Because it’s in my nature to do so (that is, because writing is the way I make sense of the world), I began journaling about my son Joseph within a few hours of his birth. That pastime gained importance when evidence suggested the little fellow might be having unusual problems, and especially when the experts I turned to for answers had nothing to offer.

I remember specific instances of scrawling observations, thoughts, and hopes back in those early days. Being an optimist, I expected the storm clouds to clear (the alternative being unthinkable): His issues would turn out to be not so critical, or—worst case—some specialist would appear on the scene with a remedy. Time passed but remedies proved scarce. I continued advocating for my son in ways that made sense at the time, and likewise continued writing about it. My memoir What About the Boy? was the eventual result.

I said many times that the writing (and subsequent efforts at burnishing, publishing, and promoting WATB) kept me sane and healthy, not to mention energized and very clear about my mission. There had to be at least some benefit of the endeavor, since as my wife Song Yi has often noted it accomplished nothing for Joseph.

Meanwhile, he had entered adulthood. I always kept an ear to the ground for possible new interventions that might enhance his life, but when they never led to anything I belatedly and mournfully faced up to reality.

Journaling continued only in occasional blog posts. Branching out, I tried my hand at verse (such as this) and a few modest short stories (such as this), and especially detailed critiques of the books I read (such as this). You can see from these examples where my focus remained. Looks like I’m stuck on one topic.

To belabor the obvious, all this prating is just documentation of my experience. I thought verbal output might improve matters, but, regrettably, it has all been about me. It has at times amounted to an excuse or an apology offered to myself for not being effective. The memoir’s title was a protest or an acknowledgment of that limitation. Turns out protest too accomplishes little.

Joseph’s point of view is still not easily accessible. Many’s the time I have wished I could spend a day perceiving the world as he does. What if we could trade places! I’d be willing.

Currently, I find myself journaling again. As noted in previous posts on this site, my boy has been ill since early 2016. His doctor accomplished wonders in maintaining the quality of his life during this time, but that gentleman now says the end is near. A hospice provider has been called. So, just as in his earliest days, I’m recording impressions, emotions, thoughts—simply because that’s how I try to cope.

My words are not adequate to the task. In just one short email, Joseph’s aunt nailed the situation better than I could: “It seems so unfair that this has happened after all of your care, your efforts, and your deep love. It is a stab to the heart.”

But again, that’s us talking. That’s our take on it. Although life has dealt Joseph a hand of cards that seems very bad, I, who know him better than anyone, have no idea what he sees in that hand. He can do without the physical pain, for sure. There was more than enough of that earlier, and soon it may be coming back. His inability to communicate hampers our efforts to alleviate it. But aside from that, I look at Joseph, at the person he has always been, and I see a little child. We know what Jesus said about little children. At no time in his 33 years of life has Joseph willfully behaved badly. He has never attempted to hurt anyone—never. He has always tried his very best to be cooperative and to follow directions, even when he didn’t much like them—always.

The truth of who he is puts all my words to shame.

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