Tuesday, February 8, 2011

Tuesday, February 8, 2011 -- Mattie died 74 weeks ago today.

Tonight's picture was taken in July of 2003. Mattie managed to scoot himself between all my flower pots and land up at the back of our plant stand. He wanted an up close and personal view of my violets, so he could feel their soft and fuzzy leaves. As you can see he was very successful, and despite not walking at 15 months, he had an incredible way of moving around quickly!

Quote of the day: One often calms one's grief by recounting it. ~ Pierre Corneille


It seems ironic that Mattie died at Georgetown University Hospital 74 weeks ago today, and that tonight I returned to the hospital for a three hour long parent advisory board meeting. As I drove into the hospital parking lot, I had an immediate reaction. Naturally I have returned to the hospital numerous times since Mattie's death, but today, as I drove to find a parking space, I couldn't help but remember Mattie and I struggling together in this concrete labyrinth. I can still vividly remember driving to the hospital when Mattie was sick, and trying to unload him and some of our things in order to check into the hospital. Finding a parking spot was nearly impossible and then I recall the elevators in the parking structure weren't always working, and I would then have to push Mattie's wheelchair through the parking lot, up the ramps, and finally into the hospital. Those moments of panic about Mattie's health, the desperation of trying to find a parking space during each hospital visit, and the feelings of sheer exhaustion from caring for Mattie all came back to me tonight. So this is the state I entered a three hour of meeting.

Naturally because Peter and I lived at the hospital for over a year, we know many people there. In three hours, I ran into three people in the hallway that we knew. The first person I saw and chatted with was Sharon, Mattie's hospital chaplain. Sharon and I caught up with each other and the running commentary I heard from everyone tonight is they are all thinking of us. Later on in the hallway I then ran into Julia, one of Mattie's HEM/ONC nurses from the Lombardi Clinic. Julia was one of our favorite nurses in the clinic. She has a calm demeanor, which was needed by both Mattie and I. Unfortunately Mattie did not get assigned to Julia often. I was very touched to hear that Julia continues to read our blog, and loves looking at the nightly pictures of Mattie. After I saw Julia, I then ran into Dr. Abu-Ghosh. Dr. Abu-Ghosh is Brandon's (Mattie's big buddy) doctor and she was also Cody's doctor. Some of you may recall me talking about Cody. Cody was Mattie's age and died from Neuroblastoma about 7 months before Mattie. I still recall the video I saw of Dr. Abu-Ghosh holding Cody as a baby (since he battled cancer for years), and it can still brings tears to my eyes. Mainly because you could see the hope Dr. Abu-Ghosh and Cody's mom had in their eyes, as they were caring for Cody. In any case, Dr. Abu-Ghosh was surprised to see me, we gave each other a hug, and it seems to me in the hug many memories were exchanged between the two of us. Words weren't needed, since we lived through many anxious Mattie moments together in the PICU and the clinic.

Tonight's meeting was in a way bittersweet. The sweet portion is I am hearing and learning about the needs of parents caring for hospitalized children and through my position on the board, I am able to participate in some exciting projects. Projects that The Mattie Miracle Cancer Foundation maybe able to fund and oversee. I am working on two initiatives in particular and I hope to unfold my thinking at our Foundation Walk on May 22. However, there is also a bitter side to these meetings. Tonight, our pediatric advisory board met with the Neonatal Intensive Care Unit (NICU) advisory board. Since our groups do not know each other, we all went around and introduced ourselves. Every board member is intimately involved with the hospital because his/her child was treated there. So naturally I have this in common with these board members, however, what we do not share in common is that special club I write so often about. The grieving club. Each time I have to introduce myself in this type of setting, I find that I want to scream. I want to scream because others can't possibly understand my pain. Their children are alive, their children survived. Most of them do not know how hard it is to come back to the hospital and try to help, to try to run a foundation, and to try to keep Mattie's memory alive. After the meeting was over, the woman sitting next to me came over to talk to me. She wanted to tell me that she admired me and also couldn't understand how I look so together. She told me if she were me, she doesn't think she would be able to participate in tonight's meeting. While chatting with her, another mom came up to talk with both of us. This other mom lost her premature baby after a six month battle. This other mom sits on the NICU board and she basically said the same thing I did. She said that no one understands her, no one sees that before she enters the hospital, she debates for minutes whether she is up to going in. Her internal dialogue goes like this..... Am I  up to helping someone else? Am I up to accepting that others don't understand and can be insensitive to me? I told her I appreciated her sharing her feelings with me, because we are definitely in the minority, but clearly feeling in a simple fashion.

In the midst of the meetings tonight, I learned that the fish tank Mattie loved on the fifth floor of the hospital has been removed. I can't tell you how upsetting that was for me to hear. I honestly don't know how we would have gotten Mattie out of his hospital room during the weekends without those fish. Mattie felt responsible for them, and would get up and out just to feed them. I am not sure why the loss of the fish tank seems so huge to me, but it does.

I am signing off for the evening because I feel extremely worn out from the day. As I repeat to myself often........ one day at a time, and maybe tomorrow will be different.