Sometimes I cheer people up. Not because I try to, but because sometimes people will compare their own stresses to what they assume are mine and will be drawn to ‘count their blessings’. I suppose I should live and let live, but I am drawn to comment… (I find this type of post hard to [...]
Funding and Support
(a walk down mid-town Toronto’s beltline path…) Among us parents of children with disabilities who qualify for government support, there are several hot topics that come up in conversation – even when we’ve just met. The biggest one, always asked with a slight hesitation, is ‘How much are you getting?’. I think the hesitation comes [...]
Do Not Resuscitate
I had one signed this week. (The form is signed by a physician, not the parent.) After months of sitting on the document, I decided to finally just do it. It wasn’t actually a fraught decision; I have always known my own limits for what interventions for Owen are acceptable and what are not. The [...]
Good enough
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 [...]
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 [...]
Friends?
(Great Wolf Lodge – Owen, Angus, M and T) When Owen was younger, my biggest wish for him was to have friends. I created inclusive play environments, sent him to programs that could seamlessly accept him and his support workers and spoke positively to other children about how Owen was really just like them underneath. [...]
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’ [...]
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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.