I heard someone’s heavy footsteps on the wooden floor of the stilted house I grew up in. Four years ago, it got worse.

When you bring home a baby who can’t cry, your instincts are piqued to do what is necessary. The smallest rustling of his blankets had me sitting straight up in bed, squinty and blind, shaking Arick and saying “look at Avery!” Sometimes, he pulled his oxygen tubing down and tried to suck on it. The almost silent swishing sound the air made even woke me up. So, I’ve been sleeping badly for a while now. The past few days though… it’s become not sleeping at all.

We’ve had plenty of reason for sleepless nights with Avery. In the beginning it was,”Will he make it through this night?” When will he gain weight? Will he have a brain bleed? Then surgery. When he’d stop digesting and go back on TPN. Infections. Fevers. Aspiration. Choking. Pneumonia. Pain. RSV. Then CP. PMG. Will he ever sit up? Crawl? Talk? Walk? Will he, like the majority of the population with PMG, have seizures?

Wednesday morning that question was answered for us, and not in the way we wanted it to be. “Avery had a seizure.” God, no. Please, no. Don’t let it be true. Let this be a dream. Wake up, Steph. But it wasn’t a dream, and it has cast a dark shadow on every moment since then.

An hour ago I heard a loud sound from his room so I yelled his name. He didn’t answer so I panicked and ran that way. There he sat, in the middle of the room, grinning at me. “Gosh, Avery! You have to answer me.” “Okay my Mommy!” Ten minutes ago, another loud thump. In my mind I see him on the floor, seizing. This time I don’t call him, I just run. Relief floods over me when I see him sitting there, softball in hand. I’ve had a hundred mini heart attacks a day since Wednesday. I told myself it’d get better as the days pass but it’s actually been the opposite. The more time passes without another seizure is the less time there is until the next one. That’s a pretty messed up way to see it, huh?

I’ve been waking up every 30 minutes or so at night, breathing fast and overcome with worry. I look over to see if he’s OK. Most of the time I can’t see and I wake Arick up to look at him with me. He assures me that he’s fine, but if my anxiety is so bad I have to get up. I’ll walk over and look down at him to see the gentle rise and fall of his rhythmic breaths. That’s usually not enough, though. I reach down and put my palm between his narrow shoulder blades and I feel it. I feel the breaths. Only then do my own breaths calm.

I’m so scared. What happens when he has one in front of me? Is it a blessing that his first was at school so I didn’t witness it, or do I wish I’d have been there to hold him? (Yes.) When we are alone, will I panic or handle it? What happens if he vomits? If he has one in his sleep and I’m not there? How do we process all of this on top of what we already struggle with?

Then it hits me: it’s never been easy!

We brought home a baby that used to weigh a pound. Gave him nine medications around the clock and cared for his oxygen needs. Watched his monitor. Handed him to surgeons and healed his scars. Spent thousands of hours in therapy learning to crawl, then walk. Cried with each diagnosis. We’ve done hard. We know it well.

So, he had his first seizure. Now we have the answer to that last question, the hardest question. It isn’t the end of the world. Just another thing. Yeah, it’s scary as hell. But who’s more qualified to deal with it than me and Arick? We’re rock stars at this point. So bring it on. We’ve got this, too.

Ultimately, us accepting it and managing to keep going will allow him to do the same. The last thing I want is for him to live in fear of the next one and let it dictate his life. There’s too much life to be lived! If he sees us scared, he will be, too. We have to be strong so he can be strong. Although I don’t see that being a problem. He’s the strongest little boy in the tiniest little body I’ve ever seen. And he always has been.

Image Credits: Stephanie Hartman

Banner image Avery enjoying a popsicle in the hospital the evening of his seizure.

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