I haven’t been sleeping well. I’ve always been a light sleeper, waking up each time my sister would move around in her bed next to mine or when I’d hear someones 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 would have me sitting straight up in bed, squinty and blind, shaking Arick and saying “look at Avery!” Sometimes, he’d pull his oxygen tubing down and try to suck on it. The almost silent swishing sound the air would make 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 would 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 thirty minutes or so at night, breathing fast and overcome with worry. I look over to see if he’s okay. 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 too 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 9 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 thang. Yeah, it’s scary as hell. But who’s more qualified to deal with it than me and Arick? We’re freaking special needs parent rock stars at this point. So bring it on. We’ve got this, too.
Ultimately, us accepting it and managing to keep going is going to allow him to do the same. The last thing that 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. We have to be strong so that 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…
Avery enjoying a popsicle in this hospital the afternoon of his seizure.