Tonight's picture was taken in August of 2009 in Mattie's hospital room. Mattie loved claw like toys and typically I was the recipient of the claw. Though it was a toy and at times I did not care to be pinched, I put up with it because this was a good form of exercise for Mattie. Anything that caused him to use his arms and hands I welcomed. When you think of all that Mattie physically endured, you have to just marvel at his energy. Once Mattie began treatment, we lost his 7:30pm bedtime routine. With cancer, very little caused Mattie to sleep, even chemotherapy infusions. Mattie developed what Dr. Shad affectionately called intensivitis. Which means when you are living in a place that is "ON" 24 hours a day like a pediatric intensive care unit, this impacts one's sleep and wake cycle. So much so, that it almost feels as if you are constantly living in crisis and are hyper alert. This "ON" feeling lasted throughout Mattie's 14 months of treatment. I am not sure how we managed to live on little to no sleep, but I am quite sure this way of living has permanent consequences on one's mind and body.
Quote of the day: He who has a why to live can bear almost any how. ~ Friedrich Nietzsche
This is a very powerful quote indeed, because what it is saying is we all need a purpose to live. Having a purpose motivates us in extraordinary ways. Though this winter and spring for the Foundation have been beyond busy, I have found being busy gives me a purpose. However, my purposes have to produce outcomes or tangibles that I can quantify are helping others. I can put up with almost any kind of busy work if I assess that there is an ultimate benefit. Not necessarily for me, but for the Foundation and those who it is trying to support. This is Foundation Walk planning season, which is an intense time of year for me. However, my mind always leaps ahead and thinks about what happens after May once the Walk is over? The answer is I don't know, and this is always a scary notion for me. Because it means I go from intense Foundation work, to a much more normal schedule. In addition, I also know that summer is approaching and though I love the hot weather, summer is a season that reminds me of Mattie's diagnosis, his start of chemotherapy, and the time of year when most of my friends who have children begin summer plans. For them summer is a busy time of year, filled with kid activities, and for me, well it is no longer that way.
Today was another day in which I spent a great deal of time in the car. I drove to Maryland to pick up Miranda Lambert tickets that were donated by WMZQ to our Walk raffle. Then I headed to Northern Virginia to the American Girl store at the mall. One of our raffle items this year features American Girl items and I had some items to exchange. I have never been in the store, so this was a first for me. I walked right into the store and got a salesperson to help me and talk me through the most popular products, since our ultimate goal is to attract little girls to our raffle basket in order to sell tickets and reach our financial goal ($25,000 for Georgetown University Hospital's Child Life Program). Needless to say I had a good time in the store and selecting items. Ironically one of the hot items for this particular doll (who is a gymnast) are crutches and a cast. I had an absolutely visceral reaction to these items and told the salesperson, I wouldn't buy these. Somehow crutches and a cast remind me of children battling osteosarcoma, which is a serious illness and requires great strength and courage to undergo physical therapy. So to me, these items did not belong in our raffle. Nonetheless, by the time I was finished, I can say this doll has every accessory possible! Which should be a little girl's dream.
Receiving this picture made me happy. Happy because I have introduced art to children in an interesting and social-emotional way! But because I feel as an educator (not trained to work with this age group), I am getting my message across and inspiring children to look at the art, color, and shapes all around them!