Saturday, March 28, 2009

Saturday, March 28, 2009

The poem featured in this picture was written by Liz Pester. Liz is one of the artists who works at Georgetown. Liz met with me one evening while I was staying in the PICU. Based on our conversation she created this poem about HOPE. An important word to Team Mattie. This poem is framed and featured in the Children's Gallery at Georgetown.

Quote of the day: "Snowflakes are one of nature's most fragile things, but just look at what they can do when they stick together." ~ Vesta Kelly

None of us could get up this morning. A week in the hospital wore us out. When we did wake up, I made Mattie homemade waffles and then we all got ready for the day ahead. Mattie was very excited to see his Lego hospital featured in the Children's Art Gallery at Georgetown. Today was a day about connections, community, and artistic expression.

When we arrived at the Hospital, we entered the first floor hallway where the Children's art gallery is located and we met up with Linda. Mattie was happy to see her. I am thrilled this event was on a weekend, so that Peter could experience the caring community I have been describing day after day in the blog. After talking to Peter one weekend, I realize we experience the hospital differently. I am not sure why that was a revelation to me, but it was. Of course it makes sense though. Peter works during the day, and comes to the hospital after hours. After hours when Linda, Jenny, Jessie, Linda's interns, and most volunteers are not around. I could try to describe how fabulous having these ladies around is, but I assure you no description does it justice. Sometimes you have to just live it. Peter lived it today, and I think after leaving today's event he felt energized. We are thankful to be a part of Georgetown's community, and to have an event to celebrate the artistic talents and expressions of the children was simply special and memorable.

Mattie was motivated to find his Lego Hospital shortly after we arrived. I think he was curious how his hospital was going to be displayed and he also was looking forward to seeing his story in print. As a recap, when Mattie made this Lego hospital at home over a week ago, Mattie and I landed up playing with the set. We created a whole story about two bad boys who were patients at his hospital. In any case, this week, Sally the story lady captured this story on paper. It was very special to see Mattie's story in print and framed. Laura, one of Linda's interns, took some pictures of us in front of Mattie's creation. You will notice two framed posters behind us. One is Mattie's story and the other is a poem that one of the hospital artist's created based on a conversation I had with her one day in the PICU. I was so surprised to see my words placed into poetry!

Since you can not see the actual story in the picture, I copied Mattie's story below for you. In fact, Peter read Mattie's story aloud to a crowd today at the hospital. Mattie watched on, very proudly! Below Mattie's story, I also copied the poem that Liz created based on our conversation. She entitled the poem, Intensive Care. Enjoy!

MATTIE'S STORY!

Once upon a time, in the Lego City, there was a hospital made of Legos. It had a hot tub with scrub brush, a computer, and a huge garden with a fountain and 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 by climbing up a ladder. There was also an ambulance, a stretcher, and a helicopter.

One day at the Lego Hospital, there were two bad boys, Steve and Paul. They did not like the food there, so they planned an escape to The International House of Pancakes. First, they ran into the IHOP, but they were 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 the 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 agreed to pay to have pancakes delivered fresh daily, to the boys at the hospital.

Intensive Care

Storage, or an assigned room, would be nice:
Room at an inn,
For the times we know we’ll be back
For our child’s 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 that my noise-maker drowns out
In a waterfall of rain, to wash away pain:
A blessing on my sleeping boy.

And I sit here, amazed at the maze of the hospital:
The noise…. 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.

For M’s parents, and for all…..

By Liz Pester, Studio G artist

Brandon and his mom, Toni, also came to today's event. Brandon is a good influence on Mattie, and I am happy that he plans to make frequent visits to the hospital. I took a picture of these two buddies together. I am not sure who is cuter!

There were a lot of artists present today at the event. Many of whom we knew, because they work with Mattie during the week. Jude, a musician, was there with his musical instruments, and had all the kids singing and tapping to the beat. Peter joined in the fun. In fact, Peter had a great time with Jude. Peter is very musical and has a beautiful singing voice. He and Jude landed up singing the afternoon away. I snapped a picture early on of the singing circle, but as the afternoon progressed, Peter was standing next to Jude and a fiddler, and they were all harmonizing together.

While Peter was singing, Mattie decided to remove himself from the noise. Mattie did not like the loud sounds, and keeping Mattie still these days is a feat. So he instead spent the afternoon, on his own private roller coaster. He sent his wheelchair down the ramp of the Children's art gallery numerous times. Mattie was making it into a game, as he tried to collide into people as he zoomed down the ramp. Of course we never allowed this to actually happen. His racing buddy, Meg (one of Linda's interns) was there, and Meg spent a great deal of time running up and down the ramp with Mattie. Linda and Jenny got involved as well. Kathleen, one of Mattie's great HEM/ONC nurses was working today. Kathleen is a big Mattie supporter! Brandon went up to get Kathleen and alerted her that Mattie was here. Kathleen knew Mattie would be at the hospital today, and was looking forward to seeing Mattie's Lego set! Kathleen was a good sport, and watched Mattie go down the ramp, and practically run her over. Check it out!

Left: In the picture you will see Meg running with Mattie. Kathleen is bending down to catch

Mattie, and Laura is watching the whole process!

Right: The Group!

In the back row: Peter, Vicki, Meg, Jenny, and Linda

In the front row: Kathleen, Mattie, and Brandon

We had a lovely time at Georgetown today. I want to commend Linda for her efforts. She worked hard at framing and positioning each piece of art. In fact, it was Linda's idea to transform this bleak hallway into a Children's Gallery. Something the hospital GREATLY needed. Linda advocates for her children and their needs, and every time I walk down this hallway, I will remember today. Even years from now. I am happy we went because this is a memory I don't want to forget.

As we left the hospital, Mattie had goodies with him, a big rainbow balloon and several cupcakes. Upon leaving, Peter had two comments. The first was, he saw why I love aspects of being at Georgetown. The second observation he had was he noticed that Mattie has a certain magnetism. Mattie seems to win the hearts over all those who work with him. He is my son, so I naturally love him and think he is special, but when I see others treat him in this fashion, it just makes me smile.

When we got home, I had to contend with laundry. I wanted that out of the way, so that I could pack up again tomorrow to head back to the hospital on Monday! While doing laundry, we had a lovely visit from JP (our neighbor). JP introduced us to his mom, Jackie. Jackie is visiting from Spain. She brought Mattie a cute stuffed bull and mug. We had a delightful visit with Jackie and Mattie also appreciated the dunkin donuts they brought.

Tonight we had a lovely family dinner together. Mattie joined us at the table, which he doesn't always do now a days. He even said grace. We want to thank the Kelliher family for a lovely and generous dinner from the Daily Grill. Mattie loved the pasta and pie and we loved the fresh fish and wonderful vegetables! As we head into Sunday, Liza (one of Mattie's favorite hosptial volunteers) will be coming over to spend some time with Mattie so Peter and I can get a break for a couple of hours. It is hard to believe we go back in on Monday for a week, but even harder that we are entering our 9th month on this cancer journey.

I end tonight's posting with a message I received from my friend Charlie. Charlie wrote, "Two things came to mind with Friday's blog. One was how much better and smoother everything goes when you work together. There were lots of examples of great teamwork between you and Pete, the physical therapy people who worked with Mattie, the GWU bake sale, etc. Amazing how much more we can do when we work together; the whole is often more than the sum of the parts. The other feeling I had from the blog was humor and laughter. How much brighter is the day and lighter the load when we can find something to smile or laugh about? Watching the adults ham it up when racing with Mattie, imagining Mattie singing them to sleep with a lullaby, just brought a smile to my face. I am glad to hear that both you and Pete got to spend some time with others; as you well know, part of staying healthy under stress is maintaining connections as much as possible. I am glad you were both able to get out for a while. I reflect on how far you've come in a short time; it was not very long ago that you could not leave for even five minutes without Mattie panicking; now you are able to spend some time away to everyone's benefit. I hope that we continue to progress on this positive route."