Tonight's picture was taken in the Fall of 2005. This was Mattie's first preschool class at Resurrection Children's Center (RCC). A class whose head teacher was Margaret (the lady seated wearing the white pants) and whose assistant teacher was Lana (the lady wearing the green shirt). I haven't mentioned Lana recently, but Lana is also a fantastic educator and person, and we still keep in touch with one another. In fact, Lana and Mattie had their own special connection. There was something magical about this classroom though. There were 12 students and of these 12 children, to this day, I am still connected with 9 out of the 12 families. Only two have I lost track of.... I would say that is rather incredible! I always credit that to the environment and tone set within the classroom. I still remember the first night in 2005, when parents got to meet each other and we went around the classroom chatting with each other. I briefly, and I mean briefly, shared with the other parents the bad preschool experience we had prior to coming to RCC and our hope that RCC would be better. I distinctly remember one parent grabbed me in the meeting and said in front of all the parents that she guaranteed it would different. She was absolutely correct, and she and I are still friends today! It was within Margaret's classroom that Mattie made probably his closest friendship, with Zachary. In fact, in the photo Zachary was sitting right next to Mattie on the bench. They were inseparable and sitting right behind Margaret in the photo was Ellie. Ellie is my friend Carolyn's daughter. Carolyn is my Walk Raffle Chair. I couldn't run our raffle without Carolyn, and yet if it weren't for Margaret's classroom, I would never have met Carolyn. Margaret's physical presence may be gone, but she is far from gone. Her presence exists in the multitude of bonds and connections she has formed for the countless number of children and parents she has worked with over the years.
Quote of the day: At some of the darkest moments in my life, some people I thought of as friends deserted me -- some because they cared about me and it hurt them to see me in pain; others because I reminded them of their own vulnerability, and that was more than they could handle. But real friends overcame their discomfort and came to sit with me. If they had not words to make me feel better, they sat in silence (much better than saying, "You'll get over it," or "It's not so bad; others have it worse") and I loved them for it. ~ Harold Kushner
I am always fascinated by how intuitive people are about knowing when they are going to die. They can predict it much better for us than any medical test or doctor. I saw this first hand with Mattie. I of course did not want to believe it and figured first of all what did a seven year old know or understand about the complex notion of death? Apparently much more than I gave him credit for! I would say Mattie knew his body was in decline way before the rest of us, way before they scanned his body in August of 2009. He certainly knew his cancer came back and had spread. Despite his intense pain and true starvation, he put up with my physical therapy schedule that I established for him. It really was remarkable. Of course as his breathing became labored and we assessed what his true issues were, all therapy ended. But somehow as I was reflecting on Margaret's end of life this weekend, I tied in my insights with Mattie to what I observed with Margaret.
I always viewed Margaret as a bright and well read individual. If met with a challenge, she was going to learn about it, and figure it out. Naturally her illness would test even a saint. The art of communication was probably one of the many gifts Margaret possessed. She could talk to practically anyone and it would be a delightful and meaningful interaction. However, with such a neurological disease, when you lose the ability to speak or to write, how do you communicate? How do you engage with those around you? Well it gets trickier. In Margaret's case she had a board with letters that we would put in front of her and we would point to each letter of the alphabet one by one. Tracking her eyes. If we selected the correct letter she would blink, but basically she had to spell a word out letter by letter, one word at a time to form a sentence. Clearly that took time and was EXHAUSTING FOR HER! For a woman with an active mind, can you mind how infuriating this was?
As I joked with Margaret, we both needed the board! She needed the front of the board and I needed the back of the board to keep up with the words she was forming! I am a visual learner. So whatever letters she was pointing out to me on the front, I would have to record them on the back of the board for myself, because otherwise, I would forget what words we were spelling out. Believe me we learned this the HARD WAY! Which only further complicated and slowed down the communication process. I remember one day last month I talked to Margaret about spending more time with her this summer once the Foundation Walk was over. I suggested that if she wanted to, we could work together to figure out how to use the computer device that she had to assist her with communication. Mind you Margaret's husband and family had tried diligently to work with Margaret on this but they stopped because it wasn't in Margaret's best interest at the time. Before talking to Margaret about this issue, I naturally spoke to Brian (her husband). Brian was fine with it, which is why I addressed it with Margaret.
Not only was Margaret not interested in using the communication device with me but she also did not seem to have a reaction to my suggestion that we spend more time together over the summer. I was surprised by this. It seemed so foreign to me given the person I had known for so many years. At the time I chalked it up to Margaret not feeling well, having a bad day, not being comfortable, and so forth. However, digging deeper, that day always bothered me because this was UNCHARACTERISTIC Margaret. Even on a bad day, this wasn't Margaret. What Margaret was trying to tell me was...... "Vicki, I'm not going to make it through the summer. So there will be no time to use the machine and no time to spend together." Of course if I were her, I would have added to that message.... STUPID, get with the program!!! But Margaret was too nice to say that! Despite caring for people with grave and terminal illnesses, I admit I just can't accept that time is finite. I always think there will be more time, but there never is.
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