Tonight's picture was taken in March of 2003. This was Mattie's first plane trip to Los Angeles, and his first experience dealing with a time zone change. While the rest of us were exhausted, Mattie awoke at 4am for several days in a row. His body was telling him it was morning, despite our best efforts to get him back to sleep. So though you may not be able to tell from this picture, it was taken at 4am, Peter and I were half out of it, but Mattie was alert, fully on, and ready to start playing and engaging with the world. I remember how exhausted we were during those days and I had no idea the level of exhaustion could get much, much worse. In fact, living with Mattie's cancer in a hospital 24 by 7, had to be one of life's greatest tortures. It wasn't only a question of physical endurance, but there were the mental, social, and emotional endurances that were off the chart!
Quote of the day: Recovering the sacred is remembering something we've forgotten, something we may have hidden from ourselves. It is about uncovering and discovering the innate wholeness in ourselves and in the world. ~ Dr. Naomi Rachel Remen
Today I tackled a closet in Mattie's bedroom that I haven't touched in YEARS! Though I dread closet cleaning, I decided with the weather being crummy this was the perfect day to get this over with. To my surprise in Mattie's closet was about 12 photo albums I had stored. In a way, going through these albums were like "recovering the sacred" as tonight's quote so aptly discusses. I had forgotten about the albums being stored there and even about aspects of my life captured in these photographs. Though I still take a lot of pictures, everything is digital now. So I no longer develop photos and have to organize them in albums. A real thing of the past! On one hand it makes picture taking a lot easier and certainly there are no piles of photos to organize or to collect dust. But there is something actually quite tangible and meaningful about holding and seeing a real picture. Peter and I went through about half of the albums and observed and relived our college years, our graduation, his time in business school and his graduation, our wedding, moving into our apartment, our honeymoon trip, and even my baby shower. It was like a trip down memory lane, memories that were trapped inside, and I forgot about. Since Mattie's cancer, nothing really permeates my feelings, and it seems like I have lived two lives..... the life before cancer and the life after cancer, and the two have yet to unite. I am not sure they ever will.
Basically, I had no idea that cleaning out a closet could actually be taking us on a trip of self-discovery or better yet be faced with photos that uncovered a timeline of our history together as a couple. Needless to say, this clean-out project occupied most of our day.
On an unrelated note, so many of you are contributing to Mattie's 10th birthday remembrance drive. We are so grateful and appreciative. Today we opened up a surprise box that came in the mail yesterday. I wasn't expecting this box at all, but when I opened it, I found Sponge Bob bandaids (one of Mattie's favorite characters, mainly because he knew I disliked Sponge Bob) and all sorts of keurig kcups to bring to the hospital. In a way, it felt like my friend had sent me a birthday gift in honor of Mattie, and it made me feel very special and remembered. It is very challenging to be a mom who lost a child to cancer. At times I absolutely resent my friends and am quite jealous of them for what they have. I also know on some level they can't and will never understand the depths of my loss. Which is a good thing for them. When my friends celebrate their child's 10th birthday, they land up sending out invitations, planning parties, getting a cake, and watching their child open up gifts and interact with friends. I do not have any of these simply pleasures or tasks anymore. Instead, in order to celebrate Mattie's birthday, we have to create specific venues, like this birthday remembrance drive. Yes we keep his memory alive, but it isn't the same as having him with us.
As promised, I will continue to share photos with you from the Symposium over the next couple of days...............................
In this picture are Peter and I with four out of the five psycho-oncology professionals who conducted a briefing and hosted several research sessions at the Symposium. From left to right are: Bob Noll (from Children's Hospital in Pittsburgh and the chair of the behavioral sciences committee of the Children's Oncology Group), Anne Kazak (from Children's Hospital of Philadelphia and the Scientific Chair of our Symposium), Andrea Farkas Patenaude (from Dana-Farber Cancer Institute), and Lori Wiener (from the National Institutes of Health).
I entitle this photo, "the Moms!" From left to right are Toni Johnson (Brandon's mom), Terri Tomoff (Ryan's mom), Vicki, and Annie Gould (Eloise's mom). Two of us have children who survived and Annie and I both lost a child to cancer! Toni and Terri are friends I met through Georgetown University Hospital. As my faithful readers know, Toni and I battled our sons' cancers together! Whereas, I met Annie (who lives in a different region of Virginia) after Mattie died, while lobbying on the Hill with CureSearch. Annie and I have remained connected ever since and I am honored that she journeyed to DC to attend the Symposium.
As people were registering and the event was unfolding, Sheryl (our photographer) captured my discussion and facial expression I had while talking to Samantha. Samantha works for Mercury, LLC, the lobbying firm that took Mattie Miracle on as a pro-bono client. Though I planned the Symposium and truly spearheaded the entire event, I did go to Samantha for help and guidance on various issues. So when she came for the morning, we were both happy to see the event taking place and with great attendance.
Peter was chatting with Tim. Tim has become an amazing Mattie Miracle supporter. He attends all of our events and he is not only a Georgetown University Hospital administrator, but he has become our friend. Tim plans many events for the Hospital, and he understands the thought, effort, and energy that such planning involves. When Tim sent me an email about the success of the Symposium on Tuesday night, I felt that his thoughts and feelings were a real gift sent to me by someone who truly gets the complexities of hosting such an historic day!
Sheryl snapped a picture of Peter and I before the congressional briefing started. At that point there was a lot of energy in the air, and Peter and I knew we were not only the hosts of this event, but we also had to keep it flowing, interacting with people, and explaining to others the mission and goals of Mattie Miracle.