Monday, August 29, 2011

Monday, August 29, 2011

Tonight's picture was taken in August of 2007 in Coronado, CA. That summer Mattie had made real strides in the pool. He was developing confidence in the water and was showing us, during that moment in time, that he could float.

Quote of the day: For some moments in life there are no words. ~ David Seltzer

I couldn't have stated it better.... FOR SOME MOMENTS IN LIFE THERE ARE NO WORDS! I think words are quite good for explaining tasks, ideas, and feelings. Certain feelings. Some things however, such as the death of a child, are beyond explanation and in all honestly no words could ever explain the inner turmoil a parent is left with. I can certainly try to explain my thoughts and feelings, or at least I have attempted to do this for three straight years now. But there are days when I just can't get someone else to understand the depth of such destruction left behind by pediatric cancer. After all, why would I want you to understand this? I wouldn't wish this upon you, and yet, when I don't share a friend's happiness, a friend's anger about things, a friend's direction and purpose for life, cancer is the culprit and explanation. To appreciate me and to truly be my friend means that you accept that cancer was and is a part of my life.

I spent a good portion of my day trying to help my friend Ann. Her cousin was diagnosed with cancer and he is in town this week to get his tumor removed. Today was his surgery, and while Ann was with him all day, I tried to help her with her children. In the midst of helping her, I would get periodic updates about her cousin.

For me, it is hard not to picture someone going through surgery without thinking of Mattie. Mattie's surgeries were fresh in my mind today. I recall the anxiety of waiting for Mattie through each surgical procedure. Mattie's surgeries were all long, hours and hours and when you lump into it recovery times, most of his surgeries were over 12 hours long. I honestly do not know how someone manages to wait for a loved one going through surgery without having a surgical liaison. I still remember Mattie's surgical liaison, Melissa. Melissa went through every surgery with us, and literally would call me on my cell phone hourly with updates about how Mattie was progressing in surgery. This is crucial because otherwise it is very hard to get real time information. When you are waiting over 8 hours for your child, hourly updates are truly needed.

I went about the day trying to do tasks and chores that would help Ann and this afternoon, I went to visit her mom, Mary. When Mary saw me, she smiled and was happy to see me. She put two and two together and realized I must have been helping her daughter today, at which point she looked at me and said, "you are a very special person." It is nice to have a fan!

This evening, Peter went with me to our car dealership, since something is wrong with my car. On the drive to the dealership, I had a flashback of Mattie in the
post-anesthesia care unit (PACU) at Georgetown University Hospital. The PACU is an area, normally attached to operating rooms, designed to provide care for patients recovering from anesthesia, whether it be general anesthesia, regional anesthesia, or local anesthesia. In any case, in my head tonight I could hear Mattie crying and screaming out for me as he was waking up from anesthesia and in intense pain. Really NO parent should hear their child screaming and writhing in such pain. Mattie's pain was so intense that even the veteran nurses working in the PACU were moved by him. After all he was a beautiful child all cut up, drains everywhere, attached to all sorts of machines and monitors, and he was screaming and crying uncontrollably. One scene of this would be MORE than enough. Peter and I have THREE we lived through (two limb salvaging surgeries and a sternotomy). I think hearing about Ann's cousin tonight in recovery triggered something in my mind, and though Mattie is never far from my consciousness, the pain of his surgeries and recovery process flooded all back.  

I am left tonight feeling very tired, with a migraine that won't go away, and simply with the notion that I can't and won't ever be normal or myself again. As I explained this to Peter, he understood immediately and also commented to me that my intense tiredness and fatigue are grief related. I couldn't agree more. To add insult to injury, they are back to repaving our road outside our bedroom window tonight. So again there will be no sleep, which can only impact my already negative mood.