Tonight's picture was taken in July of 2003. Mattie was a year old, and that was his first trip to the Outer Banks of North Carolina. I have always been in love with lighthouses, and we took Mattie to Corolla Light that summer and naturally I wanted to climb to the top. Peter and Mattie went together, and I honestly do not know how I did not lose Peter that day from the heat. It was sweltering out, in the 90s with high humidity, and Mattie was too young to climb. So he rode in a carrier on Peter's back. As Peter still tells me, "THAT WAS ONE LONG CLIMB!" Needless to say we all made it to the top of the lighthouse, and Mattie loved the adventure and the climb.
Quote of the day: Given a choice between grief and nothing, I'd choose grief. ~ William Faulkner
Those closest to me have told me how impressed they are that I have made a start at trying to reorganize my home life. That may sound so simple to my readers, but it really isn't. My level of chaos began as soon as Mattie was diagnosed with cancer in July of 2008. At that point, mail began to pile up, toys coming from the hospital and being delivered to our home piled up, Mattie's clothes, medical supplies, and hundreds of his video tapes surrounded us. I guess what I should remind you is that I am not talking about one of two toys accumulated during a hospital visit, I am talking around 50 to 100 new items each time. Imagine 50 to 100 new items entering your home each week of your life for 15 months, and also imagine not having the time to address the accumulation because your priority was caring for a sick and dying child. You learn to live with clutter, you learn to overlook the chaos, because the sheer life and death situation before you is all encompassing, overwhelming, and requires every fiber of your being to manage. I try to remind myself, as I look at the chaos around me that there is an explanation for this, that this isn't me, but this is the result of a great life tragedy. This is a very real and tangible reaction to cancer! Cancer puts your life on hold and you basically stop living. Things are no longer important, all that is important are meeting the basic biological needs of your family, and all the other hierarchical needs (safety, love, belongingness, self-esteem, etc) are simply dispensable.
It is very hard to move from the world of cancer and death back to the living. Because living requires a different set of priorities, a different point of view, and most of all it requires interacting with others. I have always been an extroverted person, however, with Mattie's illness and certainly his death, I have become more introverted, and I need much more alone time. Sometimes when interacting with others I see just how different my life is and how I no longer fit in. Those moments of realization are challenging for me, because it only highlights Mattie's loss in my life.
I had lunch with my friend Christine today. Some of you may recall that Christine is Campbell's mom, and Campbell was one of Mattie's close friends in kindergarten. It at times seems absolutely surreal that my life once involved driving back and forth to school, caring for a child, organizing playdates, and being a mom. Being a mom was an identity I had for seven years, and sometimes now when I am by myself, I find that my mind plays tricks on me, and I wonder if my mom life was real, or is my current life real?! The rational part of me knows that both are unfortunately real, but the emotional side of me is simply confused and horrified at the same time. Christine and I caught up on our lives, we chatted about the holidays, and naturally the Foundation Walk. It is ironic that both of us talked about how rare pediatric cancer seemed to us while we were growing up. In fact, I can't even think of one child I knew or heard about growing up who had cancer. Yet now, Christine and I know so many. It is hard to believe with our advances in medical science that we are still in the dark ages with pediatric cancer. If you disagree with that notion, then I suggest you watch chemotherapy being infused into a child and see its ramifications. If that doesn't do it for you, then add major surgeries to the mix, and I have a feeling you will concur immediately with me.
Today, I had the opportunity to read an article in the January 25th edition of The Wall Street Journal, entitled, "When a friend grieves, how to get sympathy right" by Elizabeth Bernstein. My dad sent me this article, and between the Journal and Time magazine article I reviewed, I see that grief is a topic we struggle with as a society. In particular, we are uncertain how to help and react to someone's loss. The article lists SIX tips to guide us as we assist a friend. They are:
1) Reach out
2) Listen
3) Share a memory
4) Offer practical help
5) Ask before bringing a lot of food
6) Give something that will live on
For the most part the article was helpful because the author interviewed people who were grieving and asked them what specifically helped them through the process. The four things that resonated with me were: 1) avoid cliches when talking to someone who lost a loved one (such as: good things come from bad; what doesn't kill you makes you stronger; he's at peace now), 2) do not claim to know how the grieving person feels, you do not. Don't suggest that the mourner "move on," 3) certain religious condolences can be upsetting (such as he/she is in a better place), and 4) "if you are reaching out or offering help, don't expect a response. Explain that you are checking in but understand that the mourner may not be able to get back to you and so you will call again. Promise to be there in the coming weeks and months. And keep your promise."
The article also touches upon how we sometimes talk about our own grief as we reach out to friends who are grieving. We do this to try to help and let the other person know that we understand to a certain extent what they are going through. However, as the article so astutely says, this method of sympathy can be construed as equating the losses and what this can do is actually prevent conversation. Though I think the six tips are helpful, there are two key components for me that I would add to this list. The first one is that of acceptance. Not the acceptance of the loss but the acceptance of the mourner as a changed person. I can't imagine anyone surviving a traumatic grief and not being altered in some way. Expecting your friend to be the SAME person, or return to the same person he/she was before the death, is not only upsetting to the mourner, but it can also seem disrespectful. As if the person he/she is grieving for was not an important part of one's life. The second component is be a friend. When I say be a friend, I mean more than just "reaching out." I have found several things helpful from my closest friends, and that is emails and text messages throughout the day, but beyond that, it is the level of inclusiveness in their lives. The feeling that my presence matters, that I am an integral part of their world, and that I am included in their activities, holidays, and gatherings. This has been crucial for me, because without it, it would be very easy to get completely sucked up in the loss of Mattie and completely disengage from the world. Friends prevent this from happening, and in many cases are a key protective factor in surviving such a devastating loss.
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