When a blog topic occurs to me, I let it stew for a while. Sometimes weeks. Then I write it in one go, editing ruthlessly along the way. This blog is not a day-to-day journal – more a collection of essays. So perhaps a little snapshot of our ‘real lives’ is in order. [Photo above: [...]
Archive | family RSS feed for this section
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 [...]
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 [...]
email letter to my family
hi everyone, not all of you know owen had surgery yesterday for removal of the intrathecal baclofen pump; in case news traveled (and also of course to update you), the surgery went well and owen is doing fine. it was good timing to remove it – there was a large amount of spinal fluid accumulating [...]
summer camp
(My poor little blog. Best water it before it curls up and dies altogether.) A happy post for a change: Owen was at summer camp for the past two weeks at a joyful little place called Adventure Valley. AV is not specifically a camp for children with disabilities; it’s a private, non-religious day program in [...]
brothers
Owen came home from the hospital almost 3 weeks ago, after a 5 week stay. Following are photos of his homecoming with Angus.
Flickr
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.