Tuesday, November 20, 2012

Tuesday, November 20, 2012 -- Mattie died 167 weeks ago today.

Tonight's picture was taken in November of 2002. Mattie was seven months old and one of the things that absolutely fascinated him was a camera and especially the flash of a camera. Peter was holding Mattie in this photo, and as you can see reflected in our mirror, Mattie was very focused upon the light. It practically stopped him from all wiggling and moving around.


Quote of the day: From childhood's hour I have not been. As others were, I have not seen. As others saw, I could not awaken. My heart to joy at the same tone. And all I loved, I loved alone. ~ Edgar Allan Poe


The highlight of my day today was going out to lunch with my friends Ann and Heidi. We had a nice time chatting about all sorts of things and though the holidays are coming up, this wasn't our focus. Holidays are times for so many which produce mixed feelings. For us, holidays are just not the same. It is hard for me to hear about Christmas shopping, decorating, parties, and the list goes on. There is great guilt associated with holidays and I honestly feel like others just can't relate to me during this season.

Thanksgiving isn't a holiday with wonderful memories for us either. The last Thanksgiving as a family was in 2008. Mattie was home recovering from his limb salvaging surgeries. I recall that day as if it were yesterday. A day neither Peter or I will ever forget. Mattie was in terrible pain, felt isolated, couldn't move or use his body, and his mood was extremely depressed and his anxiety level was threw the roof. Peter and I were walking on egg shells that day. I turned on the TV and sat with Mattie as we watched the Macy's Thanksgiving Day parade. But this distraction did not help matters at all. There was no pleasing Mattie that day and when I reflect on that moment and so many others, I just do not know how any of us survived through this battle. Despite how worn out we were, Peter and I never snapped at Mattie. EVER! We understood what he was up against and how awful his existence was. We absorbed a lot of his pain, fears, and emotions. So many of these feelings remain with us today.

This evening I headed back to the Hospital for a parent advisory board meeting. Last month I wrote a letter about some of the issues Peter and I experienced with the hospital admission process. There is a great deal of redundancy with the admissions process, and worse as a cancer patient, we would have to take Mattie to the outpatient clinic first. Once Mattie had his lab work and met the criteria for an infusion of chemotherapy, I would then have to walk from the clinic to admissions to get Mattie admitted to the hospital. The admission never happened directly from the clinic. That may not seem like a big deal, but it is when you are worried about your child, you want the chemotherapy process to start as soon as possible, and keep in mind that Mattie was in a wheelchair. Rarely did Mattie want to leave the clinic to be wheeled to admissions. So if I left him in clinic, I had to make sure someone was there to watch over him while I dealt with the admission process. When I think about the lost hours commuting from the clinic to admissions, we are talking double digits! Needless to say, one of my admissions issues has been resolved and now childhood cancer families will be able to get their children admitted to the hospital directly from the clinic. Side stepping having to walk to the main admissions department. This is a wonderful new change and I am happy that my letter could cause this streamlining. Streamlining which will save a parent time and energy.

Nonetheless, at the meeting there was talk of holiday parties. Parties for the kids and fundraising parties for the pediatric programs. Regardless of the nature of the parties, just hearing about them made me sad. This is the problem with being the only bereaved parent on the board. Others just can't relate to my feelings, even those who have experienced childhood cancer. Being a bereaved parent puts me in a whole other club, one that I would trade admission to any day.