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 [...]
Filed under: musings on February 20th, 2010 | 3 Comments »
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 [...]
Filed under: family, musings on January 30th, 2010 | 3 Comments »
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 [...]
Filed under: medical, musings on January 14th, 2010 | 4 Comments »
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, [...]
Filed under: musings on December 20th, 2009 | 15 Comments »
(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 you [...]
Filed under: musings on December 9th, 2009 | 2 Comments »
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 write, [...]
Filed under: musings, social on December 5th, 2009 | 12 Comments »
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 [...]
Filed under: family, medical, musings on November 7th, 2009 | 5 Comments »
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 [...]
Filed under: family, musings on October 15th, 2009 | 2 Comments »
(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 are exposed [...]
Filed under: musings on October 10th, 2009 | 4 Comments »
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 diagnoses (or other [...]
Filed under: carecamp, ideas, musings on September 17th, 2009 | 5 Comments »