Tonight's picture was taken on March 28 of 2009. I don't think Peter nor I will ever forget this day at the Hospital. It was the unveiling of the children's art gallery. For weeks Mattie and I had been working on projects for this exhibit. Linda, Mattie's child life specialist, asked Mattie to think about what an ideal hospital would be like. Naturally as you can see from the photo Mattie conceptualized this in Legos! Mattie also created a wonderful story about his hospital, which was framed behind his Lego creation. This story remains up in the Hospital's art gallery to this day.
Quote of the day: And gradually his memory slipped a little, as memories do, even those with so much love attached to them; as if there is an unconscious healing process within the mind which mends up in spite of our desperate determination never to forget. ~ Colleen McCullough
Tonight's quote truly fascinates me. It is a reality that anyone who has lost someone near and dear to them understands quite well. With time, the mind finds a way to either block out pain, rewrite what has happened, or it makes certain memories a little less vivid. Certainly that wouldn't be so bad if we are talking about the horrors of cancer and watching a child die a painful death for example. Yet it isn't only the pain that can fade with time, so do the other wonderful and more heartfelt memories. The ones you would like to capture for a lifetime. Such as the exact sound of your child's voice and touch, the way he used to laugh, think about things, and even how he used to smell. The platitude of time heals all wounds is not exactly true because I think it can cause great sadness and even anxiety to know that these memories are fading. Where they even a part of your life? My joke with Mattie's social worker, whenever I see her, is that I long from the days when we had just lost Mattie. The first year of loss and grief, which was horrific and raw, but at least it was very clear how I was feeling and the memories were crystal clear.
I decided to share with you some photos taken from the children's art gallery exhibit back in 2008. This was a close up of Mattie's Lego hospital. In Mattie's hospital he designed hospital rooms for children that were large. They all had private bathrooms, large closets, and an outdoor play and garden area. There were tree houses for the children to play on and they could even watch the helicopters come in for a landing. Mattie designed his Lego hospital to correct for all the problems we experienced in our room! We shared bathrooms with other families, the rooms were very tight and I slept in a chair, there were NO closets, and forget an outdoor play space. It doesn't exist at Georgetown.
I totally forgot about this poem entitled, Intensive Care. I did not exactly write the poem. I was talking to Liz, who was the visiting artist who came to the Hospital to work with the children and families. Liz took a liking to Mattie, and did many projects with him during his stay at Georgetown. Any case, one day while talking to Liz, she captured the essence of what I was saying and transformed it into poetry. She mentions a "noise maker" in the poem. She is referring to our sound machine. One of my former students gave me a sound machine as a gift while we were in the hospital. It was the BEST gift we ever received. We used it every night while Mattie was battling cancer and frankly we still use it to this day. We got conditioned to needing to hear the sound of rain at night in order to sleep. But in the hospital we used the sound of rain to drown out the other more noxious sounds that come from a pediatric intensive care unit! Sounds from machines and other dying children!
Storage, or an assigned room, would be nice;
"Room at an inn,"
For the times we know we'll be back from treatment.
Always moving in, or moving out - sharing the same bathroom;
Showers away from home,
The difficult parking....
All I want is a room with a view, Anything to look at but these blank walls,
The monitor: the steady drip of medicine marching into battle -
Buzzers, bells and footsteps
Marking hours that mock time -
Sounds my noise maker drowns
In a waterfall of rain,
To wash away pain;
Send blessings to my sleeping boy -
And I sit here, amazed at the maze of the hospital;
Stuck here for months on end,
Wanting movement of any kind,
To multiply "child life" by ten,
Support groups; a place to meet other parents
That is not too small, or cold....
Maybe, in my dreams, a terrace
A garden for children to play in, to be with our son
And breathe in open air -
"M's" Mother (Scribe - Liz Pester)
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