Tonight's picture was taken in May of 2008, on Grandparent's day at Mattie's school. Mattie was very excited to show off his classroom and his finished products to my parents. I was fortunate to be able to attend the event, because I volunteered at it. It was a day to remember. My parents had a good time at the grandparent's breakfast reception and truly enjoyed watching Mattie and his class perform a musical number in the school's auditorium. This picture of Mattie and I was taken by my mom in Mattie's classroom. I had no idea at the time that Mattie would only experience one grandparent's day ever, and that in essence so would my parents and I. I am so happy I made the time to volunteer on that day, and that I now have this memory to pull from on difficult days.
Poem of the day: Writing by Charlie Brown
Write they said
Pour your feelings out
Upon the page
Until you feel better
I will be writing for years
To cope with the pain
The sorrow, the anger
Of the loss of you.
I don't think it is working.
Charlie's poem tonight made me reflect on my blog postings. In July of 2008, when we started writing the blog, it was a means of mass communication to update our team on Mattie's status. However, over this almost two year time span, of which I have yet to take one day off from writing, the blog has evolved. Our readership now goes beyond just our core team, and in fact there are people in other Countries and States whom I have never met, who are loyal readers. I believe the blog has evolved in stages from initially reporting the facts, to a daily account of the physical, psychological, and social transformations that pediatric cancer forces a family to endure, to now almost a diary like account of emotions illustrating the complexities of grief and loss of a child. Maybe Charlie is right, I may be writing for quite some time in order to feel better, but on nights like tonight, and thankfully this doesn't happen often, I pause and wonder... what will I write tonight? Will anything I write be worth reading?
I learned on Saturday night that Mary's (Ann's mom) sister died. Mary's sister lived in California, and I know that Mary was very close to her. Ann broke the news to her mom on Sunday, and Ann told me today that Mary was asking where I was yesterday. Mary has astutely learned that when things aren't going well or there is a crisis, I tend to be around for support. I found Mary's comment to be very insightful and sensitive. Clearly Mary has seen a pattern, after all, I was around intensely while her husband was very sick and died, I was around when she went into the hospital, and was transferred to a rehabilitation facility, and I was around when she moved into a new assisted living facility. In addition, she also knows when Ann goes out of town, I try to be on point so she doesn't feel too out of sorts. I clearly can make these connections because I am cognitively intact, however, because of Mary's disease progression, some days her lucidity is questionable. Nonetheless, for some things, Mary is as sharp as a tack, and when Ann told me Mary's comment about me, it made me stop and pause. It made me pause for two reasons. One, Mary is cognitively aware enough to see a pattern in my behavior, and two, in Mary's own way she is saying that she appreciates my support during these challenging moments. Though I do not do visit or help Mary because I want accolades and acknowledgment, I have to say it is nice to hear that perhaps something I do is making a difference in someone else's life. Mary is always kind enough to give me this feedback, and most likely I imagine she realizes the pain I am in and therefore understands that expressing her emotions to me will most likely be appreciated. Which naturally they are. It certainly takes courage and love for another person to want to take the time to express one's emotions, but I have found that connecting on this personal level is the true cornerstone of a solid relationship. Tomorrow, I decided to go visit Mary. It has been a number of weeks since I last visited her at her assisted living facility. I am not sure why, because I am very fond of her, but maybe emotionally it takes a lot to just manage myself on a day to day basis.
This afternoon, I met up with Ann and had lunch. We talked about Walk related items, and then I went home and spent the rest of the day glued to the computer. I was working on a tag line for the Mattie Miracle Cancer Foundation. A tag line basically describes your organization in few words, or relates a message about your organization. For example, Coca Cola's tag line is "Open Happiness" and McDonald's is, "I'm lovin' it." Trying to capture the essence of our Foundation in a few words is a royal challenge, but I wanted to put something down on paper, since we are meeting with our graphic designer tomorrow, who is putting together a more professional branding look for the Foundation. In addition to the tag line, I also have been researching pediatric cancer facts. I am trying to gather as much information as possible in order to be able to incorporate this educational information into this year's Walk.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was so glad to hear that yesterday was a productive day. I do think it is easier to cope with grief when you have tasks you have to do. That is a real positive when then tasks have to do with Mattie and they require focus and determination to get them done; this seems the perfect combination to me under the circumstances. While many of us don't call you on a daily basis that doesn't mean we are not thinking about you, wondering how you are doing and if you are managing in spite of the grief. I know I stop many times a day and whisper a little prayer for you even though I usually email only one or perhaps twice daily. I am certain that others do the same. I do thank those who are in touch more often, that support is critical in surviving the daily routine of grief. Today as I practice on my own I send you the energy I get from making that effort which is more difficult alone than with others. I hold you gently in my thoughts."
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