Thursday, October 26, 2017

Thursday, October 26, 2017

Tonight's picture was taken on Halloween 2008. This was Mattie's last Halloween with us. Mattie went trick or treating at both the hospital and in his friend's neighborhood in the evening. Mattie was very concerned about his costume because he wanted to find something that covered his bald head and also hid the fact that his right arm was in a cast from limb salvaging surgery. Mattie picked this costume out himself and I think he did a great job. 

In fact, a nonprofit provided costumes to children at the Hospital. Mattie's art therapists understood that he was very self conscious and protective about his arm, so they allowed Mattie into the clinic before the other children to examine and try on costumes. This was a very thoughtful and sensitive gesture that truly made a difference for Mattie. Because I think if other children were around, Mattie would never have picked a costume out since he was concerned other kids bumping into his arm and crowding his space. 


Quote of the day: Beauty is how you feel inside, and it reflects in your eyes. It is not something physical. ~ Sophia Loren


This week I had a conference call with an undergraduate studying interior design. She contacted me because she is interested in doing her design thesis on the importance of design and space in the treatment of children with cancer. Her brother is a cancer survivor, which is why she knows first hand the importance of aesthetics in healing. In fact, various studies have linked the physical environment of hospitals to health outcomes. 

I had a very productive conversation with this young woman and commended her on her subject choice. Because I think more attention needs to be paid to the overall layout and design of pediatric care units. Though Sophia Loren's quote points out that beauty is what you feel inside, I know she did not have childhood cancer in mind or saw Mattie's hospital unit when she expressed this thought!

As I told this design student, I remember very vividly the first time (August 2008) we saw the pediatric units at the hospital. We were admitted to the hospital for Mattie's first round of chemotherapy and walked from the admission's department to the elevator. When the elevator door opened up on the pediatric floor, I was hit by BLUE. Not just any blue, but chlorinated pool water blue! I literally was so taken aback by the BLUE, that I wanted to jump back into the elevator and escape! Of course I couldn't! 

Needless to say I felt like the blue captured my feelings...... drowning in a large pool and unable to save myself or Mattie. I am posting a few photos of the blue hallways here so you can literally see what I am talking about. 

I know someone gave this color great thought and I suppose it is better than  white washed walls. Or is it? All I know is I despise this color and you won't see me wearing this color or capturing this color in anything I do! 

Now don't get me started on the LARGE underwater themed mural in the pediatrics unit. If you separated the mural from its context (being in a hospital), I most likely could appreciate it more. But given that the entire floor is pool blue, seeing this mural only exacerbates the drowning feeling. Feeling out of control, helpless, and depressed. You feel this way already, but why should the aesthetics of the environment add to this horror?

I shared my feelings with this student but that isn't where our conversation ended. She wanted to connect with me about our Psychosocial Standards of Care that Mattie Miracle funded. She wanted to learn more about them, more about the emotional impact of childhood cancer on children, their parents and siblings, and wanted my input on how designing a more effective space for treatment could help alleviate some of the stresses families feel throughout their journey. 

Ironically I happen to know an interior designer who has done work at Mattie's hospital. How do I know her? Well she has a son Mattie's age, and her son and Mattie were in kindergarten together. I am very happy that I could connect this student to this interior designer who has specific experience with designing hospital units and is also familiar with how to get such a redesign financed. Overall it was a positive call, and I look forward to reading her research proposal. All I know is Mattie's cancer experience guides me in all aspects of my life, and frankly I would not have guessed that it would have led me to talking to an interior design student. Nonetheless, I am very happy to see a student focused on making a difference in the lives of children with cancer and their families.