I don’t know about your family but in ours, having a young adult with complex disabilities never affords me any time to do the simple things in life, like finding time to read. The tired cliché of “there are never enough hours in the day” is the story of my life. Every day the list of things I need to do, want to do, would really like to do, outstrips even the most energetic and efficient person’s ability to accomplish. Now, don’t get me wrong. I’m not complaining or looking for sympathy from any “woe is me” stories. But occasionally I do get rather frustrated by the miniscule time slices I’m afforded to just do nothing.
A few nights ago, I found myself in unfamiliar territory. With the commencement of a new summer schedule of caregivers, Jan and I decided to skip the gym after work and get home earlier than usual. Ben had finished eating and was sitting happily in his wheelchair, using his talker to tell jokes. There, in front of me, was a full half hour to do whatever I wanted: Take a nap. Watch mindless TV. Write this blog post :) … even read!
With the most recent edition of the magazine, “America – The National Catholic Review”, on the table, I skimmed through it and came across an article titled, “Ordinary, Holy Families”. This oxymoron grabbed my attention and I dove right in.
A few minutes later, I realized that Ben had stopped telling jokes. I glanced over only to witness a concerned look on his face. As I approached him, it was clear he was in some kind of discomfort—gut-related, I’m sure. That’s almost always the reason. I decided to wait until his feeling had passed before getting him out of his wheelchair into a more comfortable position. With little hesitation, I went back to learning about ordinary, holy families.
Moments later, my eyes were drawn back to him. Instantly, his face had turned from happiness into the terrified look of a severe reflux attack. This is where he looks like he can’t draw a breath, his lips purse outward, his head shakes a little and his complexion turns very pale. Needless to say, unsettling to watch.
“Oh, geez! Ben!!” and I jumped to his side, apologizing that I hadn’t been paying attention.
I talked to him calmly, reassuring him, hoping he could calm himself. His panicky feeling subsided and he let out a series of coughs signalling the end of the reflux attack. For a moment, I felt like I had let him down. I saw an opportunity for myself to zone out for a brief period and ran with it. Bad decision.
I didn’t have much time to process my feelings of guilt when … BOOM … Ben’s entire body contorted in a full-blown seizure! Where did that come from? His reflux attacks are sometimes precursors to seizures but he had shown no other signs that he was “off” today. After about 2 minutes, the convulsions stopped. He was left exhausted and Jan and I were left a bit rattled, our confidence shaken. Exactly 140 days had passed—almost 5 months—since his last seizure and we were beginning to think he had conquered them, again.
The next two hours followed the predicted pattern of him being rather unsettled with crawly legs, arms moving about, head turning from side to side, and not much talking. Any thoughts of me relaxing because I got home early were sadly extinguished.
A few days later, I managed to finish the 4-page article on ordinary, holy families. It talked about the oft-spoken passage of the well-ordered family where the male is the head of the household, where children are to submit to their parents, and wives to their husbands. That’s definitely not us!
It talked about THE Holy Family (Jesus, Mary and Joseph) and how Joseph seems to drop out of the picture during Jesus’ youth, leading you to assume that Mary was an early widow. Again, not us!
But it also highlighted that the Gospel is littered with the messy reality of family life, and how married couples are mentioned far less often than singles (adults, single parent, and widows). Indeed, many stories of families in Scripture fail to fit inside the “family box”. Hmm … So does that mean that, maybe, there really isn’t a model family? That families were as diverse then as they are now?
For certain, the chaos, the pain, and the stress of our family life, and those families with persons with disabilities, would not fit into any box nor would they stack up against the iconic images of any well-ordered family model. Despite all our imperfections, the constant that has carried us through the years is the unwavering love we have for each other. And so it is for so many other families that don’t fit the mold.
Perhaps it was not coincidence that I chose to read that article instead of the dozens of other things I could have done in my “free” half hour.
I certainly don’t see ourselves as a holy family, but the article did challenge the definition of what truly is a holy family. That perfection is not a pre-requisite but rather it is the love that we have for one another.
There is no “head” of the table in our family but an air of inclusiveness and acceptance for every ordinary family.
Mike George is co-founder and chief motivator for SoaringFamilies.com(to be launched very soon), I am driven to help persons with disabilities and their families find their voice and place in the world. SoaringFamilies is about believing in a future that is bigger than the past, creating a world where all persons are accepted and included, and where every life is of equal value.