I'm a Disability Dad
and I always will be
I’m a disability dad.
Nothing really prepared me for it. It just happened. It was a freak thing. My wife Allison and I didn’t do anything wrong. And we had no way of seeing it coming.
Sure, there are times when I wonder what life would be like for our family if we had left for the hospital sooner—for my daughter Em, especially. It’s only natural. But I don’t regret any of the decisions we made that early morning in June 2018.
Before Em was born, I was somewhat terrified to become a typical dad. Having a stepdaughter at home ever since she was four years old mostly helped me refine my dad jokes, not learn how to change a diaper or console a crying baby.
Many years ago, I went to Disneyland with some friends. I offered to hang with their baby daughter while everyone else went on Splash Mountain one last time. She was maybe six months old at the time. I think she’s probably 15 or 16 now. So yeah, it was a while ago.
“Are you sure you’ll be ok with her?” said her mom.
“Of course. Go enjoy the ride. We’ll be fine,” I said.
They walked off and as soon as they turned the corner out of sight, the little girl who was so sweet and smiley moments ago turned into a small demon. She screamed so loud it made me jump. In no uncertain terms, she was trying to tell everyone within shouting distance, “This is not my father! He’s an imposter! Help me! He clearly doesn't know what he’s doing!”
Despite my best efforts, she continued to scream nonstop until her parents came back. As it turns out, you can’t rationalize with or bribe a six-month-old. Telling them, “I swear your parents didn’t disappear forever,” or, “If you stop screaming, I promise to buy you whatever you want,” doesn’t work. When I was able to finally hand her off to her dad, she instantly quieted down and I thought I’d never go on to possess his seemingly magical touch.
I’ve never really felt comfortable holding a baby in my life. It always seemed like I was doing something wrong or I was going to hurt the kid on accident. I mean, I run into things and injure myself on a near-daily basis, and now someone was trusting me to not ram this kid into a door jam or body slam them when I inevitably trip and fall?
Before Em was born, I studied up to try to ease my worries. I read an excellent book called The Expectant Father that had all kinds of helpful tips to prepare for becoming a father. I even bought the author’s follow-up book called The New Father, which quickly became irrelevant as we learned more about Em’s disability.
Em has cerebral palsy (CP). It manifests in wide-ranging ways, but principally it affects muscle movement. It can range from mild where you might not even notice someone has it, to debilitating, requiring 24/7 care. Em’s CP is somewhere in the middle, yet skewed more toward the debilitating end of the spectrum. Let’s put it this way, a motor movement specialist doctor once told us, “Usually if kids can sit up on their own without assistance by the time they’re two years old, they have a good chance of being able to walk on their own at some point.” Em is nearly four years old now, and she’s nowhere near being able to sit up on her own, let alone walk. She still can’t even hold her own head up consistently.
At Em’s age now, I expected her to have toddler toys strewn about our house, but I didn’t expect them to be specialty adaptive toys. I look at the oversized medical devices, the 16 syringes filled with medications we have to give her each day, and the dedicated drawer in the kitchen filled with feeding tube supplies, and I can’t believe this is our life.
Yet I’m taken aback by how normal it all feels most of the time.
I don’t even have to think about how to use her feeding tube anymore—the series of movements is forever ingrained in my muscle memory. Open. Screw. Un-Crimp. Push. Crimp. Unscrew. Repeat.
When Em gets upset as I’m putting her in her stander device, I turn it into a fun game for her when I say, “Annnndddd, click!” as I snap the straps together.
I ask her if she wants to listen to her music or play a game on the iPad, even though I know she can’t answer me back.
All dads have to adapt to their kids’ unique personalities and tendencies as they change over time. I have to do that too. But I also have to adapt to Em’s limitations and how those change—or don’t change—over time.
Thinking too far in the future is difficult. It brings up more questions than answers.
Will I need to change her diapers forever? Will we ever be able to take her feeding tube out? Will we need to install a harness system to move her once she’s too big to carry? Will she ever be able to live on her own? Will she be happy despite her limitations?
These are questions I don’t even want the answers to yet. But I know I’ll adapt and cross those bridges when I get there. Just like a typical dad would.
Thank you for reading.
If you’d like to learn more about Em’s disability, you can read my post Waffles and Cerebral Palsy.
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Beautifully written, as always Lyle. I love when Em gets to join our Wayfinder meetings!
Thank you for this, Lyle. I consider what you’re doing with these essays to be vitally important work in demystifying this experience and giving people a window into this often unremarked upon reality. Really, excellent stuff as always.