Tonight's picture was taken in February of 2009. Mattie was home between treatments. Our therapy was building with Legos. As you can see Mattie constructed this beautiful row house with Peter. This house is still on display in our living room. When Mattie was battling cancer, we were up at all hours of the night. It is funny how the body can get used to practically no sleep and yet function under the most dire of circumstances in which Peter and I made life and death decisions daily for Mattie's care.
Quote of the day: Connecting with those you know love, like and appreciate you restores the spirit and give you energy to keep moving forward in this life. ~ Deborah Day
Today I had the opportunity to have lunch at the Georgetown Hospital. I went to meet with the team who coordinates and runs the monthly pediatric nurse support group luncheon that Mattie Miracle funds. This coming year will be our third year funding this important psychosocial resource. However, planning a support group for nurses is super challenging. It is challenging because of timing and the environment. In a pediatric unit there is really no set schedule per se. So there isn't a set lunch break. Nurses are juggling giving chemo, charting, meeting with doctors and other personnel, and of course managing family concerns. This makes it almost impossible for them to take 30 minutes even for lunch, much less to attend a support group meeting. In addition, given the fact that they are dealing with crises and life and death issues, I imagine it is very hard for nurses to step out of that environment into a support group to talk about feelings and thoughts. Honestly when working in such an environment, you have to hunker down, focus, and put emotions on the back burner sometimes. I am learning a great deal about the complexities of hosting such a support group in an in-patient pediatric setting, but given all the obstacles that the setting provides, the support group is still necessary, it is still attended, and progress is being made. I meet with the support group planning team every couple of months for updates.
The two individuals I had lunch with today, I also happen to know quite well. One was Mattie's nurse and the other was Mattie's chaplain. It was lovely to be able to sit down for two hours over lunch and talk about the support group and in the process talk about Mattie and my own experiences. Experiences which do give me important insights into the climate faced by nurses. I may not have been a member of the hospital staff, but after living there for 14 months, you would be amazed what kind of information Peter and I learned. Living in a hospital is a lot like going into a foreign land. You have to learn the timing of things, the hierarchy, who is in control, the checks and balances, and the overall language and values. When I met with Anita and Sharon today I felt like I understood the language they spoke, I understand what they are seeing and experiencing, and most of all it reminds me of my time with Mattie in the hospital. As Sharon said to me today, coming back to the hospital requires super human strength and to be grounded spiritually. Sharon was with us for the last several hours of Mattie's life, so she knows what we experienced, because she was in the nightmare with us. Being with people who were on the journey is very helpful to me, because I don't have to explain to them what I went through. They know it all too well and when they wonder how I have made it and keep coming back, this makes me feel good. Because I feel....... YES YOU GET ME!
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