So much had changed in a year and so much remains painfully same.
As I sit here on a bright Halloween morning the pumpkins on our doorsteps remain intact. Tomas will wear his sloth costume tonight when we go for our daily evening walk. I will leave very little candy in a bowl at my doorstep, as I have given majority of it to the house on our street that fundraises for Crohn and Colitis Foundation.
Since last fall I have been greatly struggling with my mental well being. Winters are always tough on me, but since last fall my body started experiencing the effects of constant joint overuse. The endless muscle and joint pain are so ever present I no longer register them. After fighting my province’s social support system I received funding to hire a helper, for 3 hours a week. You moms out there know how little can be accomplished in 3 hours. But 3 is better than 0, so I must remain grateful. However thanks to our “double shitty luck” administrators felt sorry for us and accepted Tomas into a very exclusive club nobody longs to belong to, The Canuck Place Hospice.
This single institution has saved our family. Thanks to the respite stays they provide for children with complex needs my husband and I will have the 6 hours of me time we couldn’t dream of last year. Having a hope that you can experience 20 nights a year as a “regular person” is unimaginable luxury and the single ray of hope we survive on.
So yet again we are bracing ourselves for the dark months of painful reminders of the joy we lost and continue losing. But one thing becomes more and more clear to me. Personal growth never happens when life is “easy”. I have done way too much growing in the past three years. I never wanted to be this “inspiration in facing such a tragedy”, but here I’m. And as every post must end on a positive note I will give myself the proverbial pat on the back. I seldom acknowledge my victories but here we go
- founding member and secretary of CureGRIN Foundation
- successfully advocated for better medical supplies for Tomas
- became Resource Parent for the BC Family institute
- found resources for a local family struggling with insufficient support from their medical team
- participated in 3 research projects, one of which already gave us better treatment options for Tomas
- stayed and kept alive, fed, cleaned and emotionally supported my family
Not shabby I’d say 😉
So dark months, here I’m, with my flashlight of eternal optimism and conscious denial, I’m ready to navigate the darkness.
ktojoy 