Tonight's picture was taken in February of 2009. Mattie was sitting in his wheelchair posing in front of the door into his hospital room. Mattie's room was always decorated with something! At first I posted items that people sent Mattie as reminders to him and us that he/we were thought about. But over time, Mattie's room became our home. Therefore, like any home, when you move into it, you put your own personal touches on it. So literally with each move in (and we had many!!), I would decorate, and with each discharge, I would disassemble the room. Just to unfortunately re-assemble it all over again practically days later upon re-admission. Our lives were chaotic, but there was something to be said to seeing color, paintings, and anything other than hospital equipment, white walls, or worse, Georgetown's pool blue walls. The beautiful painting on the door that you see were Mattie creations. The tell tale Mattie symbol in most of his works, was the sun!
Quote of the day: Laughter is the sun that drives winter from the human face. ~ Victor Hugo
Today was like a scene out of an I Love Lucy episode. You just had to laugh. We had a Foundation think tank conference call today. That lasted three hours long. For those of you who know me well, you know I do not like being on the phone. But a conference call for three hours tests my limits on multiple fronts. While the call was going on, I could see a team of work men coming onto our deck. Fortunately Peter was home today and knows how to manage a conference call, talk to the work men, and still be engaged and following what he is hearing. I know I couldn't have done that. If I am on the phone and I need to focus on content, then I can't have distractions.
However, the workmen were not here for an easy problem. They were here to fix the burst pipe in my wall between the hose in my outside wall and the kitchen. Needless to say, the dishwasher was removed, walls were cut open, pipes were cut, and things were in every direction. When the phone call was over, Peter came upstairs and told me...... "DO NOT GO into the kitchen!" He prepared me for what was happening since I was upstairs.
When I went downstairs, I was then visited by our complex's painter. Are you getting the picture? It was down right humorous! I have gotten to know Derrick, the painter, because he surprised me last summer and took my rusted bird house off my deck, cleaned it, repainted it, and returned it. That was a wonderful and unsolicited gift! People who work in our complex do that for us, which is why were aren't moving from here any time soon. Any case, Peter and I were determined to paint our own deck this weekend. It isn't supposed to rain this weekend, and the weather promises to be warmer. However, Derrick really doesn't want me to do this. He doesn't want me wasting my time and energy. Instead he wants to scrape and paint our deck for us this year. Typically I would want to do the painting and planting myself, but this year, I am accepting the help! Peter and I will focus on planting this weekend, which is something which is equally taxing but gives us pleasure. In a way we need such a task and diversion on this holiday weekend.
Later in the day, we went to Mattie's school, where the Foundation Walk will be held. We met up with Mary, Mattie's technology teacher. Mary is a special soul. Mary lost her mother to cancer and had a very special connection to Mattie. The connection started when Mattie was healthy and was her student, but when Mattie developed cancer, Mary literally came to the hospital EVERY week to visit him. She loaned Mattie a computer to use in the hospital and continued technology lessons in the hospital with him. Of course there were many times Mattie did not feel like learning or participating and Mary understood and engaged Mattie in whatever activity he wanted to do. Mattie always looked forward to Mary's visits and recently Mary shared with me a special audio file that Mattie had recorded which I named the "una moon" file. I thought I lost that precious file. But Mary found it and sent it to me a few days ago. I haven't listened to it yet, because I have to be in the right frame of mind, but when I do, I will share it with you. I recall the night Mattie recorded his una moon song. I was getting ready for bed and Mattie was already in bed with his IV. He was waiting for me to come into his room (which is where I slept, since he couldn't sleep without adult supervision given all his health needs -- ivs, meds, physical disabilities, etc). While waiting for me, he made up a song about me. His pet name for me was "una moon." Which is how the song got its title!
Last July 4, Mary had twin boys. Today, Peter and I got to meet them! They are absolutely adorable. We brought them several Mattie Miracle t-shirts. They will be our youngest supporters yet! Mattie brought many special people into our lives, and Mary is most definitely one of these fine individuals.
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