Quote of the day: "Gratitude is the memory of the heart." ~ Jean Baptiste Massieu
Before I tell you about Mattie's day, I want to acknowledge the passing of another wonderful child who we have had the opportunity to get to know at Georgetown. This child did not have cancer, but was waiting since October to have a transplant. This family is from Rhode Island and temporarily relocated here to attend Georgetown, because of its unique transplant program. We have watched this child go through so much since October just to stabilize him to qualify for a transplant. I found out this news today from Brandon, who text messaged me. Peter and I are deeply saddened to receive this news and we can only imagine how these parents feel, since they practically lived at the hospital for the past several months to assure the healthy return of their son. The irony is before Mattie's diagnosis, I understood this kind of pain (the loss of a child) on a cerebral level, but now such news profoundly affects us. Living in a PICU has opened up my heart and mind to pains really no one should have to see, feel, or even imagine. Please keep this family in your thoughts and prayers, since God is forcing them to deal with and accept the impossible, the death of a child.
Mattie woke up with a lot of energy. I received an e-mail from Ann last night who invited us out bowling with her children today. Mattie's school is officially on spring break, so this seemed like the perfect opportunity for him to have a social experience. I told Mattie about bowling when he woke up, and he seemed interested. You need to understand that Mattie could bowl at this alley, because they have metal ramp structures which you can place the ball on top of for your child and all he would have to do is push the ball down the ramp with his hands. However, as the time approached in the day for Mattie to get out of his pajamas and get ready to go, he balled up and had a major mood change. He did not want to leave our house, nor did he want to get dressed. I tried to get down to the bottom of this refusal, and he explained that he did not want to go bowling because he was scared. He wouldn't elaborate on this but I assured him no one was going to judge him and I would be there every step of the way with him. He was listening, but then continued to tell me he did not like the smells in the bowling alley or the noise from the music. Such sensory comments are nothing novel for me to hear from Mattie. He had lots of sensory issues when he was a toddler and preschooler, but worked his way through many of them, thanks to his occupational therapist, Kathie. However, we have definitely taken some steps backward this year, and have reverted back to previous coping mechanisms, which involve shutting out parts of the world. I tried to talk with Mattie about bowling and encouraged him to give it a try. I told him if he wasn't happy after he tried bowling we could leave the alley and that would be fine. But the more I pressed the issue, the more I could see Mattie getting further upset. So needless to say, we never really worked through this today, and we also never left the house. Which I can assure you made for an extremely long day of playing and supervision.
So how did we spend our day? Well first Mattie played with cars, washed several of them, and dried them. Then we played with a big rubber ball together. We threw it back and forth to each other, and Mattie even wanted to dribble the ball. He was getting frustrated that he couldn't do it very well, but I kept encouraging him, so he wouldn't give up trying. Needless to say he got some exercise today, which I was happy about. He stood on both feet, balanced, and even took a step or two!
Mattie and I spent the rest of the day designing a hospital out of legos. You may recall that I created a canvas for the art show at Georgetown that addresses the question, "What should a hospital be like?" Mattie tried to answer this question by designing something in legos. He hasn't wanted to participate in this project, but today I explained to him that the show was going to be next week, and if he wanted to display something, he had to build it. He thought about it for a while, and asked me if the art work was going to get judged. I said NO! I told him that everyone's art work would appreciated. This is exactly what Mattie needed to hear. At first I was contemplating getting Mattie a predesigned hospital lego set that he could put together, but then Peter encouraged me to allow Mattie to freely think about this himself without a set design to follow. That was a great idea, because some wonderful things unfolded today. Check out Mattie's hospital!
Left: An aerial view of the hospital! On the left, you will see a tree house with a ladder, and a garden area with a fountain and trees. It isn't pictured but there is even a swing under the tree house! In the middle of the display is the hospital room and underneath it is a pool like shower. On the right is where the ambulance comes into the hospital along with a helicopter transport!Right: A closer view of the garden area. There is a parrot sitting on the fountain, and the fountain even has a gold lego coin inside of it, for good luck! There is a bench in the garden and the fountain is surrounded by trees.
Left: A close up of the patient's room. The bed has a smiley face on its head board! The room has a gold table, with a computer on it, two chairs, and a pole lamp. The irony is the room is about the same size as our room at Georgetown! That made me laugh.
Right: The pool like private shower/bathtub!
Left: A closer view of the ambulance bay and heliport!
Mattie even had a visit from JJ (our resident Jack Russell Terrier) today. But Mattie was in a very private mood, and wouldn't even talk with JP or acknowledge JJ. Mattie's moodiness can be hard to handle, but fortunately I haven't seen this type of moodiness in a while. I think a part of it was caused from a very long and taxing day at the hospital yesterday. I think he really needed the time to unwind. I was thrilled to see Peter tonight when he walked home from work. I literally gave him time to change and then I headed upstairs and slept for two hours. I was so tired, that I could bearly function. While I was sleeping, Peter and Mattie built together and even got outside for some fresh air.
When I woke up, I prepared the lovely dinner that the Phillips' family dropped off for us. Thank you for the homemade chicken. It was delicious and we all enjoyed it. Mattie also loved the animal crackers and I know he will love using the kite. He loves flying kites! Thank you for supporting us today. Mattie received a lovely hand made card in the mail for healing from the 3's sunday school of St. Paul's Episcopal Church. Thank you for thinking of Mattie and keeping him in your prayers.
I end tonight's blog with a message I received from my friend Charlie. Charlie wrote, "I am grateful today, for the results of the scans and for the kindness of all those who helped Vicki and Mattie navigate the difficulties of yesterday at the clinic. So to all of you, both named and unnamed in Thursday's blog who made the day more pleasant for Mattie, helped Vicki get what was needed to make things happen, provided food, emotional support, kind words and prayers, go my sincere thanks. As usual, the best laid plans never seem to work out the way they are supposed to but thank goodness it all got done and the news was good. I know it would have been far more difficult without assistance from so many helping hands and hearts, so this poem is dedicated to all of you..."
For each new morning with its light,
For rest and shelter of the night,
For health and food, for love and friends,
For everything Thy goodness sends. ~ Ralph Waldo Emerson
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