Taking the long view
While our child is sick, we parents quite naturally see his speedy recovery as our number-one objective. We take him to the doctor. We get the appropriate medications. We keep him comfortable. And, almost always, he does recover very soon. Then everyone can return to more pleasant activities.
It’s natural to want a similar outcome if health issues arise that present a greater challenge. And of course, there’s nothing wrong with high expectations. Optimism is part of healthy living. When we believe things will work out well, we are happier and also better able to reassure a child who may be confused or frightened by his circumstances. This does not change the fact that some conditions, such as developmental disabilities, have no easy cure.
As the father of a little boy with poorly understood developmental challenges, I assumed at the beginning that surely some specialist out there would know how to help. All my wife Judy and I had to do was locate that expert.
Our son Joseph was not sick, in the sense of having an infection. There was no obvious injury. But he was in distress and functionally in terrible shape. He cried all the time. He had trouble keeping down his milk. Months passed and he failed to achieve the usual developmental milestones, such as crawling. No one who examined him seemed to know why. No one seemed particularly disturbed by the fact that they didn’t know why. No one recommended any treatment. This lack of a decisive response from the professionals upset me as much as did the problem itself. My reaction did disturb the doctors. I was not being reasonable, they said. Perhaps I needed counseling.
I reminded the doctors that I was not the patient.
Judy and I broadened our search and eventually did find providers who said they understood what was going on with our little guy. They offered alternative treatments—interventions not endorsed by the mainstream medical community. Some of these providers helped him. By the time he was two years old, he had finally stopped crying and had begun to pay more attention to the world around him. He no longer vomited every day. He had finally begun to crawl.
Judy and I believed that, at long last, we had found a path that would lead our family out of the distressing circumstances that had prevailed since Joseph’s infancy. Finally, we could look forward to enjoying a normal life with our son. And pending the arrival of that happy day, we felt enormously upbeat.
We understood by that point that the road would be long. I thought at the time it might take another two years.
Two very intense years later, Joseph had become a capable long-distance walker. He could swing by his hands on playground equipment. To a casual passer-by, he looked fine. But some problems lingered. Most alarming was the fact that he didn’t talk.
The alternative providers who had helped get him to this level could not address the remaining challenges. Judy and I renewed our search. Again, we found people who professed to have answers. This time, we were not so fortunate in the outcome. Joseph’s progress slowed and came to a halt. Today, he is a healthy, amiable adult, aside from the inescapable fact that he’s still disabled.
Obviously, the campaign to help him was not futile, because he did achieve major quality-of-life improvements. But it is also apparent to me that the trajectory of our campaign was problematic and more difficult than necessary. It brought us moments of utter joy but also intense frustration.
Neither emotion cancels out the other.
Sometimes life introduces circumstances unlike anything we would have chosen. And sometimes no good exit from those circumstances is apparent. Personally, I believe that it is reasonable to seek solutions for problems, even when those problems resist one proposed remedy after another. A single-minded pursuit of answers can inspire confidence and give life new direction. At the same time, parents of a disabled child must remember to take the long view. We must be kind to ourselves now, while we work toward a better future, even without attaining the longed-for objective, because this moment too is life. This moment too can be all that we make of it.
Our kids need that reaction from us, too.
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