A quick update: As I mentioned in last week’s piece, my daughter Em’s nurse is on the mend from COVID and feeling healthy again. She’s still in quarantine, but will hopefully be back working again soon. A few readers generously helped her with some extra cash. Thank you so much!
If you’d like to help her too, you can Venmo me and I’ll get it to her. Venmo username: lylemckeany. Or send me an email and we’ll figure out a way to do it.
For these types of stories about my family, here are a few details beforehand to make them flow better:
Em is my daughter. Her full name is Emily, but we mostly call her Em. She’s just over two-and-a-half-years-old and has severe cerebral palsy. She’s a happy kid and loves music (as long as it’s from her playlist).
Sara is my stepdaughter. She’s eight years older than Em. She’s a pro at Zoom school and she’s currently obsessed with going to the Dollar Tree.
Allison is my wife. She’s the super glue that holds us all together.
Okay, buckle up. Let’s do this.
Em is asleep in my arms. She woke up in the middle of the night and I’ve been rocking her for over an hour. Her body is finally calm. Her cerebral palsy makes sleep difficult because her body has a hard time staying still. I feel as if I’m fighting against her constantly moving body. I’m exhausted and my left arm is killing me.
That part was hard, but the next part is even harder—laying her down in her crib without waking her up.
I’ve tried so many different methods—the excruciatingly slow descent, the wiggle-worm, and the tuck-and-roll.
Tonight I’m going with the slow descent.
But first I have to prepare.
I support the back of Em’s neck and head with my left hand so my arm doesn’t get stuck behind her head when I lay her down. My right-hand keeps her arms snug against her body so that they don’t fly out to the sides if she startles. My right forearm secures her tucked legs. She is a compact little package.
I take a deep breath.
I reach my arms over the edge of the crib and lower her down to the mattress. I can’t move and let go of her right away because she still might wake up. I wait a few seconds, my body hunched over the side of the crib. She’s not moving. I painstakingly remove my hands one finger at a time, slowly pull them away from her body, and hover them above her while I look for any movement. She’s still not moving.
I feel like I can breathe again.
I pull my hands and arms up, bang the side of the crib with my elbow, and Em startles.
No, no, no, no, don’t wake up!
My face goes flush, my jaw gets tight, and my teeth grind together.
You’ve got to be kidding me! Not tonight!
Her eyes are closed but her arms are flailing and her legs are kicking. I swoop down and secure her arms and legs. The more she moves, the more likely it is that she’ll wake up and I’ll have to start the whole process over again.
No luck. Her eyes are opening.
She starts crying.
No, no, no, goddamnit. Why is this happening?!
I back away from the crib. My jaw gets tighter and tighter. My hands clench into fists. I feel like I’m going to burst at the seams.
Why can’t I catch a damn break for once?!
And suddenly I raise my right fist and I hit myself on the side of my head as hard as I can. Once. Twice. Three times.
It doesn’t feel good. But it feels like a release.
I’m so angry. Not at Em. She can’t control her body movements and I know she wants to be asleep. No, I’m angry at what my life has become—a daily struggle with no end in sight. And that anger had to go somewhere. It felt like some outside force took over. I’m scared I might do lasting damage if I keep doing this.
I was listening to Michael Phelps on a recent Tim Ferriss podcast and heard him say this:
“I actually took a pair of golf shoes and I hit myself in the head with them...I’ve never done something like that—I’ve never even thought of doing something like that. And the fact that I did. That right there was a message for me. It was a red flag.”
Hearing him say those words made me flashback to when I did something similar. It was validating to hear that even someone like him—who seemingly has it made in life—also struggles with his emotions.
In the past, I’ve known people who have cut themselves. I remember seeing the scars and asking about them because I was clueless and had never heard of people harming themselves like that before. I always viewed myself as an even-keeled person who would never need therapy, let alone hurt myself. But as it turns out, in high-stress situations, there’s water boiling just below the surface and the slightest provocation can cause it to burst out of me like a geyser.
A little over a year after Em was born, Allison and I were struggling. Both of us had been seeing a therapist individually, but we thought it was a good idea to do couples counseling as well. We had done it in the past and it helped a lot. And now we found ourselves in a much more intense situation, so it made even more sense to do it.
Our therapist gave us many tools and techniques that we still use to this day even though we aren’t seeing her anymore. But the one thing that stuck out the most to me was how she talked about the trauma we’ve experienced.
“Many clients I talk to who have had a traumatic experience, like maybe it’s a car crash or some type of abuse, it’s usually something that occurred in the past. And there might be things that happen every once in a while that trigger a memory of the trauma or something like that. But what you two are dealing with is different. You’re basically having to relive your trauma every day because Emily is struggling so much.”
In other words, it’s like we got in a car crash two-and-a-half years ago and have been reminded of it every single day since.
I’ve written before about how the day Em was born was the hardest day of my life. It was a deeply traumatic experience that changed my life forever.
As I wrote previously in part 2 of the story:
Our lives won’t ever be the same. The future we envisioned is no more. A fading memory of what could have been.
We’re sailing in uncharted waters now.
What I didn’t know at the time was that we’d be sailing past constant reminders of what happened that day—near-death experiences in the hospital, excruciating car trips, contorted body positions, and so many other things it’s impossible to list them all. And it’s like we haven’t stopped to dock our sailboat since that day.
Hitting myself is something I still struggle with from time-to-time. But as of this writing, I haven’t done it in months. I hate that I go there sometimes. I’m ashamed of it. I know I look as ridiculous as the baseball manager Lou Pinella freaking out on an umpire when I do it. I’ve worked hard at better managing those emotions through therapy and techniques like urge surfing, mantras, and Stoic philosophy. I have to be strong for Em and my family.
It helps that Em’s personality is coming out more lately. I love how she squeals with pure joy when her latest favorite song comes on. How she’s determined to play with a toy even when her body won’t cooperate. How her face lights up when I say, “Good morning, Em!”
There are still difficult moments each day. The reminders of the trauma are there and they won’t ever go away because cerebral palsy is a lifelong disability. But as time goes on and I continue to work on myself, the reminders won’t sting as much.
Thank you for reading. It means a lot.
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You’re the best!
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