Something’s been bugging me about that recent visit with the neurology team at Toronto Western. Bugging me enough that I have spent some time reflecting on exactly what it was. I realize now my dis-ease has nothing to do with the conversation/meeting itself, but rather the very nature of the referral and its implications. When [...]
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Shout out to my sistah
I tend to blog in a fairly isolated way – I think stuff and then I write it down. Many of my fellow bloggers (who actually bother to read this blog – thank you!) are far more engaged than I am. The truth is, I do read what they write. I hop from blog to [...]
Revelations
My grandmother died recently. I met her once or twice when I was a young girl, but only knew her through photos and rare stories through my parents. She was elderly when she died and while her death was certainly mourned by her children, grandchildren and great-grandchildren, I don’t believe anyone thought it a tragedy. [...]
“Ridiculously unreasonable, unsound, or incongruous…”
Owen is a sweet, endearing boy by all accounts – which I think is the perception we all have because he smiles a lot and has a beautiful face. But it’s not like he makes me tea or tells cute jokes at the dinner table – Owen actually doesn’t, can’t, do anything. And not only [...]
This is Not a Blog
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: [...]
Keep Calm and Carry On
As Owen gets bigger and more wiggly I can sense the forthcoming horrific decisions that are coming my way. He is not that heavy yet (48 lbs) nor is he that tall (drat, I forget… he’s short) but consider his size when he’s doing his best imitation of a greased seal and you’ll perhaps appreciate [...]
I must have been a Buddhist in a past life.
I have spent the past 11 years fending off misconceptions that I must hate my life and that I must be angry or depressed about my son. Often those misconceptions come from people without direct experience with disability – sometimes I explain, but mostly I just continue to live my life as authentically as possible, [...]
Impolitic
(I got it! It came to me this morning. And it’s so very unCanadian.) I am not going to help you through your discomfort and make it all better. I can’t. And I don’t want to. ‘This’ is not just happening to me – you are here too, seeing, reacting, feeling. Something is happening to [...]
My Theory of Relativity
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 [...]
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 [...]
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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.