Saturday, July 7, 2012Tonight's picture was taken in July of 2009. This was two months before Mattie died, and before we knew his case was terminal. Pictured with Mattie is Anna, Mattie's physical therapist. Anna no longer works at Georgetown, since, she moved across the country with her husband. Anna is one of the people I truly miss seeing. Anna worked intensely with Mattie and with me, she saw and experienced our highs and lows, and I consider her one of the professionals who was very honest with me about Mattie's physical abilities and recovery after numerous surgeries. Anna had a hard job because she had to explain the reality of Mattie's limitations to me, and yet she also had to tackle these limitations and find ways to rehabilitate Mattie. In essence, we had to teach Mattie to walk again and use his arms. Either one alone is daunting, the combination together was overwhelming. Also factor into this that Mattie was also on chemotherapy and feeling horrific. There were days we all were dejected and could easily lose hope. Yet as a team, our goal was to help Mattie, and as this picture illustrates we were an effective team. With Mattie's stamina we were able to get him up and taking a few steps and using his arms again. Anna was not only a competent professional, but she took the time to get to know Mattie, to understand his fears, and was able to creatively motivate him. As I have written before on this blog, it is the personal connections medical personnel make with their patients and families, which is crucial to recovery. Not all are willing or able to make these connections, but in the end, this is what we as patients remember always.
Quote of the day: We find a place for what we lose. Although we know that after such a loss the acute stage of mourning will subside, we also know that we shall remain inconsolable and will never find a substitute. No matter what may fill the gap, even if it be filled completely, it nevertheless remains something else. ~ Sigmund Freud
Freud's quote gets at exactly what I have been talking about for the past two nights on the blog. Certainly the acute phase of mourning is over for Peter and I, as the shock and horror of what has happened to Mattie and us have been accepted. Nonetheless, our feelings will always be inconsolable, because nothing can fill that void. It seems to me that the voyage to healing involves understanding this rationalization. Which is a huge discovery on my part today. I suppose at the core my very human side has tried to solve things, be pro-active, and find explanations and meanings for this loss. As if there is one!!! In addition to my search for meaning, I also try to find ways to "fill the gap" in my life. I am beginning to see over the last two weeks that this mindset may need to be changed. Because there is NOTHING to solve, NO meaning to this loss, and MOST definitely NOTHING can fill this gap. Instead, all this rationalization can send me spinning around in circles. It is like a puzzle that has no solution, because a key piece is missing! Yet I somehow continue to study each of the pieces I have and try to find ways for it to be put together to form a picture. Which of course isn't logical. By analogy, there are many aspects to dealing with grief that make no sense either. Yet our minds continue to pursue them! So I don't have an answer to any of this right now, other than I am thinking this through.
Today was 107 degrees in Washington, DC, yet despite the weather, we did get out and this helped my mood tremendously. However, for over a week, I haven't been feeling well. I, not unlike others who are contending with this heat, have developed a case of asthma. For me being in prolonged heat and even air conditioning are making me very uncomfortable. I am on all sorts of inhalers, and my lifetime friend Karen, is ready to remotely take me to the doctor to get better relief. Next week, I have all sorts of doctors appointments to follow up on my various other issues and problems that have developed since Mattie's death. My goal is not to add another doctor to my week's agenda.
Tonight I went back to the blog I posted on July 7, 2009. I copied an excerpt from it below. I felt compelled to go back to the blog today. I do not do this often, yet reviewing history helps me understand the profound changes Mattie's cancer has had on my mind and body. Though some of you may have read this posting back on July 7, 2009, this posting is a part of me. It lives within me, and the emotions and fears expressed by Mattie will always be remembered. The powerlessness to help him are ingrained in me, and yet I remember the energy and stamina it took to portray strength and hope to him. So when I wonder why I am a frazzled person, or half the person I used to be....... I don't have very far to look for an explanation.
Posting from July 7, 2009:
While Mattie and I were waiting in the PT waiting area, Mattie turned to me all of a sudden and said, "I don't like myself!" That is an enormous statement, that could mean anything. Instead of placating him or trying to insert my own thoughts into his thinking, I stopped myself, and asked him to tell me more about this statement. At which point he became closed off. However, a few minutes later he went on to say that he has never liked himself. I did not think that was true, so I said did he feel this way always or after he got sick? He admitted to feeling this way after he developed cancer. Then specifically stated that what he doesn't like about himself is that he "had surgery." He doesn't like that he has scars, that he can't walk, and that he can't do anything for himself. This was a lot to hear in the middle of a waiting area, when PT was about to start. All during his PT session, I tried to process how he was feeling. I certainly don't blame him one bit. He looks different, he feels different, and he is different physically and psychologically than most other seven year olds. I can't deny that, but he is still my seven year old, and despite acknowledging all of these differences, I told him he is very special, that going through this will make him stronger, and that none of his other friends can say they survived cancer. Nor can they say they have bionic parts. I told him that when these parts start fully working, his friends better watch out. With that, he started to laugh. However, this subject matter came up in the car ride home as well. It is firmly in his mind, and despite trying to help him manage these feelings, it is heartbreaking to hear your seven year old say he doesn't like himself. I realized for the first time, or maybe accepted it for the first time, that osteosarcoma will be something I am fighting all my life. Not just physically, but I will be fighting its long term psychological effects. That alone was a daunting proposition. I can see as we get further out of treatment, the mental and emotional anguish that Mattie survived through is slowly being revealed. Certainly I could brush that under the rug, and try to deny it and move forward. But whenever you deny something, it only is going to fester its ugly head somewhere else. So we might as well attack the problem head on. I also realized that my desire to keep Mattie protected from others in the cancer community, meaning not attending camps designed for children with cancer, is a bad idea. He needs to see others like himself, living and thriving. Mattie certainly has wonderful friends, but he can't keep up with them right now, and a part of me always feels on these playdates that in a way it is unfair for his friends. I land up feeling like we are some sort of charity case, which I am sure is not how others feel, but I fully admit my own insecurities. I certainly embrace typically developing children interacting with children who have special needs, but I also must understand the importance of making Mattie whole and accepting himself. Until he does this, he will have a hard time integrating back into mainstream society. So I guess his comments to me were a revelation today, and one that will have to force me out of my comfort zone in order to explore other options for him that will help him develop socially. I think he needs to process his feelings (well of course on a child like level, most likely through play and activities), but the only true way to do this is with other kids who have experienced similar issues.
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