Tonight's picture was taken in June of 2008. A month before Mattie was diagnosed with cancer. Looking like the picture of health and if you look closely he had a STICK in his hands. No nature walk was complete for Mattie without claiming a stick or branch to take home. This set of rocks is on Roosevelt Island and Mattie loved climbing them. It was beautiful to watch that process because when Mattie was very young he needed assistance climbing up the rocks. However, naturally as he grew older, he climbed them on his own and became independent. I wasn't fortunate enough to see Mattie grow up and be independent and become his own person. I only saw glimmers of his independent side but I have no doubt he would have been an extraordinary adult, as he was a child.
Quote of the day: I guess by now I should know enough about loss to realize that you never really stop missing someone-you just learn to live around the huge gaping hole of their absence. ~ Alyson Noel
I had a lovely email exchange today with someone I just recently met who lives in our complex. She mentioned how she feels like she knows me already and yet of course we just met. This is not unusual, I have heard this from several other people who read Mattie's blog. As of July 23, I will have been writing this blog DAILY for five years. With NO breaks! You share my daily highs and lows, you have followed my illnesses and headaches (which are all by-products of grief), and you even come on vacation with me! Hundreds of you still check in on the blog even now, now that Mattie is gone from our lives. I have heard that some of you either start your day with me or end your day with me. Whichever you chose, please know I am honored that you care and continue to read about us and our memories of Mattie. I wasn't sure it was possible to get to know Mattie and me without ever meeting us. However, so many of you tell me this is true, and if it is, then I know I am doing a good job as a writer!
My neighbor and I chatted back and forth today about our health care system. There are so many earth shattering revelations I made while Mattie was battling cancer and dying. The first revelation is that though we live in the 21st century, modern medicine ISN'T so modern especially as it relates to childhood cancer. The second revelation is though doctors and hospitals talk at infinitum about the practice of patient centered care (The Institute of Medicine defines patient-centered care as: "Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions."), in reality it is hard to implement and in many respects patients are not considered part of the care team. I have to admit that if I thought this issue was a problem when caring for a sick child, but it is about 10 times worse as an adult migrating through the health care system.
The level of insensitivities I experienced over the course of 2012 and 2013 with each of my pelvic scans are all noteworthy. Everything from unprofessional oncology staff, techs who don't know what they are doing, and doctors who feel it isn't important to call me with test results. Even after I tell them I have lost my son to cancer and therefore scans make me very anxious. How much clearer could I be???!!! Sometimes I wonder what happens to doctors? Are they desensitized to the feelings of their patients over time as a way to survive in a hospital environment, or is this a trait that is taught and rewarded throughout their entire medical education process? Either case, I have learned that the truly outstanding doctors are able to be competent and gifted in their science, but also are able to relate and talk to their patients. It is the ART of medicine that is truly beautiful and this art means allowing the patient to talk, to feel open to communicating about pain, symptoms, and to become invested in his/her treatment and care. An outstanding doctor will NOT find this threatening. Annoying at times, but not threatening. I do believe that when selecting any doctor (but especially an oncologist) such a fit is CRUCIAL.
I guess what I appreciated about today's dialogue is that my neighbor allowed me to reflect on the fact that Mattie's blog is timely and real. One doesn't need to have a child diagnosed with cancer to relate to my writings. It is through Mattie's battle that I have learned a great deal about health care, even more about caregiving, and of course the battle with grief and the loss of a child. Illness, dealing with the medical field, caregiving, and loss are all universal human issues. At some point each and every person reading this blog will have one or all of them and it is comforting for me to hear that so many of you have gained some sort of nugget of knowledge or understanding from Mattie's story that you have applied to help your own situation.
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