I am watching my boys growing and I am stunned at how quickly their childhoods are giving way to eventual adulthood. I get ahead of myself a bit perhaps – they’re only 9 and 11 – but they’re over half way to what we typically think of as ‘grown up’. So I feel entitled to [...]
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Compassion Fatigue
(Photo: not always a poster boy!) [Apologies in advance to those I offend with the following post.] A friend of mine used a term the other day: compassion fatigue. A numbness to the horrors of a particular situation, usually due to overexposure or experience. It’s a risk to which all front-line healthcare and caregiver professionals [...]
HealthCamp
I attended a fabulous un-conference* yesterday about healthcare. I knew in advance I would want to lead a session (anyone can if they like) and I mulled over 4 topics: finding ways to extract and package parent knowledge to better inform healthcare practices finding ways, through opt-in social networking strategies, to connect people with similar [...]
They’re almost always wrong
(Wild Water Kingdom. Last few days of summer holiday.) I was told a few weeks ago that Owen’s hip was completely dislocated, as evidenced by an x-ray. (He’s been getting x-rays every 9-12 months for the past few years, to keep an eye on his pelvis and legs.) One leg has become progressively shorter than [...]
Commencing Phase 2 (or is it 3? 4?)
(photo: Owen’s 11th birthday. With Angus.) Here’s the truth of the matter: I don’t know anymore. I don’t know what. I don’t know how. I don’t know if. I don’t know when. I don’t know why. But I used to. What changed? My guess is that until now, I thought my challenges were kind of [...]
Life as the Decider.
(photo: summer fun at the cottage) I have been thinking lately about my role as Owen’s primary caregiver and advocate and the process involved in making tough medical and care-related decisions. I’d always thought it was quite simple: do what I think is right given what I believe to be true at the time. ‘Right’ [...]
Is this the time I will look back upon and say “I had a feeling”?
(Another random photo of the boys – eastern Beaches in Toronto.) As I mentioned in my last post, I’ve received a few messages from readers sharing their stories about their own children (presumably all with disabilities) who have died – some recently, some long ago. I was moved and honoured to receive these stories, and [...]
perspective
Owen is not the same as he was before this recent hospitalization. He hasn’t returned to his pre-crisis state and I am slowly coming around to the idea that this is simply the new reality – shifting from describing him as ‘broken’ or ‘changed’, to just acknowledging what is. And moving forward from here, not [...]
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Recent Comments
6th Jul 10
The word 'random' strikes me. As actual for the reality.
5th Jul 10
That's an enlightening and sobering post. I keep thinking about whether we would have done the surgeries Ben had in ...
4th Jul 10
Thanks for your comments Pamela and Claire... I frequently hear stories of patients (and parents) dissatisfied with their encounters with specialists ...
3rd Jul 10
Wow, what a difficult post. I've read it over a few times and I get it. We are, ...
3rd Jul 10
Wow. As someone also navigating the Ontario medical system (with a younger child), I really appreciate the insight of ...
4th Jun 10
awesome photos. Very excited you got away to NYC. I would have a very hard time consenting to treatment that I ...
3rd Jun 10
Hey Louise, I would certainly guess it's been done more in the US - but everything at this point is anecdotal. ...
3rd Jun 10
That's very disappointing -- especially because of the incredibly vague responses re risks and benefits. It's easy for a surgeon to ...
2nd Jun 10
"I guess that saying is applicable here: when all you have is a hammer, everything looks like a nail. ...
10th May 10
I agree! And appreciate the honesty in both of your blogs.