What About the Boy?

A Father's Pledge to His Disabled Son

by Stephen Gallup

What About the Flop?

No

When you resolve to do something, and discover that it’s difficult, do you continue with what you’ve started?

For me, sometimes the answer has been no. I haven’t continued. There have been projects that initially caught my fancy, but before long their attraction just didn’t outweigh the reasons for doing other things. For example, once I thought it would be cool to learn Japanese. But it turned out I had no particular reason for learning the language, and pretty soon life’s daily priorities intervened. I let it go.

But in chasing some goals, no matter the frustration encountered, I’ve stayed the course. The difference is that in those cases I really cared about what I’d undertaken to do. Caring is a function of interest, yes, and also of conviction that the goal is important, and a mental image of the hoped-for change to come. Caring drives one to make the effort necessary to go back and keep trying—and to find another way forward if the first, second, and third avenues don’t work out as expected.

High achievers tell us that process can be fun. For them, the chase is at least as gratifying as the capture, and victory isn’t even very sweet if there wasn’t some doubt along the way. (Some high achievers scarcely acknowledge victories, because the goal they’re really pursuing continues to recede before them.)

Onlookers, meanwhile, may not perceive the extraordinary effort they put into those victories. There’s a temptation sometimes just to admire the end result, without considering how it came to be.

But let’s say we are not especially high achievers, or that the things we crave seem pretty mundane. That doesn’t mean we won’t still find challenges that exceed our current abilities. Finding them, we attempt to improve matters, and fail. After a few tries we start feeling discouraged. That’s natural, but the important thing, motivational speakers tell us, is not giving up: We won’t give up if we truly care.

Everyone likes stories of humble strivers, driven by passion, who finally achieve their dreams—even if, or especially if, the process is chaotic.

I wanted very much to contribute a story like that, which was a reason for writing What About the Boy? Even more, of course, I wanted to accomplish the objective around which that book continually circles: I wanted my son Joseph to overcome his developmental difficulties. I wanted him to enjoy the normal options available to other kids. That’s all. I wanted him to grow up and be self-sufficient. A modest goal, right?

Probably not a reasonable goal, according to his first pediatrician.

His mom Judy and I took him to other doctors, then to a series of specialists, and got nowhere each time. So, trying a different tack, we took him to alternative providers. When therapies were recommended, we implemented them ourselves. When we couldn’t do it all, we enlisted help. Whenever one line of inquiry petered out, we found another.

That campaign is the subject of WATB. Readers of the book may observe that my approach was plodding and steadfast, whereas Judy’s was somewhat mercurial. I thought our styles were complementary. But the story shows that we reached a point at which she could go no further. Literally. Then I stumbled along on my own. Yes, the process was chaotic.

But past a certain point Joseph did not get better. Actually, he regressed somewhat.

This did not occur because of any deficit of caring or tenacity on our part. Other forces were at work. I needed to understand them, but couldn’t.

More recently my focus has simply been on providing the basic support Joseph needs. Still, I kept alive in the back of my mind the question of how I might finally make more of a difference for him. The trouble was that new ideas were no longer forthcoming.

A goal with no realistic means of attaining it is just a fantasy.

So what gives with all the encouragement one hears about dreaming the impossible dream? Never giving up? Winning?

Well, let’s see. You might suggest (as some folks have) that Joseph’s recovery was our wish for him but not necessarily his wish for himself. I would argue my belief that there was never a time at which he would not have welcomed the chance to be a regular kid. But on the other hand he likely did not marshal internal resources in pursuit of that objective the way his mom and I did. Things become a little sticky when the goal is for another person. From his perspective, the intangible concept “wellness” may have resembled my notion of learning Japanese.

That possibility does not lessen my own feelings of frustration and disappointment. As his dad, I continue to want the best for him, and the life he’s had these thirty-plus years is far from optimal. Anyone who thinks otherwise is just plain wrong.

But lately a new thought has come to mind. Maybe overcoming his disability is not my ultimate objective. Maybe, instead of simply trying alternate methods of achieving that, I need a better understanding of what he needs most of all.

Over the last year he’s been up against a significant new challenge. He has metastatic melanoma.

At the low point in this past year, he’d lost the ability to stand up without assistance. He needed a wheelchair to go more than a few steps. And without meds he lived in pain. Intervention from the exemplary staff at the UCSD Moores Cancer Center got him past all that. Now (on good days) Joe and I again take long walks around the neighborhood, as we did in bygone times. He’s usually comfortable. But despite this progress, he still has the illness, and his long-term odds don’t look good. The next treatment protocol has a success rate of only 16 percent.

There was a time when poor odds meant nothing to me, because I believed in beating the odds. Along the way, I’ve lost that conceit.

But now, when I tuck Joseph into bed in the evenings—when I pull that fuzzy blanket up to his chin and he snuggles in for the night—he gives me the sweetest smile imaginable. At that moment, I know I’ve enabled him to experience some happiness.

Yes, it’s modest. But maybe this was my objective all along.

bedtime


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