A boy who came back: the near-death, and changed life, of my son Max

https://www.theguardian.com/lifeandstyle/2025/may/24/the-boy-who-came-back-the-near-death-and-changed-life-of-my-son-max

by ljf • 1 year ago

50 5 1 year ago

theguardian.com

liamwire• 1 year ago

What a harrowing account. Incredibly moving, and evocative of many thoughts I’d long since forgotten, having grown up alongside multiple children with cerebral palsy, early enough to not think anything out of the ordinary of it at the time. Wow.

ljf• 1 year ago

Was a hard read this morning, but one I found amazing in so many ways. I was holding my breath as I read it.

insane_dreamer• 1 year ago

Exceptionally well written. As the parent of a young disabled child myself I especially appreciated this bit of honesty:

accounts I have read from people with disabilities and their parents: would you undo it? In one sense, it’s an idiotic query … If I could press a button that made Max’s life easier by granting him everything he has been denied, I would do it in a second.

For some reason there is this social pressure to express “I wouldn’t trade it for the world because he is perfect just as he is”. Yes he is perfect in his own way, but the idea that you wouldn’t trade it for perfect health is BS.

The other thing that struck me is how many idiotic things people say to parents in these situations. (We haven’t experienced that though, I guess we’ve been lucky).

AStonesThrow• 1 year ago

Takeaways from this:

- I'm not sure whether the headline was manipulative, but I expected some sort of miracle healing story where the "boy came back" by recovering 100% after the brush with death. As the narrative ended, I became irate that "changed life" meant living with the subsequent impairments.

- Nodding at the comment about "lest we try to finish the job" because of the various scandals accusing parents of the hoax "shaken baby syndrome" or turning them the wrong way while they slept

- Reminded again that Dr. House and Doc Martin are pure fiction, and NHS docs can't diagnose their way out of a paper sack -- another imaginary "SIDS" and even this time we have "SIDS without the D but call it SIDS anyway because we don't really care how it happened if it weren't criminal malevolent parents".

- Empathized with the perspective of the utterly bewildered naïvete of an obviously devoted and sensitive husband-father. He's thrust into a medical emergency unprepared and trying to deal with screaming, uncertain futures, a conga line of health care professionals, and the machines they wield, and the promises they can't make.

bradknowles• 1 year ago

With regards to cerebral palsy, my mind always goes back to Chuck, a guy I knew in high school in 1983-1984. His case was pretty severe, most people couldn’t understand him when he talked. He was able to drive his motorized wheelchair pretty well, but unless you looked closely, it wasn’t obvious how he did it.

Chuck was a bit older than most of the high school kids, due to his challenges. I think he was something like 27 at the time. But he was also the best programmer I have ever known.

We had Apple ][+ and Apple //e hardware in our computer lab, and one was set aside for his personal use. It had a special hardware adapter over the keyboard so that you couldn’t accidentally press two keys at once.

Watching Chuck write a program was wild. His hands would wave around in the air for a minute or so, and then somewhere in there you would hear a “chunk” sound. That sound was him hitting a key on the keyboard. He had a 100% success rate of hitting the key he wanted, every time. Because editing a file would have been too painful for him.

Chuck’s programs were also perfect. They did exactly what needed to be done, no more and no less. And you couldn’t shorten them by a single character, because otherwise the functionality would have been lost.

Chuck spent a hell of a lot of time thinking about his programs before he ever sat down in front of the keyboard. By the time he got there, the program was already completely written in his mind. And it was completely debugged. I think he was the only person to get a perfect score on every test and every program in the computer science class that year.

Over the time I knew him, it became easier for me to understand what he was saying. Towards the end of that time, if Chuck and I were in the room at the same time, his assistant was able to even take breaks to go to the bathroom. Otherwise, she had to be with him 24x7. That wasn’t something that I intentionally enabled, it just kind of developed that way, but I did find out later that she appreciated the time that we were together.

I think a lot of people looked down on Chuck due to his difficulties, but I thought he was amazing. And over forty years later, I still think that he is the best programmer I have ever known.

A boy who came back: the near-death, and changed life, of my son Max

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