Tonight's picture was taken in March of 2009. I will never forget this day! It was a party to celebrate the opening of the Children's Art Gallery at the Hospital. For the event, Mattie created a story, which was typed up and framed and Mattie also designed a Lego structure of his version of the ideal hospital room! Mattie was very proud of his made up story and Lego creation and seeing his words up in the Children's gallery will always be part of his legacy!
Quote of the day: If you’re going to live, leave a legacy. Make a mark on the world that can’t be erased. ~ Maya Angelou
This morning, I got myself together, made breakfast and was determine to get a hold of my dad's doctor by phone. My dad has been struggling with laryngitis and a head cold since Saturday. Today his symptoms were better, but I honestly did not want to take a chance with fluid build up in his lungs. So I rather hear from the doctor that my dad is fine.
However, before taking my dad in, I had my own appointment with my kidney stone doctor. I go yearly for a check up, because I want to prevent more stones. I have dealt with six stones in total so far, and I am hoping never to have another one! My doctor is at Mattie's hospital in Washington, DC. Parking at this hospital is always challenging, so when I am feeling well, I park in the neighborhood instead and then walk onto campus. It is much more pleasant and less stressful!
While walking on campus, I ran into the director of child life. I honestly can't visit this hospital without meeting someone we know. Naturally Mattie was treated and died at this hospital, yet this hospital holds special memories for me. It was a hospital that gave us hope and was committed to Mattie's care, when other well known cancer institutes wrote Mattie off. I will never forget a major institution in NYC, telling Peter and I not to treat Mattie's cancer. To just go directly to palliative care. Certainly the outcome is what they predicted.... Mattie died. But the big difference is we had 14 more months with Mattie, and in that time we made memories together. In addition, I don't have doubt or live with guilt because I know that we tried everything humanly possible to save Mattie's life!
Whenever I visit the hospital, I always check out the Children's Art Gallery.
I purposefully go to this gallery to see if Mattie's words are still on display! To me this is a legacy item and Mattie's story captures many aspects about how he felt about living life in a hospital. The feeling of being trapped, of being kept inside, rather than having the freedom to go out and eat what one wants to eat. I think the story also depicts Mattie as the hero of the day. He clearly perceived himself as a fixer, and the fact that I used to call him "my little engineer," was some how captured in this tale.
Once upon a time in the Lego City, there was a hospital made of Legos. It had a hot tub with a scrub brush, a computer, and a huge garden with a fountain and a parrot and flowers and trees, and a bench to sit on and read and enjoy the fresh air. It also had a playhouse with a swing. Some people called it a "tree house," because there were trees on top of it. You got into it by climbing up a ladder. There was also an ambulance, a stretcher, and a helicopter.
After leaving the hospital, I couldn't help but notice the beautiful trees! The magnolias are beginning to bud!
Spring has sprung. Cherry trees and magnolias are in bloom in Georgetown!
This brick structure is part of the new hospital. It is still under construction. This was once one big open space, that we traversed many a day when Mattie was in the hospital. It is hard to see things change, but I also know it is needed. Though I am very fond of Mattie's hospital and it has outstanding health care providers, the infrastructure is a nightmare. It is my hope that this new space can bring the facility into the 21st century.
One day at the Lego hospital, there were two bad boys, Steve and Paul. They didn't like the food there, so they planned an escape to The International House of Pancakes. First they ran to the IHOP, but they got caught by Joe, the helicopter pilot, who spied them as he was flying by.
Next, they stole an ambulance, and this time they made it to IHOP, but crashed the ambulance in the parking lot. They even managed to get a table before Joe, once again found them and flew them back in the helicopter.
Luckily the hospital had Mattie, the engineer, who was able to fix ambulance.
Next Steve and Paul snuck out, and while Joe was getting reprimanded by the hospital staff for spending all his time chasing down the boys, and not rescuing people, the boys stole the helicopter! Again, they crashed into the IHOP parking lot. But this time they were able to sit at their table, and order a nice stack of pancakes. But, just as the pancakes arrived at the table, steaming hot, in drove the ambulance driver, Sam, right into the restaurant, crashing into the pancakes!
So Sam drove the boys back to the Lego hospital, and waiting for them there were their parents! They were angry. Thankfully, Mattie the engineer was able to fix both the helicopter and the IHOP.
The boys' parents then agreed to pay to have pancakes delivered fresh daily, to the boys in the hospital.
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