Tonight's picture was taken around July 4th in 2009. That holiday weekend we took Mattie with our friend's family to a local resort. The thinking was to try to give Mattie a more normal experience away from the hospital and usual medical routine. Of course for us, we were still pushing meds, flushing his lines, and maintaining his daily routine but in a different location. However, the reality of childhood cancer is you may move locations but the problems follow you where ever you go. Mattie's issues were very pervasive and deeply emotional as this photo may indicate to you. Peter and I tried our best to cover the issues from those we were with, but it wasn't easy as Mattie was not happy being around the other children and was deeply depressed that weekend. The more time he spent with others who were not like him the deeper he fell into depression. After this scene here, Mattie grabbed a hold of me and basically told me he wanted to leave immediately. Not just to return to our hotel room, but to leave altogether and go home. Which is what we did. Of course I did not report this on the blog that night. Which I will write more about below.
Quote of the day: We do not remember days; we remember moments. ~ Cesare Pavese
Last week when we met with a Washington Post reporter, we were asked to provide her with key dates from the blog that she should refer back to and read. Mostly likely dates that we felt were significant to our story and that would help give context to our story as to why the Foundation developed a mission focused on psychosocial care.
I spent some time last week delving through the blog, going through the course of a year's cancer journey. Which I have to admit was very emotional. I remember aspects of the pain, but reading the day to day journey brought me right back to 2008. Peter and I know many of Mattie's key dates in our heads as they will forever be ingrained in us, however, reading through my descriptions of some of these dates and the occurrences of what happened on each of these days really caught my attention..... almost six years later. Why? Not because I couldn't believe we survived this! Not because I couldn't believe that I forgot what transpired! ON THE CONTRARY!!! What disturbed me was HOW I REPORTED THEM!!!!
In some cases, as I read through the blog, I noticed that I did not report things as ACCURATELY as they happened. Now you could say that maybe my memory has failed me and what I wrote in the blog is really what transpired! Sure that could happen.... but that isn't what is the case here. I know darn well what happened in each instance.. as Pavese's quote so aptly points out tonight. I remember moments and episodes in time as if they are trapped in my mind! I can play them back over and over. Therefore when I read how they were reported on the blog, I knew I wasn't reporting them accurately. But I guess because so many years have GONE by I forgot WHY I chose to report these episodes this way or even why I had to do this!!!
I surfaced this issue with Peter because it truly bothered me. I view the blog as an excellent resource for psychosocial stories and yet some of my best stories and examples are NOT captured on the blog. They aren't captured because at the time I had to protect us, our community who was supporting us, and I also knew that our medical team who was treating us was reading the blog. So I had to be careful how and what I was writing in some instants. When you think about the intense stress we were under, the fact that I had the where with all to even give this thought was amazing in and of itself. I knew that what I wrote could have ramifications on us and how Mattie would be treated.
I will give you an example, if you are confused by what I am talking about. In the first week Mattie was treated, his psychosocial staff did not like my emotional response, or LACK thereof to Mattie's diagnosis. They wanted to see me crying and hysterical. I was too composed and focused for them. They also did not like the fact that I wouldn't leave his side and was always in his room. They took it upon themselves to deem that I needed a break. So one day, one of the social workers (not the social worker assigned to work with our family) met with me and walked me over to the campus hotel and checked me into a room, despite me refusal. She told me I needed space from Mattie and I had to take care of myself! It was almost hysterical..... I had to care for myself while my son is getting his first round of chemotherapy! Are you finding this as funny as me???? She wasn't listening to my needs, nor did she make the effort to understand the closeness Mattie and I shared prior to his cancer. If she had, she would have realized there would be no way I would leave him alone in a hospital, to manage chemotherapy! In any case, after she checked me into the hotel, I thought about it for two minutes, got very angry, and then returned the key to the hotel and never returned there. I then reported the social worker to the head of oncology and demanded an apology. I was livid. I felt as if no one should be judging me, my family, or worse my emotional reactions. If they wanted to see an unstable parent...... she saw one in full force. I remember this episode as if it were yesterday and yet I did not report any of it on the blog. All I wrote in that night's posting was that...... we had a lovely visit from a social worker today, who was concerned about us and offered us a hotel stay on campus.
I now recall that I used to joke with people that the blog doesn't always tell the whole story. It does give a good picture of the hell we lived through, but I did have to spare many of the truths because they were too harsh for people to hear. All I know is Mattie's cancer was traumatic for us, and the blog can remind me of the memories of certain events, occasions, and experiences. The blog can instantly take me back in time, as can a photograph, and the details do not need to be presented to me, they are just ever present in my mind.
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