“No, no, no, don’t wake up. What the hell is going on tonight?”
It’s 1:35 am and we’re at my wife Allison’s parents’ cabin again, only a couple of weeks after our last visit, and I’m watching my daughter Em on the video monitor.
I call it watching Em TV.
I’m pleading with her to go back to sleep—even though she’s in the other room with a sound machine on and she can’t hear a word I’m saying.
This is the third time she’s woken up tonight. Usually, she sleeps fine in her pack-n-play crib here at the cabin instead of her specialty bed at home. I have no idea why tonight’s different.
Each night, regardless of where she’s sleeping, I have to give Em meds through her feeding tube in the middle of the night. They dampen her involuntary muscle movements due to her cerebral palsy disability and (hopefully) help her sleep through the night. But they don’t always work and she wakes up anyway. Sometimes she pees through her diaper. Sometimes a popping noise from our settling house wakes her up. Other times, she just, kinda wakes up for no clear reason.
I’ve already administered all her meds tonight, though. The first two times she woke up before her meds were in her system and she put herself back to sleep both times. That’s how it goes most nights when she wakes up. It can take her up to an hour or so to put herself back to sleep, but she’ll eventually get there. This time, she’s not happy about being awake.
And I’m not happy about it either. It’s bringing back familiar feelings from two years ago when I would get irrationally upset about her irregular sleep and I struggled with self-harm. She would wake up and I would take my frustrations out on myself by slamming my fist into the side of my head. I don’t feel like I’m the same person now—I’m not in that dark place anymore. But those tendencies are still in me somewhere and these moments make me worry they might come flooding back.
When Allison went to bed early for the night, she said, “Enjoy your five hours of alone time.” I was looking forward to doing some writing, catching up with friends online, and maybe watching an episode of Ozark. Instead, I’m watching Em TV and worrying that Em isn’t getting enough sleep. I start to relax a little each time it looks like she’s asleep, but then her arms flail and her eyes open, and I feel my cheeks flush and my jaw tighten. Then I start muttering at the monitor again. This isn’t enjoyable in the slightest.
She’s crying out now. I take a deep breath and think, just relax, Lyle, you can do this. I hustle into the room because I don’t want her to wake up Allison. As I suspected, she has a wet diaper. I pick her up, bring her out to the living room, and give her a quick change while trying to calm her with a soothing voice. But she’s not having it. She’s too upset about being awake at 2:30 am. Yeah, you and me both, kid.
When Em gets upset, her muscles tighten, which her physical and occupational therapists call her “tone.” I call it Tony. When Tony shows up, it feels like I’m trying to wrestle my three-year-old daughter and pin her down until her body stops fighting and she finally goes to sleep. But wow, she’s way stronger than she was two years ago and I’m getting more and more worked up about this situation.
I don’t know why it bothers me so much. It used to be so much worse when she was younger. Back then, she would scream and her body would twist into contorted positions almost every night. Though she’s older and usually sleeps better now, there are never any guarantees when it comes to parenting—even kids without a disability don’t always sleep through the night.
After thirty minutes, I give in and lay her down on the couch. It’s time to bring in some backup. No, I don’t mean waking up Allison and asking for her help. Instead, I head to the kitchen for a rescue dose of one of Em’s meds—a muscle relaxer that usually chills her out. I don’t like to use a rescue dose often, but it’s almost 3:00 am and we’re both exhausted.
She’s already a bit more relaxed lying on her back on the couch, and she’s not crying anymore, so I give her the med, move her a few inches over, and lay down next to her. I’ve often dreamt of cuddling and falling asleep next to Em in her bed, watching her lay there peacefully without her typical, near-constant muscle movements. But I can’t because her specialty bed at home has large plastic pieces designed to keep her in place. Plus, if I were to move slightly wrong, I’d wake her up and have to do the whole sleep routine all over again.
As she drifts off to sleep, at last, I want to watch her, take the moment in, and sear the dream in my memory forever. The problem is, my left hip is killing me, my left arm is asleep from the elbow down, and I have to go to the bathroom. For a few minutes, I consider staying in this spot and trying to sleep through the pain. But it’s too much. I slowly slither my way off the couch onto my knees and scoop her up. I’m pleading with her again, begging her not to wake up as I transfer her and carefully lower her into her crib and tuck her in.
The fight is over and I’m proud of how I handled myself. With the help of therapy and writing, I’ve come a long way from where I was a couple of years ago. I would allow myself some time to reflect and write about it right now, but it’s too damn late—or early, I guess—for that.
At 4:46 am I lay down in bed next to Allison. I fall asleep as soon as my head hits the pillow.
And thirty minutes later, I’m startled awake by the sound of Em moving again.
“You have got to be kidding me.”
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