Thursday, 18 December 2014

Why I'm Not Ready For Christmas - A Personal Update

The lead-up to this Christmas has been out of the ordinary for our family.  Some traditions have been kept: our Christmas tree is up and my freezer is full of baked treats.  Like all seasoned caregivers, I'm used to planning.  I begin my holiday baking on quiet weekends in late October.

But I haven't done all my gift shopping yet and that's unusual for me.  Buying last minute or visiting those I love in a rush is not my style, usually.  My comfort zone is to throw away my watch and visit friends and family over the holidays, feeling relaxed, knowing that the chores have been accomplished well in advance.  No stress.

This year has been different for a couple of reasons.  I've moved from writing and doing some local caregiving advocacy work to joining a couple of boards and committees that require travel and many meetings.  Don't get me wrong - I love this work and it feels terrific to have a voice on policy matters that affect families giving care. This week, I'm travelling three days out of five.

This is how I described the satisfaction I derive from activism in my book, 'The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving':

I have always advocated strongly for whatever I thought Nicholas needed at each stage of his life. But I have only recently begun to understand what this advocacy role has provided to me in return. Having a baby whom I could not feed or soothe easily made me feel sometimes like a desperate failure as a mother, but becoming an expert on therapies and political advocacy strategies helped me to experience a sense of strength and control.

Rosalyn Benjamin Darling points out in her research on parents of children with disabilities: “When parents continue to encounter needs that cannot be met by existing societal resources, they may embark on a prolonged career of seekership. The goal of seekership is normalization, or the establishment of a lifestyle that approximates that of families with only nondisabled children. Seekership results in advocacy and activism when certain situational contingencies or turning points occur.”27 Such activism Darling calls “entrepreneurship.” One has to be socialized into the role of entrepreneur, and socialized I was. The confluence of the changing role of women, opportunities for our higher education and the booming economy all provided fertile ground for the flourishing of my skills as an entrepreneurial activist. Darling continues: “For most parents, active entrepreneurship ends after they reach what they consider to be normalization,” while for some it continues to “crusadership.” These are the parents who continue to work for disabled children and adults even when the needs of their own children are met.28

Darling is right, at least as far as I am concerned, that activism offered me a sense of power, control and usefulness. Activism was and continues to be a core part of my sense of being a good mother. The opportunity to pursue entrepreneurship in the form of activism did afford me a sense of normalization and provided me with a sense of being a good mother to my son. It still does. 


For most of my adult life, I did almost nothing but look after my family.  Now, I'm drawn by other work that has impact for younger families and people looking after their elders. Working outside my home is new for me and it feels strangest at Christmastime.  And I'm discovering that balancing work and caregiving is a tricky business.  December 24th is my Mom's 93rd birthday.  Natalie and I will travel to Montreal to celebrate with her while Jim stays home with Nicholas.  Christmas Day, we'll all be together.  If the food, the gifts, the preparations aren't exactly the same as they've been other years, that's fine.  We have love in our family and we have each other.  Crusadership can wait until after the holidays.

Merry Christmas and Happy Holidays from our home to one and all!

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