Wednesday, September 6, 2017

Wednesday, September 6, 2017

Tonight's picture was taken in September of 2007. Mattie's friend Zachary had a nanny, Sara. Since Mattie and Zachary were inseparable, Sara and I spent a great deal of time together. We began friends, as I appreciated her caregiving style and the way she would calmly and astutely provide guidance and discipline. That particular day, we went over to Zachary's house to visit with Sara and her new baby. Sara put the baby in Mattie's lap and to me Mattie's look was priceless! 


Quote of the day: Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security. ~ John Allen Paulos

I began the day with a lovely email from our friend, Tim. Tim used to work at the Hospital Mattie was treated at, and was our philanthropy contact. Though Tim is no longer there, this hasn't stopped him from thinking of us, remembering Mattie, or supporting the Foundation. I suspect this is one of the reasons Tim is an outstanding philanthropy professional. It isn't just about raising funds, first and foremost for him it is about making a human connection. 

Tim NEVER met Mattie, but got to know him through our words, through meetings with Peter and me, and of course the blog. Each September, on the week that Mattie died, Tim wears an ORANGE tie for an entire week. Here was today's first orange tie sent our way. I LOVE Tim's tradition and would love to find a way to spread his "wear an orange item" tradition, as this week will always be the one that transformed our lives forever. 

Meanwhile this weekend we created this composition over Mattie's bed. My mom gave Peter and me this butterfly picture for our anniversary, but before hanging it, I wanted to figure out what to put around it. It came to me. Peter took pictures of all of Mattie's ceiling tiles that he painted at the Hospital. We have 3 out of the 5 original tiles, but they are dirty and there is no way I am hanging them on our walls. Instead we transformed his art work into photos and framed them. Now we will always have Mattie's tiles on display, where they should be. 

How did I get these tiles. Well about two years ago, the Hospital sent out a GROUP email to parents letting us know there would be party/gathering to collect the clinic's ceiling tiles (tiles that our children were allowed to paint on). All tiles had to come down because of the renovations. This probably sounds like an innocuous request from the Hospital. However, to me, it sent my head spinning and I actually got angry. To me these tiles represented Mattie's life and five of his creations were on display in the clinic for others to see and appreciate. Somehow that gave me peace knowing that Mattie lived on at Georgetown through his art. When I received the group email, I was deeply upset. Mainly because I found it insensitive to those of us who may have lost a child to be lumped into a message with survivors. For us, we are NOT coming to the Hospital to celebrate and pick up the tiles. For me the tiles are legacy items and I deemed the Hospital basically saying that they were NO longer needed, weren't important to them, and that the tiles were dispensable. I think there would have been a better way to deliver this message than through a group email, at least for those of us who lost our children. In any case, the clinic lost Mattie's BIG ROACH tile, and wanted to keep his Scooby Doo tile in the clinic. So I only received three of his five tiles back (the Train, the Haunted house, and the Rainbow -- which you see framed as pictures). The other two framed pieces are creations Mattie did while battling cancer. 

I feel this display was well timed with Mattie's 8th anniversary. One thing is for certain..... Mattie was very creative and thankfully made many beautiful pieces during his 14 month battle that add life to our home. Eight years without your child in it plays tricks on your mind, therefore these tangibles are VERY needed to keep us grounded.