Disabled Daddy

by John Buchbach

about the author:

John Buchbach is 45 years old with Duchenne muscular dystrophy (DMD), a terminal muscle wasting disease. Despite DMD, he has kept busy over the years with attending business school, working, owning his own business, and now, being a dedicated family man.

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Disabled Daddy

Over the past 43 years, I have held many titles such as son, student, employee, boss, boyfriend, husband, ex-husband, and husband again, but none of these have ever meant as much as Dad.

When I turned 42 years old in 2018, I became ventilator dependent due to complications associated with Duchenne muscular dystrophy, which caused an inability to expel carbon monoxide when exhaling.

Around the same time, I medically retired from my job and moved to Orlando, Florida with my future wife.

Throughout the following year of 2019, I was in and out of the hospital with pneumonia and other complications as I adjusted to life on a ventilator. Despite the challenges, I always tried to stay positive because the ventilator gave me more time, and I had no intention of wasting it. My girlfriend and I had always discussed starting our own family, but even trying to conceive proved to be difficult while facing life’s obstacles.

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Hope

It was during a late 2019 hospital stay that I began to lose hope. Doctors delivered grave news, and I was in a bad mental state due to fear of the unknown. My mind was stronger than my body could perform. I was being prepared for a heart catheterization procedure, and I was beyond scared. I believed that this was the end of my life, and tears filled my eyes as I said goodbye to my girlfriend (now fiancé).

As they wheeled me toward the operating room, my girlfriend leaned over and said, “You have to be brave because you’re going to be a daddy.” Those words echoed in my mind throughout the entire procedure, and I can hardly recall the rest of my hospital stay because all I knew was that I was going to be a dad, and I had to be there for my child and my now wife.

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“…with Duchenne,
he won’t even live to be 13-15 years old…”

– John Buchbach‘s physicians –

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Miracles Happen

When people say “a positive mindset can make miracles happen,” they have never spoken truer words. After being discharged from the hospital in 2019, my wife’s pregnancy kept us busy and filled with joy to the point that I have not needed to return to the hospital since 2020.

After experiencing some complications and spending six weeks in the NICU, my son was born, and he is a healthy, handsome, and intelligent young man. Moreover, because he is a boy, there is no risk of him having Duchenne muscular dystrophy.

From the moment he was born, my life took a complete turn. I could have never imagined loving someone so deeply. I remember holding him in my arms and envisioning all the things I wanted to show him, teach him, and share with him. He would look up at me and simply listen as I rambled on.

I promised him that I would be the best daddy, and my disability would not limit me.

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A Hands-On Dad

I quickly realized that I needed to make some adaptations to my wheelchair, tables, and other things in order to be a hands-on dad.

We made adjustments, such as adding harnesses so I could easily hold and move around with him. We also adapted bottle holders so I could feed him independently. Most importantly, we adapted a car seat to the front of my wheelchair so I could take him for walks and essentially use it as a stroller.

I wanted to be as involved as possible, and we achieved that because I did most of the feedings, rocked him to sleep, comforted him when he was colicky, and formed important bonds during the early stages.

These moments are unforgettable, and I wouldn’t change them for anything in the world.

“Never give up.“

– John Buchbach –

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Today

My son is now 3 years old, and we have an amazing relationship and connection. I still modify my wheelchair so I can carry him, and I am his go-to for nap time. He loves his daddy, but he has no idea that it will never compare to how much I love him. I have still not been back to the hospital (knock on wood), and I treasure each day as a gift while creating lasting memories with my son and wife.

I hope this brief story about me gives you hope and serves as a reminder that Duchenne muscular dystrophy is a disease we must adapt to. Do not let it define you, and never give up because you never know what lies ahead in your life’s journey.