Waffles and Cerebral Palsy

They have more in common than you ever knew

Photo by marianne bos

Two years ago, when my daughter Em was nine months old, she was being fed my wife Allison’s breast milk in two-hour-long feeding pump sessions. It felt like she was tethered to the pump constantly throughout the day.

Each night, I would toss the used pump bag and replace it with a new one. The new bag came with a sticker that’s typically used in the hospital to display things like the patient’s name and feeding schedule. At some point, I discovered a website for finding oddball holidays and I would write a few on the sticker with a Sharpie each day. I wanted to start our days off with a smile and, who knew, maybe we’d learn something each day too.

There were so many funny and weirdly specific holidays like National Bubble Wrap Appreciation Day, Take Your Parents to the Playground Day, and National Sneak Some Zucchini Into Your Neighbor’s Porch Day. Did you know Halloween is also National Knock-Knock Jokes Day? Well, now you do. One of my favorites was October 4th, which is both National Taco Day and National Golf Lover’s Day—a perfect combo if I’ve ever seen one.

When I looked up the holidays for March 25th, I not only saw that it was Waffle Day, but it was also Cerebral Palsy Awareness Day.

I remember a surge of emotions hit me and I looked at Em sleeping in her bassinet on the video baby monitor. I thought back to the hospital when she was only three days old and Allison and I were eating breakfast at the hospital cafe.

The night before, I had stayed up late reading about the therapeutic hypothermia protocol Em was on at the time. It’s where they reduced her body temperature by six degrees for seventy-two hours. Em wasn’t breathing when she was born and she suffered a brain injury due to the lack of blood and oxygen. The cooling was sort of like icing her brain injury. I learned that babies who need it often have some measure of cerebral palsy.

I mentioned what I had read to Allison. She seemed shocked to hear it, so I said I would ask the doctor about it instead and I quickly changed the subject. The doctor said it was likely, but it was impossible to know the extent so early on.

Since then, we’ve learned that her cerebral palsy is more severe than we ever expected. At first, it was hard to know how bad it was because she was so young and most babies can’t do much on their own anyway. But the severity has slowly revealed itself over time. Her trouble swallowing was a clear sign within the first few weeks. As she has grown, there have been other signs. She’s almost three now and she still has trouble bringing her arms to the middle of her body, she can’t hold her head up without support, and she can’t crawl.

Throughout this time, we’ve been clinging to the hope that she will be able to figure out how to move her body more effectively. But as time has passed, it has become more obvious that it’s going to take her much longer. And maybe she will never be able to do things you and I take for granted like eating, walking, and talking. Cerebral palsy is a life-long disability and there is no cure or foolproof treatment. Weekly physical and occupational therapy sessions are the best tool for improvement, but the progress is painstakingly slow.

Before Em, I had basically zero direct experience with cerebral palsy beyond watching the occasional inspirational video that would go viral. One of Allison’s cousins has cerebral palsy, but he’s able to live on his own, he can get around with a cane, and he can even drive his own car.

The spectrum of cerebral palsy severity is wide. I’m sure there are many people you’ve met in your life who have mild cerebral palsy and you’d never know it. Then there are others who need 24/7 assistance. And everything else in between. 

One thing I’ve learned through this experience is to have more empathy for people with disabilities and their families. It’s so easy to overlook them as I did for much of my life. We’re all dealing with our own struggles, of course, but theirs are more intense and acute. They can’t just take a vacation to get away from it all for awhile. It’s a daily struggle. But behind every disability, there’s a human being with feelings, hopes, and dreams. 

If you know someone with cerebral palsy, reach out to them today and ask them questions about their experience. If you don’t know someone, but you still want to help, make a donation to the Cerebral Palsy Foundation today.

People with cerebral palsy are humans just like you. They want to be seen and heard and cared about. When I look at Em, I don’t focus on her disability anymore. I see a smiling, laughing girl who loves music, standing (and sometimes falling asleep) in her stander device, and playing with her toys.

Em finds joy in life despite her disability and that should be inspiring for us all.

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Some fun stuff:

This year, I’m on a mission to be a guest on a bunch of podcasts to spread the word about my writing more. I’m calling it Lyle’s Podcast Tour 2021. I recently made the first couple of tour stops on two much different podcasts, but I had a blast on both of them.

First stop, the Moshpit Passion podcast. We went deep talking about my days in my old band Pressure 4-5. The host is from Germany and he discovered our music about six or seven years after we had stopped playing when he heard our song “Melt Me Down” on the Tony Hawk Pro Skater soundtrack. It was a fun chat and it brought back a ton of memories from—*gulp*—nearly twenty years ago. Listen here

Second stop, The Ben & Tony Podcast. I met the cohosts while attending a writer's fellowship at the end of last year. We hit it off and quickly scheduled a time to record a podcast episode. Be sure to subscribe to their podcast for in-depth conversations with interesting people about their life transitions. Listen here

If you host a podcast or if you know someone who does, let’s chat!

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