My wife Judy and I were clueless first-time parents when our son Joseph was born. At least, we thought we knew nothing. We felt sure that doctors, nurses, more experienced parents—practically everybody on the planet—knew more about kids than we did.
When he was a couple days old, the medical people told us they planned to keep him in the hospital for observation and tests. Something about him wasn’t quite right, and they wanted to investigate further.
Well, they were the experts! We felt disappointed, of course, but we had complete faith in their ability to figure out whatever problem our son might have, fix it, and then let us begin our journey together as a family.
Two weeks later, when they finally discharged him, no one knew much more than we had at the outset. Something still was not right. However, they didn’t have a name for it or a prognosis as to what we might expect. We gradually realized that they also didn’t have a treatment plan, other than hoping for the best. As far as Joseph was concerned, Judy and I were going to become the closest thing to experts anywhere around.
Eighteen months later, he still could not even crawl. We’d heard virtually no speech, presumably because he’d spent almost all of his life up till that point crying. To say that Judy and I were frantic would be a gross understatement. However, we intended to find a way of helping our son.
By that point, his doctors had long since grown weary of our demands for guidance. They didn’t know what to do, other than to suggest sedation for him and counseling for us. We rejected both of those ideas. Then, with Judy leading the charge, we began talking to alternative providers.
When Joseph was two years old, that crying was pretty much a thing of the past. Also, he had finally begun crawling. We stayed very busy implementing a controversial home therapy program, motivated by our optimism that he would eventually catch up with his peers and be able to lead a normal life.
Subsequent victories came slowly. He took his first steps at 39 months of age and became a confirmed long-distance walker over the next year. He could swing by his hands from playground structures, do somersaults, read single words—but these things came slowly, and as time passed the milestones were further and further apart. And speech, probably the most important goal of all, remained the most elusive. He did bless us with a few words, but over time he spoke less.
Looking back, I have mixed feelings. There is no doubt that our efforts resulted in Joseph enjoying a quality of life far better than anything he would have had if we had not fought for him. We were right to trust our instincts when the authorities had no answers.
On the other hand, I regret the fact that he did not achieve the cherished objective of total wellness. His continuing disability is such that he cannot hold a job, live independently, marry, or even tell me what he’s thinking.
Still, when I talk to younger families today, I do recommend swinging for the fences. I believe in hanging onto extravagant goals for our kids. We may not achieve everything. Heck, we may not achieve anything. But isn’t it better to know we tried? In my old age, I can take comfort in the fact that Judy and I did everything we knew how to do for Joseph.
But let’s take the opposing view and question this more deeply. How much should a parent or loved one do before acknowledging the reality that a chronic condition is never going to go away completely? There are significant costs and sacrifices involved in doing what we did. Judy gave up her career altogether. My career pretty much went on hold for several years. And we made mistakes. One mistake was allowing ourselves to become alienated from the professionals. Over time we acquired an us-versus-them attitude that prevented anyone on their side from helping us, even if they tried.
Going it alone is risky. Judy became so worn down by a multitude of daily frustrations that she eventually became very ill. When Joseph was nine years old, she died. I believe her death then could have been avoided, if we had been able to maintain a healthier emotional outlook.
If it were possible to relive those years, and make a few changes, perhaps a better outcome, for all of us, would be possible. Pondering this, I decided to put our story into a book that others might read and learn from.
We cannot know in advance the extent to which a disabled child can be helped. The only way to find out is to try. Like most serious endeavors, the undertaking is likely to be difficult. But I absolutely believe, based on everything I’ve seen, that the cause is worth pursuing—by those who will live with the consequences if not also by the doctors who ought to know best.
While we are pursuing it, however, we must also keep this point in mind: If our compassion does not include ourselves, its effectiveness will be limited.
Stephen Gallup is the author of What About the Boy? A Father’s Pledge to His Disabled Son. More information is available at fatherspledge.com.