Tonight's picture was taken in the Fall of 2005. Mattie was in his first year of preschool. Margaret, Mattie's teacher, captured this photo of him and shared it with me. The ironic part about Mattie was he was very sensitive to things touching him, yet absolutely loved paint, anything gooey or slimy. I loved his facial expression in this picture. It seems like a look of delight mixed with fascination! Mattie was inspired in preschool, and would come home and want to paint, and even paint with his feet. Yes, we did this many times. In fact, Mattie made Thanksgiving Day cards for teachers and other special adults in his life that year by painting with his feet. Those cards were most memorable to me.
Quote of the day: All who have been touched by beauty are touched by sorrow at its passing. ~ Louise Cordana
I am spending some time each day this week with my friend Mary (Ann's mom). Mary misses her daughter when she is away, and I try on some level to fill that void. So I began my day with checking in with Mary's care companion, Shayla. Shayla and I have a system that works for us when Ann is gone. I quickly surmised that it was going to be a busy day for Mary today, a day which began with a van tour of the town, most likely to see foliage. Mid-trip, Shayla let me know that Mary got motion sick and gave me other updates. So I had a feeling by the time I would see Mary this afternoon, she was going to be wiped out. I was correct.
I had the opportunity to have lunch today with Alison. As many of my long standing blog readers know, Alison was our Team Mattie Fund manager and our communications coordinator. Alison spent a great deal of time behind the scenes helping us, supporting, us, and also playing with Mattie. Alison has many skills, but what others might not know about her is she can do many voice impressions and is VERY humorous. Her Patrick impression from the show Sponge Bob is a riot! Mattie went through a Sponge Bob phase during his battle with cancer. I recall one particular day Mattie was home from the hospital and in a terrible mood. Alison was visiting and she got down on the floor with us and played for hours. We entertained him with a cardboard boat Mattie made at the hospital, some Easter grass from a basket, and pretend people. These objects came to life when Alison animated these characters with her voices. Alison was always the funny and goofy character and I was always the more rigid and uptight one! Mattie had a good time while playing with Alison and anything that made him smile and brought him happiness, made me happy. Especially since we had VERY little happiness at home. In fact, coming home in many ways was worse than living in the hospital.
I chatted with Alison today about so many things, we laughed, cried, and as always when I need a reality check, Alison is there. Many of my friends in the past month or so have encouraged me to stay connected with them, to reach out to them if and when I need to, and know that they want to listen. I am absorbing all of this, and slowly as I feel the need to talk, to be heard, and the need to engage with others, I am trying to reach back out again. But some weeks it is easier to do this than others.
Later in the afternoon, I went to visit Mary. Mattie's preschool teacher and my friend, Margaret, had already been by to visit Mary and also brought her cookies. I was sorry I missed Margaret, because our banter back and forth is very good stimulation for Mary. Margaret and I never have a hard time chatting, it comes easily for us. By the time I arrived, Mary was sleeping. I had a feeling she would be knocked out from her day's adventure. While Mary was sleeping, I sent time with the lady I mentioned before on the blog, the lady suffering from Alzheimer's disease. Today, this lady was very upset (not unusual), crying, and screaming out for help. Since Mary was sleeping, I went over and sat with my new friend. She immediately grabbed my hand and wanted me to sit with her. Which I did for 90 minutes. Within this 90 minute time period she had bouts of sadness, paranoia, and crying. However, I never raised my voice, I just listened, held her hand, and reassured her. Want to know what I noticed? After 90 minutes, she began to calm down. We talked while I was rearranging furniture in Mary's room, and she was watching me closely while I was doing this. She seem intrigued and also concerned about me. By the time I was ready to leave, she was convinced we were related and said she looks forward to seeing me tomorrow. What this woman illustrated to me was even with deep cognitive impairment, when you treat someone with respect and like they matter, you get results.
Several times, I tried to wake Mary up and chat with her. But she was too tired. She heard me though and acknowledged my presence. Especially as I put grapefruit smelling lotion on her hands and arms. One of Mary's caregivers in the evening is absolutely a doll. We chatted tonight and she assured me that if Mary wakes up hungry even at 9pm, she would help feed her. You have to love and admire good hearted people like this caregiver because they do not grow on trees. Any case, it was a day of positive connections for me, connections that I needed as I have been going through some low points.
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