Tonight's picture was taken on July 24, 2008, the day after Mattie was diagnosed with cancer! When you look at that face, to me he didn't look like he had cancer. Mattie had rosy cheeks and other than arm pain, the rest of him looked fine. Looks are deceiving. That day we brought Mattie into the outpatient clinic at the hospital. Alongside his art therapists, he built the boat you see floating in our tub out of a box. Mattie loved boxes, and his therapists learned that lesson quickly. Naturally the therapists had just met Mattie, but Mattie loved to create, and within a few weeks, the art therapists became his close friends.
Quote of the day: Life belongs to the living, and he who lives must be prepared for changes. ~ Johann Wolfgang von Goethe
I went to the hospital today to push around our Mattie Miracle snack/item cart through the three pediatric units. I try to do this once a month for many reasons. First and foremost, I want to see the cart in motion and interact with the families in the units. Second, I want to see what items are popular and needed.
Some parents who have lost a child to cancer refuse to return to the hospital, much less ever visit the floor their child was treated on. For years now, I have been visiting the 5th floor of the hospital without a problem. The memories of Mattie's presence on that floor never bothered me and when you live in a place day in and day out for over a year, which was what we did when Mattie was battling cancer, it becomes NORMAL to you. So the physical space doesn't bother me and seeing the patient rooms is also okay. When I push the snack cart around through the units, I am naturally going into rooms, rooms Mattie once occupied. Rooms which hold a lot of memories, not to mention room #10 in the PICU, where Mattie died. This is a room I will never forget.
Yet I have noticed for the past few visits after I push the cart I am agitated. Why? Well I had to think about that today. It isn't like the space bothers me, nor seeing sick kids is a problem (doesn't that sound awful, that I should be okay with this!). I think I can say this, because with Mattie I saw it all, so not much is going to shock me, or even wear me down. But what does wear me down is seeing a place change. As Goethe's quote points out, change is inevitable and part of living. I totally agree, but some changes are harder to swallow and accept. When I see most of the staff who used to work with Mattie and me gone, it signals to me that the institutional knowledge that housed Mattie's battle, that understood what Mattie was like as a child, and knew about our struggles as a family is all gone. In a way, when I push the cart now, I am just some lady visiting the hospital, pushing an orange cart. I am no longer Mattie's mom to the staff I see. So all of this greatly saddens me, because it is the people who make up an institution, not the walls and facility. It almost feels like Mattie never existed in these hospital units because I have few people left to remember those moments and to keep his memory alive.
Sure you could say Mattie has been dead for almost 8 years now. But in my opinion that is just a number. It doesn't mean that reflecting and sharing memories is any less important. In fact, I would almost say it is MORE important. So the question is, what to do with these feelings? How to manage such changes? After all, I need to answer both questions, if I am going to be able to visit the hospital monthly. These are today's feelings, but I would say each day I am faced with the same question... how am I going to manage__________ (fill in the blank). Losing a child can paralyze you as a parent so much so, that you are constantly analyzing, re-evaluating, and trying to figure out your place in the world.
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