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: Owen [...]

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 standard [...]

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 hard but not gruelling.  [...]

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’ means [...]

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 I [...]

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 around [...]

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 [...]

brothers

Owen came home from the hospital almost 3 weeks ago, after a 5 week stay.  Following are photos of his homecoming with Angus.