A journalist recently interviewed random local teenagers to learn a little about their lives and ambitions. The result doesn’t contain any particular surprises. Regarding the future, one gal hasn’t decided yet whether she’ll be a surgeon or a photographer for National Geographic. Another expects to play pro soccer. I like the outlier who acknowledges a possible destiny in which she’ll live “in a super crappy neighborhood and work somewhere like Target.” Regarding current reality and the usual land mines threatening their age group, one smiles and says, “We have the tendency to make bad decisions.” The article goes into some detail on those decisions if you’re curious.

None of that is surprising, as I said. But being the father of a teenager, I ended up checking this against the daughter’s perspective. I mean, HER buddies aren’t dropping acid at school, are they? She pointed out that things are probably a wee bit different for the neighborhood we inhabit and the school she attends.

Let’s hope so. Song Yi’s insistence on moving to this suburb a decade ago was based on the ambition of benefiting from a high-end school district and association with children of overachievers, presumably to compensate for the fact that our own achievements are modest. In other words, it was an investment in the kids. I’ve written about that previously (for the same newspaper).

I do think that, thus far, our daughter has been at least partially sheltered from the worst hazards. Our little guy appears to be in a very good place as well.

So, on days when life feels a bit overwhelming, when all I see is a series of hoops to jump through, offering no reward beyond simple maintenance, I remember to be grateful. The kids are doing well, the younger two at least. That means so much to me. I’ll write more about Joseph next time.

It’s all about the kids now. For most of us, there comes a point in life when more personal longings begin to lose urgency. Instead, we think increasingly about the next generation. I see this occurring in my friends as well as myself, and realize I’ve seen it in older people all the way back.

This is the point at which any value in our accumulation of experiences and life lessons lies in whether it can empower young folks. Sure, given more bandwidth I’d still gladly apply resources to doing something for myself. However, in weighing the potential effects on my own life versus younger lives, the younger lives win out every time.

You might say I’m neglecting my own prospects in order to boost those of the next generation. Even my daughter would call that sad. A friend close enough to speak frankly might call it a denial of the reality of my own needs in favor of a gamble. To that I would say this is my conception of parenting. It is a gamble, every step of the way.

By definition, then, the outcome is uncertain. Peace of mind requires flexibility, sometimes a huge amount of it. Never mind lofty goals like becoming a surgeon, sometimes it’s too much to ask even to be able to have a conversation with your kid, or see him. For me, peace of mind comes in doing what I can.

I hope it’s understood that the goal is not to raise little hothouse orchids. They’re going to have to find their way in the real world. Even in best-case scenarios, assuming I jump through every parenting hoop flawlessly and they dodge all known land mines, they’ll encounter unforeseen trouble soon enough.

But I recall something my dad used to say, when I was little: If I don’t spoil him, who will? The process of getting young people ready for what lies ahead amounts to a nice, long metaphorical hug, maintained for as long as you decently can.

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?

A great many years ago, when I was studying physics as an undergraduate, and also coaxing a girlfriend to come visit for the weekend (honesty compels me to admit that she wasn’t really a girlfriend but rather was a girl I hoped—unreasonably, as it turns out—to win over as a girlfriend), I calculated the approximate gravitational attraction between her body and mine, first with her at her own campus a couple hundred miles away and then at the blessed moment when we would be in close proximity to each other.

Schoolwork compelled me to do such calculations anyway. This exercise was simply an effort to make the practice relevant.

According to my figures, the second value was somewhat greater than the first. That is, the force of attraction between us did increase a bit when we were together, but not so much that you’d notice. I mean the numbers were infinitesimally small.

Calculations really weren’t necessary to arrive at that conclusion. The girl did come to visit, but only I think to confirm that the suspicions she already held about me were correct. Despite rudimentary stirrings of romanticism, I was a tedious geek.

That old misadventure came to mind today, prompted by a silly poem addressed to an insignificant grain of sand (… Is this the life that you had planned? That there’d be jillions just like you? …). It started me thinking about numbers outside normal experience (the size of a grain of sand, the number of such grains in the world, etc.) and from there (inevitably) back toward a subject closer to my heart, the combinational possibilities in mixing and matching genetic information from one generation to the next and specifically how in the blazes my son Joseph ended up with a developmental disability that even now remains unexplained.

When Joseph was a baby, a neurologist told me to accept his condition because, as he put it, “it just happened.” I hated the ease with which a man of science could so easily shrug off a young patient as a victim of random chance, without even attempting to understand, much less treat, the problem. So I rejected what he said. In those days, Judy and I thought it was likely a case of birth trauma—brain injury perhaps due to prolonged labor and vacuum delivery. We were embarking on a years-long home campaign to help him overcome that injury, and of course knowing what we were up against could have affected the choices we made, and our chances of success.

Not that those chances were defined any more accurately than the problem itself. Geeks presume that expressing something in numbers is a way of enhancing control over whether we’ll get the outcome we want, be it a new girlfriend or a healthy child. In this case, however, there was no handy formula for quantifying those odds.

Over time it became apparent that they must have been very long odds–maybe one in whatever number of universes would be required, based on random chance, for this one to turn out as it has. And I might as well confess to having no better grasp of figures like that than anybody else. (I was always impressed with the image of a hundred bottles of beer on the wall.)

But I suspect that really knowing what such numbers mean would result in inaction, and absolute zero chance of success. This is where people’s romantic impulse has value—the thing that prompts us to throw ourselves into impossible causes. After all, some folks do win the lottery. Some families working very hard with a disabled child do achieve life-changing breakthroughs. Heck, even in our abysmal ignorance, Judy and I won victories with Joseph.

And for those who don’t get the prize (we didn’t, certainly not to the extent we wanted), well, there’s comfort in knowing that it’s not such a bad thing to expend yourself on a noble cause.

Still, it can only help to have a good solid grasp of what you’re up against. And that’s why I continue the pursuit, even at this late date. Next up for Joseph is a relatively new test called whole exome sequencing.

And then “someday“…

This blog post also appears in The San Diego Reader.

Apparent coincidences are one of the big mysteries in life. I know our brains are wired to look for patterns and connections where none may exist, and then to apply significance to them. But if we do find significance, might it not be real?

Here’s an example:

This morning, when a friend told me of her plans to resume creative writing after she retires (because life is just too hectic now), I offered a gentle warning. Years ago, my mother used to promise herself and others around her that, come some future date (her next birthday, for example), she would accomplish a certain worthy deed (usually it was a promise to stop smoking). In due course, that date would come and go and we would find that, mysteriously, the goalpost had shifted to another point that was again safely off in the future.

My warning was gentle because I’m as big an offender as anyone. I don’t know how much of this is caused by our inner wiring, as opposed to the kind of culture we live in, but everybody seems to imagine that in the foreseeable future things are going to become more orderly, more fulfilling—that we ourselves will become happier and more successful. This transformation will occur as soon as [fill in the blank].

Then we carry on with the same activities as before. Somehow nothing much changes, but (like my mother) we tweak the parameters as needed so that it appears we’re still on track.

I see a coincidence here because, after parting from my friend I went online, opened my email, and saw a message from the leader of a local writers organization. It began:

Many times I hear writers say, “You know, I think I’ll be happy when…”

The email continued with pretty much the same admonition I had just handed out, focusing on happiness itself as opposed to the other objectives we imagine as being prerequisites to that happiness (getting published or whatever).

As a writer, I would be happy if What About the Boy? went into a second printing, if the screenplay for it went into production. Much more importantly, as a father I would be ecstatic beyond words if some actual remedy were to result from the current renewed push to understand Joseph’s condition—which is the problem underlying creation of both book and screenplay.

My own choices and actions may have no effect on accomplishment of these particular targets. Despite everything I do, they’re still pipe dreams.

But hopefully that doesn’t mean there can be no happiness. And hopefully reaching for happiness while goals remain unattained is not mere denial. I trust that it isn’t.

The above email recommended a certain Muppet video (having to do with “the Snowths”) as a reliable switch to banish unhappy thoughts, and that reminded me of something that has had the same effect on me.

Please click the image below and see if it doesn’t give you a nice warm feeling.

“So, tell me. What brings you here today?”

“Well, my son here is 29 years old, and he doesn’t have a diagnosis. My understanding is that the state of the art has now advanced to the point where it may finally be possible to get one.”

The intake consultant looked incredulous. “Twenty-nine, and no diagnosis?” She watched him for a moment. He had appropriated the paper tape measure she’d used to measure his head circumference and was now obsessively waving it about in the air. “What’s wrong with just saying he’s autistic?”

“Some people have said that. It’s a convenient handle. But it doesn’t explain anything. No interventions for autism have ever helped him. The treatments we’ve pursued all these years have just been based on guesswork. Some doctors have said categorically he’s not autistic, and a few have pointed out some subtle physical traits that suggest genetic involvement—a deletion or duplication somewhere.”

As often happens, I was saying more than this lady wanted to hear. She attempted no further conversation and just entered a few bits of data into the computer system before leading Joseph and me to the examining room.

We were at Cedars-Sinai Medical Center in Los Angeles, having driven up for the day from San Diego in hopes of finding a genetics specialist willing to provide the diagnostic test that (for reasons I will never understand) the clinic in San Diego had failed to run. Almost four months had passed since Joseph’s wasted appointment there, during which time I’d fallen back into the aggravation and alienation I’d known when he was a baby: You doctors don’t find his problem interesting? You have no curiosity? You see no reason to follow through on your own promises? You don’t return my calls? Why did you go into this line of work in the first place?! Well, never mind. Watch us go elsewhere.

(I’d thought I was now too old for the kind of adventure described in my book, but maybe not. That emotional track is still well polished.)

Okay, okay. Bernie Siegel has explained, and given examples to show, that potentially irritating setbacks can actually be blessings in disguise. If the doctors at Cedars-Sinai help Joseph to a greater extent than would have been possible in San Diego, then ultimately it’s good that events conspired to take us up there.

And that may be. I struggle with that kind of thinking, however. God’s plan for the universe might turn incompetence, evil, or tragedy into good, but my point of view is constrained by experience.

Joseph’s thoughts on this (or any) subject are, as always, less accessible. I would gladly give this space over to him if I could. A point of view does appear to be in there. The social worker who saw us next and the physician who followed both perceived it. For example, after hearing us discuss him for a few minutes, he became visibly unhappy. Who wouldn’t? How’d you like to sit in the presence of people discussing your pectus, hypotelorism, and short fingers?

Responding to his discomfort, Dr. Saitta switched to a more generalized topic, comparing a person’s genetic code to a set of encyclopedias. At the time Joseph was born, genetic testing would have revealed whether a volume from the set (say, the book for the letter M) was missing, or if an extra copy were present. We’ve known that isn’t the case. The new test I’ve been pursuing can show if one line of type is missing anywhere in any volume. There is further (more expensive) testing that might spot errors at the word level (e.g., fudge instead of judge). The doctor said spaces between the “words” are her discipline’s next challenge. Work remains to be done, but she seems to be on the leading edge of it. We’d come to the right place.

We got the blood draw, and in a couple weeks should have the result.

I don’t know if anything can be done in terms of therapy that might improve Joseph’s options in life. That’s a separate question. But it seems to me that an understanding of what we’re up against would be a really good first step.

After 29 years of messing around.

It’s understandable that even specialists don’t know everything about this stuff. But I will never understand the continuing habit of so many providers to treat patients the way Joseph has been treated time and again. Their only redeeming quality is the ability to energize me for renewed efforts. Which occasionally lead to someone like Dr. Saitta.

Years ago, my wife Judy and I had a baby with problems. Something bad must have happened to him prior to and/or during birth. We didn’t know that at the time. I mean, he looked great! But as an infant he cried pretty much nonstop and vomited frequently. And then he began missing developmental milestones, such as learning how to crawl.

Judy and I wanted to make things right. Who wouldn’t? The little guy depended on us. And by the way life at our house was not much fun. So we wasted no time in taking him to doctors. We found it a little confusing when those doctors simply told us to wait.

Waiting’s hard when a child shrieks all day and night. Judy and I were new at parenting, but surely this had to be outside the norm. How did other parents handle this kind of situation? Judy thought some people in our shoes might even hurt their kids. There were stories like that in the news. Lacking a better idea, she phoned a child-abuse hotline.

“What do people do?” She demanded. “What do they do when their baby keeps on crying and crying and crying?”

The counselor said it sounded like a medical problem and we ought to be seeing a doctor.

After the first year, the many doctors we continued seeing began to change their message. Instead of asking us to be patient, they now said we had to accept reality. Our son would always be different.

What condition did he have, then?

They didn’t say.

He still cried, still threw up, remained immobile. Would this be his future indefinitely? Were we seriously expected to accept this on his behalf?

Actually, we were. One doctor said to park him in day-care and get on with our own lives.

But why? What caused this?

“It just happened.”

When pressed, another pediatrician mentioned the existence of unconventional therapies. “But I’m not going to talk about that,” she added. “You’ll need to ask other parents.” Those other parents put us in touch with a provider who had a partial answer. Joseph had been hurt during delivery, she said. His skull had been compressed and could not expand. He was in pain.

The fact that she was able to alleviate his discomfort, and stop the crying, led us to believe that she’d been at least partly correct.

And later, when another alternative resource showed us how to get him crawling and then (at 39 months) walking, we felt sure that we were on the right track. And that the right track did not involve mainstream providers.

I began writing about the adventure, but the story took a less-upbeat tone as it continued following our trajectory. Years were passing, and Joseph hadn’t acquired speech. Oh, there were a few startling instances in which he said something—and then looked as surprised as we did—but even those tapered off.

I should add that there has never been doubt regarding Joseph’s own desire to have normal abilities. He was our active partner in the cause.

But Judy and I couldn’t ignore accumulating side effects of the effort (we were the ones doing the therapies, all day, every day), and the ongoing frustration, money worries, exhaustion, and loss of perspective. For her, all this led to illness, eventually to death.

And Joseph remained far from where he needed to be, if he was ever going to have any real options in life.

Belatedly seeking balance, I traveled, remarried, fathered and raised a couple new kids (blessedly free of developmental issues), and revived long-forgotten interests such as music.

All that helped me, and hopefully the others around me, but accomplished nothing for Joseph. And so I couldn’t stop seeking providers who might have ideas. Incredibly, I still didn’t know the cause of his condition, or how it prevented him from acquiring skills. That meant everything attempted was a crapshoot (as it had always been; we’d just been lucky with those early efforts). Since interventions still tended to involve significant effort and financial outlay, my determination began to resemble a gambling addiction.

But what’s the alternative, when you see your first-born son sliding backwards? He has begun losing important abilities that I thought were solid!

Recently I took him to a genetics specialist (the only one in town) who said a new diagnostic test would most likely finally identify the cause, at least, of our troubles. For unknown reasons, the illustrious doctor would not perform that test. But gatekeepers bring out my inner bulldog. Joseph and I now have an appointment with specialists in another city, and if they don’t work out we’ll look further.

And when I know what he’s got, that will be one step along the path.

It’s easy, this time of year, to find articles discussing the best books published over the last twelve months. (Here’s an example.) I can’t write those articles, since my reading tends to hone in on certain subjects, and in any event more than a year is often needed for a title to make its way to the top of my queue. So although the following aren’t necessarily new, these are significant literary works that I was glad to read in 2013. If you discern a common thread running through these summaries, it’s not accidental. (My previous year-end lists are here and here.)

As a Child: God’s Call to Littleness, by Phil Steer

This is a very comfortable, conversational presentation of an idea that doesn’t get enough attention, i.e., the admonition by Jesus that a believer’s proper relationship toward God is that of a child toward a loving parent. The chapters are short and easily digested, which seems appropriate. A scholarly or theological treatise would hardly fit with the theme, although the author does remain closely grounded via a multitude of references to Scripture. Pulling off what he has done is quite an accomplishment, I think. Steer insists that the call to be childlike does not mean abandoning the things we must do. He explains that using the parable of the talents, which had always been obscure to me. As I understand it now, the message is that, when given a challenge, we should try. Not trying, for fear of failure, would be worse than failure itself. There’s no escaping some degree of failure, just as a child learning to walk cannot avoid tumbles. But children don’t give up. Children take chances. We should, too.

The Man in the Empty Boat, by Mark Salzman

Salzman is a writer whom I would particularly enjoy meeting and getting to know. Perhaps that’s because, as he mentions in this memoir, his characters, real and fictional alike, are “tormented by the gap between who they actually are and who they had hoped to become.” It’s likely that everybody in the modern age experiences that disconnect to some degree. I certainly do. In this book he shows explicitly that it’s true of himself. His achievements, while pretty darned impressive from where I sit, do not impress him. To some extent, that’s due to having set rather lofty goals. He says, regarding his adolescent ambition of attaining true enlightenment: “Wise people adjust their expectations. They stop comparing themselves to Buddha or Batman and trust themselves to achieve their personal best. Not me; I was not going to capitulate … I was not going to be a quitter.” That is precisely the way I felt about the campaign I waged for several years to rescue my little boy from a mysterious developmental disability. Didn’t matter how difficult the task became, or how many discouraging comments I heard. I intended for us to reach our objective! Popular culture encourages that kind of thinking, through all the familiar stories about the underdog who finally prevails against overwhelming odds. And I’m not prepared to say that’s a bad thing. We should hitch our wagon to a star. But somehow we also need to find a perspective that allows us to survive reality without coming unglued. I think that challenge is what Salzman’s writing is mostly about.

The Beach Beneath the Pavement, by Roland Denning

Bernard Hawks is “the journalist famous for not believing in anything”–other than, perhaps, that “only mad and dangerous people believe in anything.” Since he himself believes nothing, it’s of no consequence to him if his readers fail to take his writing seriously. Therefore, his style (when he bothers to write at all) is to be intentionally outrageous and offensive. But at the beginning of this delightful novel, there’s an explosion–presumably a bomb. It goes off in an ad agency, and by chance Bernard’s latest column had said something to the effect that ad agencies should be bombed. This naturally leads to the first of several uncomfortable visits from a slimy police detective, who’s sure that if Bernard is not a culprit he at least knows the responsible party. The delivery is rather amusing. I chuckled all the way through. But it’s also (I think) a serious inquiry into the nature of reality as it’s experienced in modern civilization. “How do you operate in a world where there is no longer any belief?” Or where the only belief is modeled on a faulty cause-and-effect narrative. This is really good stuff, in my view, the product of considerable thought and cleverness. It deserves to be read.

We Need to Talk About Kevin, by Lionel Shriver

I found my way to this novel via a profile on the author that appeared in The New Yorker. Shriver’s reported focus on unmet expectations/thwarted possibility sounded very much in sync with one of my own preoccupations, i.e., the problem is not merely whatever bad thing has happened, but also the good things that might have happened in a banished parallel life, that in fact did not. Although I plan to read more of her work, I started with this story in which a mother is looking back over the chain of events that led to her son becoming an unrepentant mass murderer. It’s a horror story—the most articulate, thoughtful, and convincing horror story you could ever want to read—in that it proceeds with an implacable inevitability to the known conclusion. Obviously, the parents—highly educated, self-aware and sensitive—wanted something much different. Now, in letters to an absent husband, the mother is carefully parsing events and her own motives and actions in relating to Kevin as he grew up. She mentions (unnecessarily) that “the last thing I’ve wanted is to whitewash my own part in this terrible story,” and because of her honesty some readers see the mother as being despicable. I see a yearning to pursue the truth no matter where it leads. (And by the way, as a memoirist I’m sympathetic to that.)

In the Shape of a Man, by Paul Clayton

This novel portrays a problem that plays out in two neighboring homes in a modest San Francisco suburb. In one, Allen Collins feels tired from working long hours at a meaningless job and uneasy about indications that his wife has begun rejecting (hopefully not abusing!) their adopted son Reynaldo. Allen tries to tell himself that they have a good life together, but he knows something is very wrong. He knows there will be no improvement if he does not take steps. On the other hand, every course of action available to him has unattractive costs. And so the steps he takes lead only to a nearby bar. Down the street, a young adult named Rad is brimming with energy but has no good outlet for it. He could be a great professional skateboarder, if only he could get a sponsor. Failing in that, he turns his focus to community activism, and then to a seductive girl. Meanwhile, Tawny, the woman with whom he has been living, has missed her period. All these people are exposed to others who appear to have more stable and satisfying lives, and who offer points of reference, if not actual guidance. But outsiders can do very little. The choices each of us faces are ours alone. In the Shape of a Man is a story about ambivalence, about finding distractions and dodging responsibility because nobody sees a clear reason for doing otherwise.

36 Arguments for the Existence of God: A Work of Fiction, by Rebecca Newberger Goldstein

In the hands of a gifted writer, even dry philosophical debates from bygone centuries can make delightful drama. This is a case in point. The drama here is in the life of Cass Seltzer, formerly a pre-med student who changed course in pursuit of a more authentic life, becoming over the next two decades practically the only academic specializing in “the psychology of religion” and ultimately authoring a book on the subject. Its publication happens to coincide with a renewed public interest in a debate that had supposedly been settled 300 years earlier, and consequently he has become a minor celebrity, much to the dismay of colleagues who view the very question with contempt. Cass is a good-hearted, earnest seeker after truth and peace, astonishingly resilient in the face of disgracefully mean-spirited and pretentious professors, colleagues and even lovers. He never feels anger on his own behalf. He’s simply in love with life, with existence, with being here, and I had absolutely no trouble seeing everything through his eyes.

The Uncanny, by Andrew Klavan

This is the fourth Klavan title I’ve read, and it helps clarify his focus. Previously I’d thought Klavan was motivated mainly by politics. His Empire of Lies has a celebrity figure, coddled by the media and academe, who spews cultural poison. The Identity Man has a despicable demagogue en route to high office. And having seen a few of Klavan’s short written and video efforts, I knew that he attacks the same phenomena in real life. But, fairly early in The Uncanny, one of the characters comments that the problem goes way beyond politics. The real adversary is naked evil, recognizable by what it does to us (i.e., never mind good intentions, if something causes genuine harm then it’s evil). Klavan’s other novels provide glimpses of the kind of evil that makes you recoil in horror or disgust, but here it takes center stage. Life is very much an imperfect proposition, which we see in the conclusion of this one: The heroine’s father has just died, and the man she now realizes she loves is dying as well. But at some point there is danger in attempting to improve on or overcome basic realities.

A Few Good Men, by Sarah A. Hoyt

Our current world structure has long since crumbled (presumably because the population split into groups who nurtured grievances with one another), and what has risen in its place is a worldwide feudal system under the not-so-benevolent rule of about 50 elite “Good Men” (hence the book’s title), each in charge of his own domain, and all of them more or less in league to continue the exploitation of everyone else. The story is told from the point of view of Lucius, the heir of one of those despots–who is also essentially an outsider, learning the true lay of the land along with the reader because he has spent the last 15 years in prison. Lucius has always known about the existence of a generally despised network of people who cherish long-dead ideals (along the lines of individuals having innate rights, as opposed to existing to support their betters). But then it turns out that his father’s retainers are closet members. Having just ascended to power, he isn’t predisposed to accept their point of view. Sound interesting? It’s sci-fi but also the best overtly political work I’ve read this year.

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.

Tianze Ni is the son of a Chinese friend who lives in the UK. Several months ago, his mom Nina allowed me to share a heartbreaking poem she’d written, a very frank exploration of her experience of raising, and loving, an autistic child.

We adults are certainly entitled to our feelings, opinions, hopes, etc. I have made mine known. But I’ve always wished it were possible to know more about the view from the other side. How do disabled kids see things? What does life mean for them?

That’s why I titled my memoir What About the Boy?, and it’s why I was glad to feature a book of artwork created by another disabled boy. And for the same reason I’m more than happy now to share the following creations penned by Tianze:

My wife Judy had been married before we got together. That prior union was tumultuous and short, and the only thing she took away from it was the memory of some hurtful words her first husband had said during one of their arguments. He’d predicted that she would make a lousy mother.

I don’t know what prompted him to say that. I knew her during the time they were married, and was aware of nothing that might have supported his prediction. Maybe he was simply trying to hurt her.

Because I knew him as well, I doubt he meant to inflict lasting harm. He was no more malicious than anyone else, and at one time or another probably everyone utters mean, divisive or negative words.

That’s what I want to write about, because despite the old epigram about sticks and stones, words can indeed hurt.

A disabled child

A year or so after their divorce was final, Judy and I married. And then, some years after that, we had our only child, a boy we named Joseph.

Looking back, I realize that Judy had not been eager to become a mother. We’d seldom discussed the notion of having babies. We concentrated on our careers, on fixing up our house, and on pasttimes such as community theatre and square dancing. Then one day, inspired by the sight of happy families playing with their kids in the park, I suggested that we go ahead and see what parenthood would be like. An expression of panic crossed Judy’s face; but when she saw that I was serious, she nervously agreed that it was the right thing to do. Within an hour, we were both completely sold on the idea of bringing a new life into the world.

Long before we had any physical evidence that he was coming, both of us loved our child and couldn’t wait to see him.

Joseph entered this world with problems. He couldn’t keep his food down. He cried almost constantly. He grew older but did not achieve any of the usual developmental milestones, such as crawling. Despite multiple evaluations and tests, the doctors did not understand what was wrong. Therefore, they also did not know what could be done for him.

My response in that frightening first year and a half was to continue taking Joseph to his appointments, ever hopeful that the doctors would eventually identify the cause of his distress and send us to the right specialist. I trusted that somebody, somewhere, would have the expertise to get our little guy fixed up.

Judy lost patience with that. She believed, correctly, that time was of the essence, and that the longer Joseph waited for help, the less effective any help would be. Since mainstream medical professionals were doing nothing for him, she began exploring options with alternative providers. At first, I objected. I believed anyone not in the mainstream must have been excluded for good reason. But my misgivings were no match for her determination.

One line of inquiry led to another, and before long Joseph was the patient of a kindly old osteopathic doctor who specialized in the arcane science of cranial therapy. This treatment finally put an end to Joseph’s irritability and frequent vomiting. In turn, the outcome put an end to my doubts about Judy’s course of action. Thus encouraged, we found our way into an arduous and controversial home therapy program that offered hope of overcoming his developmental delays.

Years passed, and Joseph achieved some wonderful milestones. The most obvious was finally learning to walk independently. But he never attained the total wellness that we had pursued so earnestly. For reasons that are still unknown, he never acquired the ability to talk.

A quest for answers

One bit of wisdom the doctors had always stressed was that parents of kids who have developmental problems should not blame themselves.

Even so, Judy and I could not avoid examining our backgrounds and our selves for an explanation of our son’s condition. We found little. Still, in weak moments Judy confessed to me that she worried about her first husband’s comment. She feared he had perceived something that we did not. She dearly wanted to try again, to have another baby, but was terrified that there might be something about her that would afflict any child born to her.

I can only guess at the emotional depths to which this unresolved question drove my wife.

However, if any blame were to be assigned, the person most obviously free of it had to be our son. He’d done nothing to bring about his misfortune. Therefore, even after exhausting all the good ideas for helping him, we still felt we had a duty to keep trying. There would be no further children in our family, but Judy and I meant to do anything possible that might enable Joseph to move another step or two along the way toward independence.

For example, just as Judy had led the charge in finding alternative healthcare providers, she also began exhorting me to recognize the importance of speaking words in support of desired outcomes. Any time I became discouraged, she cited Scripture, urging me to “call things that be not as though they are.”

The words we speak, she said, have enormous power to hurt or to heal, because our subconscious mind hears and acts on them. The best use of our words, she insisted, is to give encouragement and comfort, and to remind the hearer that things can be better.

We’d spent a great deal of time over the years discussing what was wrong; but now, she decided, we needed to guard what we said. We needed to focus on what was right. Joseph desperately needed to hear it, and so did we.

Perhaps it was too late by then. Perhaps constructive language could not reverse a process that by then was already well under way. Perhaps understanding these things intellectually did not cancel out what occurred on an emotional level. At any rate, instead of seeing improvement in Joseph, Judy herself fell ill, and two years later she died.

Our little guy was nine years old when he lost her.

As for the ultimate cause of his mysterious condition, it’s possible to look for explanations where they don’t exist. One doctor had told us that, whatever had gone awry with Joseph’s development, it was something that “just happened.” As for our response, I do think that our love for him provided ample motivation for the choices we made. There’s no need to attribute our efforts to help him to a sense of guilt. On the other hand, I have no trouble believing that Judy was also motivated in part by a desire to prove, once and for all, that she was a good mother. Even if she was the only person needing that proof.

If that was the case, the effort cost her everything.

Sometimes we can only speculate. I don’t know why Judy died at an early age. But it would be a good policy for all of us to consider the possible consequences of our words before we speak them. Lives may be at stake.

This article was originally published by Utterly Frank.