Monday, November 16, 2009Tonight's picture was taken in November 2008, after Mattie's second major limb salvaging surgery. Within two days after the surgery, Mattie decided to show off his skills. He found the strength and energy needed to lift his leg. No amount of bandages, drainage tubes, or pain was going to hold him back! Again notice the SMILE!!! When I look at this picture I sit in amazement. Mattie had a spark for life, and certainly I always knew that cancer could take his life, but a part of me never thought it would be this soon. After all how can a disease claim the life of someone so energetic, so humorous, so in love with life? I have no answers other than cancer can do anything and it does it on its own timeline not ours.
Poem of the day: My Son by CB
It’s been two months since you went away
And yet it seems like yesterday.
When you were born you stole my heart
I never thought we’d have to part.
I believed I would always see
You in my world and so loved by me
Now all I have are the memories of you
Will those be enough to get me through?
Long years ahead, I have no clue
How I am to build a life anew
Without my son, my pride, my joy
What is my life without my boy?
Today I had the pleasure of having an appointment with a new neurologist. I use the word 'pleasure' VERY loosely. Before Mattie's illness and death, I really did tolerate most physicians and I could handle those with attitudes and very large egos. However, my ability to handle certain things now has greatly diminished. Perhaps it is Mattie's doctors who have spoiled me. Mattie's doctors were human FIRST and doctors second. I am not implying these physicians weren't competent and talented too, they are most definitely, but they also understand the need to connect with a patient on a very open and genuine level. Certainly oncology versus neurology are two very different fields, but why can't all physician's value this connection with their patients? I guarantee them, they would learn more about their patients if they did! After all, you are coming in to talk to a doctor when you are not feeling well and are most vulnerable. Who wants to share anything personal about one's self when you have a physician who is attitudinal and judgmental sitting across from you?
Today's physician had several strikes against him. He is the third doctor I have seen since Mattie's death. With each of these doctors, I begin the appointment by alerting them to the major loss I have experienced. The other two doctors I saw recently, couldn't say enough to me about Mattie's death. They actually acknowledged what I said, and also acknowledged that this could affect my physical health. What a concept! After I told the doctor today about Mattie, at first he literally had no reaction, and then after about a minute, mustered up the strength to say he was sorry for my loss, but moved on with the appointment. That was strike one in my book. Strike two came quickly after that when I asked him about a previous test result and why my former neurologist seemed concerned about it. Not only did he tell me he was "underwhelmed" by these previous results, but then implied that I may have misheard what the former neurologist was telling me about this issue. Certainly I am tired now in my current state, but I assure you, when it comes to my health or those I care about, I listen very carefully, and I remember things fully. Not only did I find his tone insulting, but I did not like his judgmental nature of telling me he was underwhelmed. I am happy he is underwhelmed, because I am totally overwhelmed by everything in my life. What is underwhelming to a doctor, can still be overwhelming to a patient. The final strike today came at the end of the appointment when he asked me if I was in therapy. In his mind, I should be seeking mental health services because of the nature of my loss. He knows nothing about me, yet feels QUALIFIED to recommend that I need services. I am not qualified to prescribe or recommend neurological medications, and I think he shouldn't feel qualified to assess and determine when someone needs therapy. By the time I left his office, I wanted to throttle him, and he is lucky Ann was with me, because otherwise, I may not have kept myself in check. A part of me wanted to stop and educate him about the fact that real grief work/therapy doesn't begin until about 6 months after the death of a loved one, but I neither wanted to waste my time or breath on him. I just sat back today and wondered what he does to other patients who are not trained in the mental health field!!!!
To add insult to injury, I also underwent an hour long MRI today. For those of you who have taken a MRI, you know how loud it can be inside the machine. You are strapped to a table lying down, a grill is put over your face, and you are moved into a tube in which you feel extremely confined. The only way I can handle this test is I NEVER open my eyes the entire time I am in the machine, because if I did, I most likely would panic. I am not sure if some of you are familiar with the electronic game, Simon, but I swear while lying in this machine today I felt like I was transported inside this electronic game. The intense beeps, bangs, and pulses of noise were deafening at times, but after about five minutes, I talked myself into ignoring the sounds and this helped me tremendously. Of course I did not like receiving an IV with contrast in my hand either, but what this automatically reminded of was Mattie's time at Georgetown. Mattie put up with SO many scans. I will never forget the first time his doctor prescribed a MRI for Mattie. This particular doctor felt as if Mattie could undergo this procedure without sedation. That was ludicrous, and really inhumane, and fortunately Mattie had the where with all to say NO! As an adult, a MRI is daunting, but to ask a sick and scared child to be confined to a tube, making horrendous noises is really over the top. So while sitting in the scan today for an hour, I couldn't help but remember my brave and courageous boy.
In between seeing the doctor and having a MRI, I had lunch with Ann. She was in my neck of the woods today since she sat with me through my doctor's appointment. I took Ann to the Chinese restaurant in our complex. We sat at Mattie's table. Mattie enjoyed visiting this restaurant because he liked the owners and would even say a few words in Chinese to them, which they got a kick out of. I can't look at this table the same way now, because with Mattie, bags of Legos always came with us to the restaurant. Many a night, we would be attempting to eat and building at the same time. That vision came back to me today while sitting there. While at lunch I had the opportunity to verbalize how I was feeling on Sunday, and just how awful that feeling was. The weekdays are hard enough, but the weekends are miserable. Before Ann and I departed company today, she gave me a gift. I wasn't expecting a gift, and when I asked her why she was giving me a gift, she said because she loved me. It is true I am very down, and I have my moments where it is very difficult to pull out of these feelings, but despite how I have been feeling I am very aware that the true gift today wasn't what was in the bag, but the words that were expressed to me.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "You might want to reconsider trying to attend some of these "celebrations" until you are ready. Less than a century ago, immediate family members exempted themselves from social engagements for a year after a death; I believe the social and religious customs were to accommodate the feelings of the grieving, not just "social niceties." You need a lot of emotional energy to attend these sorts of events; your emotional "bank account" is quite low right now and what is in there is not appropriate for happy events. I think you know what you can handle and you need to trust yourself. Peter may be in a different place and perhaps you are concerned that will cause a rift between you but you can manage that as long as you keep those lines of communication open. That doesn't mean you should isolate yourself; see your friends and get out but do it in a smaller, more comfortable, restrained way. Today, think about what you can do and try to plan one short "outing" per day even if that is just to the library."
The second message is from Sara. Sara and I know each other through Mattie's preschool. Sara was Zachary's nanny. Zachary was one of Mattie's closest preschool buddies. In fact up until the end, Mattie and Zachary had a friendship that neither distance nor illness could separate. Sara wrote, "I can't tell you how saddened we were to here about the loss of Mattie.... in fact it has taken a while for it to sink in. I have started this letter many times.... sometimes email, sometimes on paper and it never seemed right. I just wanted to hug you, to sit with you. There isn't anything I can say to express my deep sadness for you. It is so hard to believe.... I have so many wonderful memories of our "play dates" together. Zachary and Mattie were such a riot. Those two knew how to have a good time and often put us in the middle of it. Those times on the playground after school or one of many lunches or homes visits we had were good times. Over the last year of reading your blog...I have to say you and Peter were (and still are) such a great team. You both have a connection that a lot of people will never have. Mattie and Zachary also had a friendship that most people don't ever find. Everyone should have someone who will question the health care they get, like you and Peter did for Mattie. There must be many mistakes made simply because no one was there to watch what was happening or to do research. I am so glad you have Ann and her family.... what a blessing. Oh, I wish I could give you another hug. When we would read your blog my son would turn to me and say "pray for Mattie" .... and we would, and he would ask questions about Mattie. He loved seeing "Mattie's Legos" creations and would ask if he could go to Mattie's house some time. I would love him to meet you some day "Mattie's MOM"..... my friend. I will have to get him some duplo legos so he can build with "Mattie legos" as he calls them. I wish Mattie could show him some of his wonderful creations. That would have been fun. I hope this isn't insensitive to say... it is not my intention to cause you more pain. I've probably said to much.... but I just wanted you to know I think of you often and please take care of yourself and Peter. You are so very special."
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