Reflections on Being a Parent with a Disability

A version of this blog was originally published in Breaking Ground, a quarterly publication of the Tennessee Council on Developmental Disabilities

I am a person with a disability. I survived a traumatic brain injury following a car wreck when I was 18. My disability is visible in the partial paralysis of the right side of my body which affects the way I walk and do things with my one useful arm. My disability is not so visible in my sensitivity to emotions and a hundred other idiosyncrasies that are either part of my personality or part of my ‘rehabilitated’ person.

In 2006, I completed a Post-Secondary degree in Social Work and soon after proposed marriage to my then girl-friend (and former note-taker) Mary. Three years later we were married and soon became pregnant! Wow! What had I gotten myself into?

Before our child’s birth (we did not want to know its sex), I was ‘comfortable’ in that I had several years’ experience in my current job, I had a reliable car, and I “owned” a home (really just the note to the bank!) But now I was going to be a father—the parent of another human being! Ordinarily, this is something that happens around the world to more than 237,000 new parents every day, but because of my experience, I felt—perhaps irrationally so—that statistics of accidents or disease etc. were more likely. After all, somebody, including myself was behind each number in any one of the statistics that you read or hear about!

So, we participated in all the standard health pre-screenings available at Vanderbilt hospital and learned that we had, to the best of their knowledge, a typical and healthy baby. That was good news! Nevertheless, Mary and I read numerous parenting books and did what was proscribed (and didn’t do what was generally known to not be good for expectant mothers!) Well, May 23rd, 2011 Mary went into labor and early the next morning our 7 lb. 6 oz. boy was born! (Days later we chose his name ‘Jack.’)

Jack is now two and a half. I still sometimes worry about the day—coming very soon—that Jack will realize that his father is not quit like other typical fathers—that “Papa” has a disability. That I cannot run or lift him in my arms over my head, or have Jack sit and ride on my shoulders, or do most of the things those fathers without physical disabilities can do. More importantly, however, I’ve realized that the most important and greatest part that I can and will play in Jack’s life is—in one word—love. I am there for Jack. I play with him. We laugh when I tickle him. I hug and kiss him when he bumps his head. I read him a story at bedtime. I change diapers, bathe him and prepare food for him. I teach him how to do things—everything from eating with a fork, to sipping from a cup, washing his hands, to say ‘please’ and ‘thank you’.

I know he will soon realize. I also know he will inevitably regret that his father maybe can’t do things his friends’ fathers do. (When I was a boy, I recall moments where I regretted my Dutch father wasn’t like my friends’ American dads!) I also know Jack will mature, and will gain appreciation for what it was—and will be—that I gave and did for him, just as I now appreciate my own parents. Additionally, he might grow with enhanced empathy for, sensitivity to, and understanding of, disability in the way that only a child of a parent with a permanent disability can experience. In our time of rapidly aging populations and an increased likelihood of experiencing disability in our lives, either directly or indirectly, I hope Jack will benefit from his experience and turn all the ‘lessons’ into assets and strengths to become a better, more likeable, person.

I am a very proud father of a very cute two and a half-year-old little man! My disability is now part of me, and also part of Jack’s life for the rest of mine! My appreciation for life and my ability to love, though, are both incalculably greater because of my disability—and that is not something to lament or regret, but to embrace and rejoice! I am certain my disability will make my son someone he could never be had it not been for my disability!