so much lemonade

See, when it starts to fall apart
Man, it really falls apart.
-The Tragically Hip

Today I’m digging around for all the books that give me comfort my time of need:  Anne Lamott’s Travelling Mercies, Elizabeth Lesser’s Broken Open.  I ate some carbs.  I went for a crunching walk on this sunny fall day.  This helped too.

I’m recovering from yesterday’s crying hangover.  This morning I painstakingly typed out a letter of resignation from my paid work position, after a particularly hard meeting with my boss.  I even watched this deodorant commercial for inspiration, but it didn’t help me one bit.

I’m moving back exclusively into the freelance-consulting world.  In hockey terms, I’ll be a free agent as of November 4.  There was a slippery slope starting with my husband leaving his working-from-home position last March for a ‘must show up in person’ one, and my subsequent leave of absence this summer.  This led to the difficult decision that I need to transition back to working from home to be a support for our youngest son, who happens to have a disability and who happens to be 13, too old for childcare, not able to get special needs childcare funding, not able to be left alone, in a school district that has significantly shortened teaching hours for kids with disabilities (pick up at 2:30 pm because they don’t have funding for Educational Assistants?  REALLY CHRISTIE CLARK?).  Well, I’ve ranted about all this crap before.  My boy needs me and that’s enough.

In my resignation letter, I added this punch:

The reason for my resignation is that I require that my work be flexible and based from home to support my youngest son. This is directly due to the lack of family support that exists in British Columbia for parents of children with disabilities.

This made me feel marginally better, although I know that nobody cares. It really bothers me that my choice to be in the paid workforce has been taken from me.  However, this also makes me acutely aware of my own privilege. I am in a relationship where my partner makes a decent income, so I have the option to move back into freelancing.  What of people who don’t have this luxury?  This is how the government forces people who have disabilities or those who are caring for people with disabilities into poverty.  How is this ok?  This is not ok.  What am I going to do about it?  I don’t know.  I guess I will have some time on my hands to figure that out.

But for a while, I am going to hang up my supermom cape.  Someone else can take over changing the world because that turned out to be rather short-lived this time around. I still hang tightly onto the belief that we will change the health care world only through love and compassion.

I’m working on a long-awaited book project.  I’m slowly getting more known in BC health conference circles, and have a number of scheduled speaking engagements.  I might eat more sushi and take more baths.  Importantly, I’ll pick my boy up from school, and we will stop at Tim’s by the high school for iced caps, where the ladies remember his order.  He’ll talk to me about his day as we zoom back home up the mountain before he catches himself chatting with his mother and announces to himself:  SILENCE AARON.  We will catch up on Born This Way episodes on PVR and eat popcorn in bed while we wait for his dad to return from his work. We’ll putter around in the kitchen, listening to soul music and preparing supper, where he has been crowned my capable sous chef.

The system has thrown a number of hard, rotten lemons at my head and I’m bruised and worn. But from that, I’m trying to make some pretty sweet lemonade.  I believe with all my heart that our best revenge for daring to have a kid with a disability is to orchestrate a happy, well-lived life – systems and society and governments be damned.  Love to all the families out there struggling to gain the same balance.  Know that you are not alone.

5 thoughts on “so much lemonade

  1. sue robins says:

    Yes, how ironic that we moved from a Conservative government in Alberta to an even MORE Conservative government in BC (masquerading as the Liberal party). The month after we moved, Alberta went NDP. Politics aside, much of these ‘system’ problems are due to mean policies being written by bureaucrats who are totally out of touch with the real world of families and people with disabilities. BC is rampant with impossible wait lists, an addiction to stupid IQ testing, barriers to access, inequitable funding and a massive private system in both education and health. I had no idea how progressive Alberta’s social services policies (in particular) were until we moved here. Anyhow, we made our own bed and we gotta lay in it, but that doesn’t preclude the need to help make things better – if not for Aaron’s generation, then the next. When mama bears band together…well, just about anything can happen.

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