The following is a response I entered to the above question on Quora.com.

For about half my life now I have wanted more than anything else to help my son, who was born with a poorly understood developmental disability. I have never accepted the notion that he was somehow “meant” to lead a circumscribed life or that anyone could be ennobled by that.

At first, I was appalled to discover that not only could the doctors not help him but they showed little or no curiosity even in whatever it was that had gone wrong. (First unpleasant lesson (relearned many times since then): Trusted experts and authority figures will let you down.)

Later, I found alternative sources of help that, when coupled with enormous effort on the part of our highly motivated family, did provide the little fellow some options in life. But ultimately those resources proved disappointing as well. (Second unpleasant lesson: Don’t expect life to follow the trajectory of an uplifting movie. Uplifting scenes, yes, but nothing approaching feature length.)

I had been taught, and believed, messages such as this one: “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you” (Luke 11.9). My son’s mother and I asked, in every way we knew how to ask. We sought and we knocked. And while we were doing that, our son lost ground. To top things off his mother died, too.

Now, all this is not entirely a tale of woe, because good things have happened along the way as well, arguably even as a result of my son’s disability. But according to my own perspective, promised blessings have not materialized, which points to some very fundamental misunderstanding.

I am still trying to grasp the meaning of hardship and disappointment. In itself that’s a captivating quest. But answers are elusive and many people presuming to provide them do more harm than good.

What about the boy (WATB)? 29 years on, I am also still trying to understand the underlying cause of my son’s problem, motivated by the idea that it might then become feasible to treat it more effectively. This year it looked like an answer was at hand, but that now appears to have been a false lead. I blog about these dead ends, but that accomplishes nothing for him.

I have seen this cause — helping my son and ideally in the process making the way a little smoother for others in comparable
situations — as the purpose of my life. It’s a cause I’ve not been able to ignore. But given the degree of ongoing frustration attached to it, I feel more confusion than it seems I ought to at this stage.

Maybe confusion is good. I sensed rather early on that an easy answer to all this would have resulted in my becoming opinionated and insufferable (as, apparently, are some folks who think their having achieved greater success means others are at fault for not doing likewise).

So I personally can live with confusion. But WATB?

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