Category Archives: Penthe


I wrote this in response to an anonymous doctor posting in the comments at Terrible Palsy. This doctor was exasperated that some parents of children with impairments become so upset with the way doctors treat them and their children that they start to feel anger toward all doctors. Parents start to assume the worst, that the next doctor will be as cavalier, uncaring, insensitive, impatient and as badly informed as the last. We all want good doctors, and many of us are lucky enough to find them, at least some of the time. We all want to know that the doctors care for our children as much as we do (which is perhaps impossible). We want to know that doctors are not writing our children off, dismissing them as too hard, too unlikely to improve or otherwise not worthy. Also, doctors sometimes hurt our children – and even if it’s for the best it can be very, very hard to forgive. Especially as the child watches the parents letting the betrayal and pain happen. That’s hard to recover from; it can take years.

I find it hard talking about doctors. Some are clearly doing their best, and I admire that. Some are very honest about what they don’t know, and I admire that too.

What I don’t admire is a specialist who tells the parents one thing, and then writes something completely different in the referral to a different specialist. I don’t admire doctors who haven’t read the file before they see the child. I know doctors are busy, but what’s the point of seeing the kid if you haven’t bothered to find out what’s wrong? My son’s condition is complicated and there’s a lot of history. I don’t admire doctors with no curiosity. I don’t admire doctors who tell you everything is OK, and then when there is a medical disaster basically say ‘I knew this would happen’. That doctor nearly felt the edge of my not admiring him on the end of his nose, I must say. I don’t admire doctors and nurses who ring up to complain that you have missed an appointment (that you rang them about as soon as you could) because your child was in intensive care. I don’t admire that they then send a threatening letter about non-compliance with every new appointment card. 
I don’t admire surgeons who suggest surgery that has dramatic possible complications by saying, Oh, it usually turns out pretty well. I don’t admire doctors who ask the same questions every appointment, not because they are checking progress but because they have forgotten everything about your child and did not read the chart.

I admire doctors who talk to my son like he is a human being. I admire doctors with a sense of humour about the crazy things kids do and say. I admire doctors who listen. I admire doctors who understand that our life is not all about making doctors feel better about themselves, because our energy is pretty much consumed with making our son feel better about himself. And with not becoming so exhausted that we lie down in the middle of the street.

I admire doctors who deserve it, and have been lucky enough to come across many who do, and a few who resoundingly don’t. I will love the doctors who saved my child’s life until I die, and that love does positively colour my reaction to other doctors. I admire doctors until they prove that I shouldn’t. And then I don’t.


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