Tonight's picture was taken on September 21 of 2008. There was a lot going on in this photo! Mattie was sitting on the bed where Peter or I periodically slept, while he was receiving a dosage of his anti-nausea medication. Meanwhile, I was thoroughly exhausted and had to close my eyes. I wasn't truly sleeping, just trying to rest. I do not think I ever completely slept while in the hospital NO MATTER what time of day or night it was. I lived on the edge in there ready to deal with the next crisis or to manage who was going to walk in the door. Walking in the door wasn't limited to the waking hours in a PICU. It happened at ALL hours and residents seem to love those awkward hours especially! But check out Mattie's facial expression here! He had a regular impish look to him! This was before any of his surgeries. The surgeries changed Mattie dramatically! They changed how he felt about himself, his ability to walk, do things for himself, and to function like a six year old boy. Needless to say after his surgeries he wasn't only battling cancer, he was battling profound mental health issues that were hard to face for an adult much less for a child.
Quote of the day: Let the beauty we love become the good we do. ~ Rumi
This morning I walked to our neighborhood post office to mail a letter. While walking I ran into one of my neighbors. I know this woman's daughter for many years. We paused to talk. This lady is an older adult and several years ago lost her husband to cancer. She then decided to relocate to DC to live with her daughter, which is how I got to know her. In any case, she began to ask me how I spent my summer. Well that was a loaded question. Since she knew about my story and loss, I was honest and told her I spent the summer writing a book chapter. Of course I could have written a chapter on anything. The wonders of chocolate, the peacefulness of bird watching, or how to cultivate a garden in ten easy steps..... but no of course not! So I told her the premise of my chapter. She paused and acknowledged that this was NO EASY chapter to write for many reasons. One smart lady! She then went on to make a comparison between losing her husband to cancer to losing a child to cancer. The differences in the ages and a life lived to one not even explored was well stated. In any case, we had a lovely conversation, as she then wished me luck on my second chapter. It was a nice way to start off the day. After all this is not a person who I interact with often and yet she got it right away. She understood what I summer I must have had and now what a Fall I am enduring.
Later in the day, I spent time digging through Foundation supplies. This Sunday, Mattie Miracle will be attending Curefest (www.curefestdc.org) from 9am to 1:30pm. Close to 1000 people are registered for this Walk to highlight Childhood Cancer Awareness and 75 exhibitors will be featured. Of which we are one!!! We are giving away free t-shirts, stickers, kid trinkets, and promotional materials. Our main purpose is to promote our Foundation and to let others know our platform to develop a National Psychosocial Standard of Care. I can safely say after several hours of working, Mattie's room no longer looks like a warehouse and we are all set to go on Sunday!
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