Today is the beginning of a hard journey for me. It’s an annual journey, begun on July 20 for the past 10 years, and it began with the shocking news in 2007 that our beloved daughter Katie was going to die. It was the end of treating the cancer and hoping for remission, and the beginning of hospice care, and the hard work of acceptance. As Paulo Coelho writes in The Alchemist, “Once you get into the desert, there’s no going back…And when you can’t go back, you have to worry only about the best way of moving forward.” On July 20, we had no choice but to move forward, all the while wanting nothing more than to go back – back to the days before Katie’s diagnosis in October of 2006 – but that way was no longer available to us. We were taking the road which no one wants to take.
Supporting her as she prepared for her death, and preparing myself, was the hardest work I’ve ever been asked to do as a mother. It was harder than the hardships in the hospital, supporting her while she suffered the ravages of chemotherapy. It was even harder than waiting through her 18-hour surgery (and that was truly terrifying). This was harder than anything else, because we didn’t want the outcome – we wanted to fight against it – but to fight, at this point, meant to invite further suffering for Katie, and we were not willing to do that. So we had to begin to let go, to stop fighting, to abandon our hope that she would survive, and begin to hope and work for a peaceful, pain-free, fearless death, held in love.
I see this day each year as the beginning of a journey into a dark tunnel. I emerge from the tunnel into the light after August 16, but from now until that day, I am working silently to not re-live the trauma of those painful days…days of letting go, holding Katie’s grief with open arms, feeling my own pain, witnessing the devastating advancement of the disease as it robbed her of the use of her legs, and saying all that needs to be said, as well as “goodbye,” as lovingly and graciously as possible. It’s impossible to ignore these memories, but I try not to allow them to paralyze me.
For some, the anniversaries are no worse than any other day surviving the death of someone we love. For me, the anniversaries are seared into my being as signposts, as tatoos. It’s been 10 years since she learned that she was going to die, and we learned it with her. Ten years since the dear people at Seattle Children’s Hospital, who had done all that they could for her (and us) had to face us, and impart the knowledge that there was no more to do to save this precious person whom they had come to love. My heart goes out to all of them today.
My heart is also with our family and community, who rallied around us as soon as they heard the news. We were held and supported through these days in ways too numerous to recount here (it’s all in my book, Because of Katie).
I’m moving slowly right now, and it’s a necessary adjustment – to bear the weight of these days, like a heavy backpack. Painting is going in fits and starts, but it brings solace. Exercise helps to prevent stagnation. Summer sunlight reminds me it isn’t all darkness, but a chiaroscuro life we live.
In watching the movie, “The Way” a second time, I heard Alanis Morissette’s song, “Thank U” anew, taking in the lyrics as if I had never heard them before. I’ve been listing to it (and painting to it) on repeat, and am offering it to you as gift, as prayer.