No commentary yet. Below is the piece I wrote for Owen’s funeral, which was read aloud by our dear friend, Jen Weiser. Jen was one of Owen’s first caregivers and the first person, possibly even before me, to delight in … Continue reading
I have had only one nightmare about Owen, ever. It creeps into my waking mind occasionally and really freaks me out. It’s a winter night – dark, cold and snowy. Owen is missing. I don’t know where he is. But … Continue reading
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 … Continue reading
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 … Continue reading
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 … Continue reading
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 … Continue reading
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 … Continue reading
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 … Continue reading
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 … Continue reading
(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 … Continue reading
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 … Continue reading
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 … Continue reading
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 … Continue reading
(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 … Continue reading
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 … Continue reading