Tonight's picture was taken in August of 2009. Peter snapped this photo while Mattie and I were resting. Mattie requested to sleep inside Peter's tent. So Peter got this big thing up and standing between our dining and living rooms. We put in aero mattress for each of us and a couple of Mattie's battery powered lanterns. Keep in mind that the IV pole and pain pump were also in the tent with us. There was so little we could do for Mattie at that point, so whatever he asked for that was doable, we did!
Quote of the day: Once the realization is accepted that even between the closest human beings infinite distances continue, a wonderful living side by side can grow, if they succeed in loving the distance between them which makes it possible for each to see the other whole against the sky. ~ Rainer Maria Rilke
Yesterday I managed through the day with a migraine. I went to bed, but by 2am, my head was pounding and it woke me up out of a deep sleep. I must have been up for an hour or two and then went back to bed. When my 6:30am alarm went off today, I didn't know what hit me. But I got up because if I don't, everything around me would come to a standstill.
Since my parents moved in, Peter brings me up a cup of tea every morning while I get myself showered and dressed. That may seem like a small gesture, but it makes a big difference to me. Otherwise, I am not sure when I would drink anything in the morning. As tonight's quote points out, Peter and I have perfected the art of living side by side, and seeing and appreciating the other for who we are. Not every husband could handle our living conditions. But Peter has always understood my full on caregiving style and has never questioned it or asked me to change. I may not mention Peter much in my postings, but all things are possible here because I have an understanding spouse.
This morning after I got my dad washed, dressed, had breakfast and out the door to his memory care center, I hopped on a conference call. Another non-profit from Arizona heard about Mattie Miracle and our psychosocial work and wanted to learn more. This non-profit is working on designing play spaces for children with life threatening illnesses. This concept falls nicely within our Psychosocial Standards of Care. So I highlighted the Standards by phone and shared our social interaction chapter with her, so she could see that the research literature truly illustrates the importance of social interaction for children with cancer. As these interactions increase knowledge (as children learn from play), decrease social isolation, and increase adjustment.
Later in the day, I took my mom out to lunch. After lunch, we walked the mall. My mom's walking is labored at best, or I should say it looks painful, but fortunately she doesn't feel or see the issues in herself. While shopping in one store, the store representative came up to us and he literally said.... "are you two sisters?" I am sure he was trying to be cute or friendly! But I wasn't in the friendly sort of mood, nor do I feel good about myself. As I have lost my walking and exercise routine. In any case, I literally snapped at him. I said, "are you insulting me because I look much older than I am, or you think my mom looks my age? Either way, I come out looking pretty bad in this equation." He literally had NO response for me. I have heard people make just small talk like this, and typically I don't mind it. But his comment sounded like he was sharing a FACT and I just did not care for it one bit.
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