What I Can't Fix: A Father's Perspective
I'm a fixer by trade, both personally and professionally. At work, I design and build furniture. At home, I'm the husband who fixes the lawnmower, the dryer, and the water heater. Most days, the list never ends.
Since having my daughter, Olive, I've learned how to fix wheelchairs, standers, and lifts. I've built ramps, designed an accessible changing table for her room, and modified her bed.
Dad fixes stuff.
But the harsh reality is that there are some things, many things, I can't fix.
I can't fix brain damage.
I can't fix Dystonia.
I can't fix Cerebral Palsy.
I can't fix how a large part of our society views and treats disabled children like Olive.
I can't fix broken healthcare and education systems.
I can't fix the fact that my wife and I rarely get a break from 24-hour caregiving at the same time.
I can't fix how inaccessible much of the world still is.
I can't fix how expensive everything Olive needs is.
I can't fix the fact that some people simply don't, or won't, get it.
As a dad, that's a hard pill to swallow.
The hard part about raising a medically complex child honestly doesn't have much to do with Olive. It took me a long time to come to that realization. Olive is easy. Olive doesn't need fixing. She is perfect. She's a really cool kid with a wicked sense of humor, and she makes me proud every single day.
What's hard is everything that comes with having a disabled child. Most days, we're like any other family. Then something happens, or something is said, that knocks the wind out of you. Recently, it was the delivery of adult-sized diapers. Olive has outgrown the cute pediatric ones. There is no in-between. Holding up a diaper designed to fit a grown adult is like a slap across the face. It reminds you of expectations you once had and the countless adjustments, concessions, and recalibrations you've made along the way, because that's what dads do.
Balancing love and joy with cyclical grief for twelve years running is like walking a tightrope that is actively on fire. Everyone else is admiring the act while I'm focused on keeping my balance and moving forward, fully aware of how high the stakes always are. Things can change on a dime.
I love everything about my daughter, and I will continue fixing every single thing I can for her. I just wish so much of the world around my daughter wasn't so broken. Because the truth is, Olive was never the thing that needed fixing.
The Courageous Parents Network (CPN) seeks to provide parents of medically complex children the courage and confidence to function, thrive and grow, knowing that they are not alone.
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Jared lives in St. Louis, Missouri with his wife, Julie, their two kids - Olive & Wilder & dog, Camp. Jared's family relocated to St. Louis from rural Arkansas in 2018 for access to better health care and educational access for Olive. Olive was diagnosed with Cerebral Palsy stemming from Viral Encephalitis that she contracted at birth. Jared works as a self-employed Furniture Designer + Craftsman, but his favorite title is Olive's roller coaster riding, movie watching, hair braiding buddy.