Tuesday, September 25, 2012

Tuesday, September 25, 2012 -- Mattie died 159 weeks ago today.

Tonight's picture was taken on April 4th of 2009. This was Mattie's seventh and last birthday. He celebrated it in the child life playroom at Georgetown University Hospital. Pictured with Mattie is his big buddy Brandon. As my faithful readers know, Brandon is a Lymphoma Survivor and battled cancer at the same time as Mattie. Mattie told Brandon one day at the Hospital, that he considered Brandon his best friend. Mattie felt that Brandon understood him and appreciated him, and therefore even under really bad times, Mattie tolerated Brandon in his room and life. It is ironic that despite their age difference, they both provided something that the other needed. Though Mattie is no longer with us, Brandon is a very important part of our lives and he helps to support us at many Foundation events.



Quote of the day: It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.  ~  Rose Kennedy



Today marks the 159th week of Mattie's death, which is ironic because Peter and I returned to Georgetown University Hospital today to host a Mattie Miracle Cancer Foundation Check signing gathering. In so many ways it is hard to pause and think that just 159 weeks ago today, I was standing on the fifth floor of the Hospital. Instead of being in the childlife playroom talking about the memory of Mattie like I was today, I was in a PICU room standing over the dead body of my son. Rather stark contrasts between 2009 and 2012. But in all reality 159 weeks ago is NOT that long at all. In fact for me Mattie's death, his memory, and his spirit remain alive and well in our heads.

Certainly granting the Hospital a check for $25,000 for a second year in a row is a great accomplishment. Peter and I are proud of this, and are very passionate about funding the Mattie Miracle Child Life Program Fund at Georgetown. A fund that helps to employ Jess Abrams, a Child Life Specialist who helps children and their families on scan and procedure days. Days which are very daunting and stress provoking for the whole family system. This program is run by Linda Kim, Mattie's Child Life Specialist. Our family couldn't have made it without the support of Linda, and in so many ways I know Mattie would have greatly approved of our desire to support her through his Foundation. Yet I must admit, that Rose Kennedy's quote was running through my head today. Today was a happy event, another milestone event for the Foundation, and yet within us we carry pain. A pain that is always there, we are forced to find a way to live with it, and I know no amount of Tylenol or aspirin relieves the symptoms.

In the picture above you saw Mattie with Brandon sitting at the same exact table you see in this picture. We had a check gathering in the child life playroom. This is a room Mattie loved and a room which kept us sane, during very challenging and isolating times. To the gathering, I brought a cake and 24 Mattie cupcakes. Though it is hard to see this, the cupcakes had butterfly candies on top of them. Certainly it would have been easier for me to buy cupcakes, but for me it was important I made them. It is a tribute to Mattie, since these were his incentives to do physical therapy and other tasks he did not want to perform at the Hospital. I must have baked 100's of cupcakes when Mattie was battling cancer. I miss the opportunity to do this for him now, so instead I make his cupcakes so others can enjoy them. I have come to the conclusion that almost everyone likes cupcakes.

 

 

 

The cake also reminded me of Mattie with its butterflies and lady bugs. Mattie liked bugs, but I thought a frosting roach on the cake would not be appreciated unless you truly understood and knew Mattie. Lady bugs were safer! The cake read, "Supporting Children One Mattie Miracle at a Time!"

 

Pictured here from left to right are Brandon, Katie (a Child Life Specialist), Vicki, Linda (Child Life Coordinator), Jess Abrams (Child Life Specialist), Ann (Mattie Miracle Board Member), and Peter.

 

Pictured from left to right are Brandon, Jamie (a HEM/ONC nurse), Meg (a HEM/ONC nurse), Tim (Associate Administrator, Department of Pediatrics/Development), Anita (one of Mattie's outstanding HEM/ONC nurses and HEM/ONC nurse manager), Vicki, and Peter.

 

At the end of our event, Debbi (Mattie's sedation nurse angel) came by to visit. Debbi was in a procedure, but made a point to see us. Pictured from left to right are Peter, Ann, Brandon, Debbi, and Vicki.