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I Know How He Does It: Parenting From A Wheelchair

With virtually no use of the muscles in his mid-section, maintaining trunk balance can be very challenging for my wheel-chair bound husband when both hands are occupied. Ever try diapering, feeding, holding, soothing a newborn with one hand? Let me know how you do.
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"Honey, I just took a pregnancy test and it came out positive."

My husband's response to this news was typical of his reaction to most things. He was calm, collected, thoughtful. He smiled at me, took a deep breath and said, "OK." We both stared at the pregnancy test stick, put it under a brighter light just to be sure, and then... honestly, I don't remember. The surprise was so great that it still blurs my memory to this day. Sure, it's always a bit of a shock when that second line or plus sign appears, but we weren't just your average couple trying to have a baby. In fact, many people (including some doctors) thought it might never happen.

I've already used a few adjectives to describe my husband, but one I haven't mentioned yet is disabled. A spinal cord injury in his early 20s left him paralyzed from the mid-chest down. By the time we met, he was already past the ten year mark in his wheelchair. The idea of being in a relationship, let alone fathering a child, was, at that time, more of a distant wish than anything. But yes, sometimes wishes do come true, and there we were staring at a positive pregnancy stick to prove it.

And then our healthy, beautiful son was born. What's the expression? Careful what you wish for? The early days of parenthood were rough for all the typical reasons: lack of sleep, lots of crying (baby's and mine), figuring out a schedule -- all the usual suspects. But the truth is, we weren't your typical family and there were challenges my husband faced that most new parents do not.

Due to the level of his injury, the ability to perform two-handed tasks is limited. With virtually no use of the muscles in his mid-section, maintaining trunk balance can be very challenging when both hands are occupied. He often needs to have one hand grounded to help keep him upright. Ever try diapering, feeding, holding, soothing a newborn with one hand? Let me know how you do. Add to that the fact that we were first-time parents (read: nervous wrecks) and the end result was lots of mommy-baby bonding time with dad left on the sidelines providing mommy support when needed.

Being on the sidelines was difficult for my husband at first, especially as he watched his own father dive right in and help. We're fortunate to have all the grandparents live nearby and they were a big part of those early years. Both grandfathers were our primary babysitters and there was no task they would not or could not do. My husband made the conscious decision to be grateful for the help and reassured himself that his time for father-son bonding would come.

It happened slowly, but it did happen. Our newborn became a toddler who would ride on his dad's lap. A bit older and still on his lap, they would zoom down the hills together in Riverside Park. When swords became an obsession, the two of them would battle it out while I operated the video camera, happy to take my turn on the sidelines.

He grew to be an empathic, sensitive boy who one day said, "Dad, I'm sorry you can't walk. I wish you could." He was reassured that it was nothing to be sorry for and encouraged to keep talking about it if he wanted to. And he does, but not that often. Having a father in a wheelchair is something he's always known, so maybe for him, there's really not that much to discuss.

He's 13 now and while our journey didn't start off too similar to that of other parents, most of the experiences and challenges are the same. We found him the right schools and were lucky that they were also wheelchair accessible. (Though there exist many schools which have either limited wheelchair accessibility or none at all -- an unfortunate barrier to full parental involvement.) We ride bicycles in the park -- two standard and one hand-cycle. We go on vacation to places everyone else goes to, only we make sure to find the ramped entrances, wide doorways and working elevators.

We're a family just like any other family, even though the roles we play don't always fit into the standard family paradigm. Take recently, when instead of father and son pretending they're warriors fighting to the death, it was me indulging my son's latest obsession. We bowed to each other and then playfully engaged in battle. When it was over (and I was soundly defeated) my son turned to his father and said, "Dad, I wish you could walk so I could beat you to a pulp!"

OK, so not exactly what we pictured when we imagined father-son bonding. But then again, is parenthood ever what we thought it would be? Able-bodied or not, isn't it always so much more?

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