Wednesday, September 19, 2012Tonight's picture was taken in May of 2009. This picture captures the antics of Mattie's physical therapy sessions! The three women you see in this photo were all on the same page about designing physical therapy sessions that motivated Mattie, encouraged him, and inspired him to use his legs. In the photo with Mattie is Linda (Mattie's Child Life Specialist), Anna (in purple, Mattie's physical therapist), and Meg (in white, Mattie's Child Life intern). As I mentioned last night, Meg was key to our therapy sessions. What was transpiring here was Meg was winning the race, and Anna wasn't going to let Meg beat Mattie, so Anna literally jumped in front of Meg and tried to knock her down. Honestly Mattie's sessions were better than watching TV, the dynamics were real, full of life, and with the good intentions of helping Mattie. That was always paramount. Walking for Mattie was VERY, VERY difficult and painful. He got easily winded, easily frightened to move, and could easily get depressed and shut down. Which was why these antics became vital, they made Mattie temporarily forget his fears and instead focus on the goal of walking to beat Meg.
Quote of the day: What lies behind us and what lies before us are tiny matters compared to what lies within us. ~ Ralph Waldo Emerson
Some times I get into the kick of reading several books at the same time. This can be delightfully complicated at times, especially when books have multiple characters. Recently my friend and colleague, Denise, sent me a book. We had met over lunch a few weeks ago, and at lunch she was describing a book about a woman who unexpectedly lost her significant other. The way Denise described the book caught my attention, especially since the book is not about a woman who lost a child to cancer and it is not a "how to" book on grief, which drives me absolutely BONKERS! The book Denise sent me is entitled, This I know, Notes on unraveling the heart by Susannah Conway.
As Denise was describing this book to me, she mentioned that she saw similarities between the author (the book is an autobiography) and myself. As I am now reading it, I do see several connections. I am not sure if the connections are a result of our tragic loss, or whether Susannah Conway and I are both drawn to the beauty of art, words, and human connections. It is hard to say, but I do think we may have been predisposed to these forms of expression, and our losses just gave us a push. In one of the chapters I read today I came across a passage that 100% resonated with me. It was as if Susannah sat down and was analyzing why I write Mattie's blog. Here is an excerpt from the book:
It's a blessing to find writers whose words speak for us when we are mute, the scribes who record our collective experiences and mine their own lives so we can better understand ours. If your calling as an artist is to write, it's a vocation that pays out twice: first to you as the detective unraveling your heart and then again to the reader who consumes your work. We don't write to be published --though publication may come -- we write to make sense of the noise in our heads. We write to record memories and share what we know. We write to feel less alone, to confide our fears to the page. Imagine a world without love letters, without birthday cards and dedications. Our truthfulness can change a life -- if not someone else's then at least our own. In a world swirling with thousands of languages, there is space for everybody to tell their story. Photographs, paintings, and music carry the essence of our hearts, but it's the words that tell the secrets.
Each day I begin a blog posting with a quote. This gets at what Susannah describes as "writers whose words speak for us when we are mute." In fact there are some nights I sit at the computer, unsure of what to write. It is usually in those moments, that I turns to quotes, and it is through the words of others that I can get inspired. The quotes give words to the thoughts swirling in my head. As I have expressed before on the blog, I write each night for different reasons. The primary one is that the blog keeps Mattie's memory alive, and it has become my surrogate child in a way. Yet in the midst of my writing, as Susannah implies, I would like to hope that our words do change lives. Perhaps someone who is grieving is reading this blog and just for one moment says.... "yes, this person understands me, she gets it, and I am not the only one feeling this way." I would like to think that my pain and endless words each night are being heard and do make a difference to someone besides myself.
I went to see my friend Mary, who lives in an assisted living facility. Mary was thrilled to see me and had moments in which she could actually talk tonight. I haven't experienced this in a while, so this was a wonderful treat. Mary told me she has been thinking about me, and praying for me. Over dinner she asked me why our boys had to die, and what was God's plan? She was referring to Mattie, her son, her husband, her brother, and her cousin. It was an excellent question, one which I told her I had NO answer for, nor could I even fathom up a response. Because from where I am sitting, there is no better place for Mattie, other than with me. In fact, I have interacted with several other parents who have lost children, and most react the same way to the trite remark of "He is in a better place." Note to self, this platitude needs to be removed from the English language altogether! It brings NO peace to the bereaved!
Tomorrow, Mattie Miracle will be on Capitol Hill attending the annual Childhood Cancer Caucus in honor of childhood cancer awareness month. I am signing off for now and I hope to share with you my thoughts from the Caucus on Thursday.
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