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 · 3h 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.
AStonesThrow · 24m 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.
insane_dreamer · 31m 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).
- 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.
> 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).