Over the past several months, a number of people have told me how strong or courageous I am. I can't say that I feel terribly strong or courageous.
Sometimes I feel as weak and helpless as a newborn. Sometimes I just want to lie in bed and cry... and I do. Sometimes I'm totally confused and overwhelmed. Most of the time I just put one foot in front of the other, pick one thing to focus on getting done and doing it - no matter how slowly. Because the alternative is giving up and sinking into the suffocating dark exhaustion of depression and letting myself slowly die.
Perhaps surprisingly, I don't want to do that. At least not enough to really fall all the way. There are things I want to accomplish, things I want to see, people I enjoy spending time with - that is the light that guides me along this dark path.
Over the past several weeks I've been reading a remarkable series of articles in the Globe & Mail by columnist Ian Brown. He has written very candidly about life with his 11-year old son Walker who was diagnosed with an incredibly rare genetic disorder: Cardio-Facio- Cutaneous Syndrome. The three lengthy articles cover everything from the family's years of chaotic home life, the dizzying turnstile of medical appointments, the agonizing uncertainty of every care-giving decision, all punctuated by episodes of pure transcendent joy and wondering glimpses of life's true essence.
I'm sure that many people have told Walker's parents Ian and Joanna that they are courageous and strong, they are. But I know that they probably don't feel it most of the time. Most of the time, they're just trying to do the best they can - for Walker, for their daughter Hayley, for themselves.
Most of the time, that's what being strong and courageous is all about - just trying to do the best we can.