Tuesday, August 2, 2011

Tuesday, August 2, 2011 -- Mattie died 99 weeks ago today!

Tonight's picture was taken in September of 2008. At that point Mattie was into his second month of chemotherapy. Since I visited Georgetown University Hospital today, I couldn't help but fondly remember some of the people who made Mattie's days more bearable. These three women, Linda (Mattie's Childlife Specialist), Jessie (Mattie's Art Therapist), and Jenny (Mattie's Art Therapist) will never be forgotten. I honestly do not know how I would have made it through 15 months of hell without them. They were Mattie's normalizing forces and helped him play and talk, under the worst of circumstances. However, what I learned today, ONCE again, is that things never remain the same. Which for a mom who lost a child to cancer, this can be very upsetting and unsettling. I will discuss this feeling below.


Quote of the day: The human heart dares not stay away too long from that which hurt it most. There is a return journey to anguish that few of us are released from making. ~ Lillian Smith

As today is Tuesday, and marks the 99th week of Mattie's death, it seemed almost appropriate to visit the Hospital. I not only visited the Hospital, but walked through the unit, the hallways, and sat in the family lounge. All places that were once my home. I lived within this Hospital for over a year, and at one time the Hospital was my home. It is hard to imagine on some level that I no longer belong there, and it is even harder to imagine that there is staff there who DO NOT know me, who do not know what Mattie battled, nor what we are left behind to live with.

In typical Georgetown fashion, parking was a royal problem today. But frankly I dealt with much worse on admission's days when I had bags, Mattie in a wheelchair, and Mattie feeling sick. Back then traversing the parking lot made me absolutely insane. I can remember this SO well and how sick Mattie was during those visits. Today, I parked on the bottom most level of the garage, and literally dragged Mattie's red wagon filled with chocolate up several floors of the parking structure. By the time I got up to the top, I wanted to say I had my exercise for the week. Outside the Emergency Room entrance, I met Marisa. Marisa was one of Mattie's caregivers during the summer of 2009, and is working with Peter and I on various Foundation projects this summer. Marisa and I delivered LOTS of chocolate to Linda (Mattie's Childlife Specialist) and Alice (Pediatric Nurse Administrator). Actually in total the tally of donated chocolate from my birthday party is down right impressive!!!!
 

Chocolate Bars 390

Mini Chocolate Bars 162

Individual Chocolate Candy Packs 56

Bags of Chocolate 19

Naturally I couldn't deliver chocolate without taking pictures of the Snack Cart. As a reminder, the Mattie Miracle Cancer Foundation is one of the sponsors and funders of this snack cart, which is offered to inpatient pediatric families twice a week. The cart provides nutritious snacks, chocolate, chips, and drinks at NO cost to families. The drawers of chocolate you see here were provided by Mattie Miracle. This is not even one third of what we donated today. The rest of the chocolate is being stored in locked cabinets.

Pictured with the Cart are Vicki, Alice (Pediatric Nurse Administrator), and Marisa (Mattie Miracle Intern)

Pictured with the Cart are Linda (Mattie's Childlife Specialist), Alice, and Marisa

After meeting about the snack cart, Linda, Marisa, and I chatted for a bit. I have some other ideas that I wanted to run passed Linda and it is my hope that we can continue to brainstorm them before I write more about them. Then I sat with Marisa, while she tried to explain Twitter to me. I have enough trouble with Facebook, must less Twitter. But I realize social networking is here to stay, and we as a Foundation have to have a presence. So I will be learning quickly from Marisa. The Foundation has a Twitter account and it is my hope that those of you who Tweet, will follow us by going to our address......... MATTIEMIRACLECF

Here are my observations from today's visit. A few weeks ago Peter asked me if I noticed that all the nurses and staff in the in-patient HEM/ONC unit were unrecognizable. Frankly I hadn't noticed this, but his comment has lingered with me. So after my meetings today, I went to the unit because I heard that Tricia and Miki (two of Mattie's outstanding HEM/ONC nurses) were working there. As I strolled into the unit with Mattie's big red wagon, I was like a deer in the headlights! I recognized NO ONE. I did not recognize the residents, the nurses, or the staff. It almost felt like I was on the wrong floor. A nurse came over to ask me if I needed assistance, which clearly I did! She found Miki and Tricia for me. I chatted with both of them for a while, and then Tricia was called away to a patient and I remained talking with Miki. Miki confirmed my observations. Sarah Marshall, Katie, Kathleen, Erin, Nicole, Laura, and CR are no longer working in the HEM/ONC unit! The only HEM/ONC nurses who work during the day shift that we know are Tricia and Miki, everyone else is new. Perhaps to an outsider reading this, you are saying to yourself this makes sense. There must be great turn over in pediatric oncology, based on the hours, the subject matter, and the incredible physical and emotional demands. I would agree with all of these things, however, there is an emotional angle for a parent regarding this turn over. These women became like family to me. We shared our days and nights together during the most challenging of circumstances. It is like going to war and we all served in battle together. It provides a form of closeness that is indescribable. Not seeing these seven women up on the HEM/ONC unit saddens me greatly. It saddens me because we lost people with the institutional knowledge of Mattie and his battle. It wasn't the physical unit that made this place our home, it was the people, and now that so many of them are gone, in a way it feels like a loss of a grand magnitude for me.

I have no doubt even if these seven women are not at Georgetown per se, their memories of Mattie will always remain with them and they will carry them to whatever job they enter. But the long and the short of it is, I miss them, and I miss having a network of people there who remember and understood what we went through and are going through now. Grief work is about remembering and with each passing day there are fewer and fewer people who want to hear my stories or hear about my feelings. Seeing this visual of a nursing network now gone was a little hard to take.

The second observation also took place within the pediatric unit. As I was talking to Tricia and Miki, I saw a boy who must have been about nine years old, walking the hallway with his mother. He clearly was in pain and his facial expression of agony brought back incredible memories to me. I couldn't take it and asked Tricia and Miki whether this boy had cancer. When I found out that he didn't, I instantaneously felt better. I felt better because I knew his condition was curable and temporary. Not that seeing his pain should lessen how I feel, but somehow something inside me snapped, and viewed his pain as natural and part of the healing process. Rather than a sign of disaster and pending death. I guess as I reflect on today, I can't get over how two simple observations (nursing staff and this little boy) could send me for a loop and cause me to have so many mixed emotions and feelings.