Monday, December 29, 2008

Monday, December 29, 2008

Quote of the day:
"While we try to teach our children all about life, our children teach us what life is all about." ~ Anonymous

This quote captures how I feel about Mattie. In the past five months he has taught me so much, and he continues to teach me things about life, hope, people, and courage. Today Mattie said good-bye to his aunt, uncle, and cousins. They headed back to Boston. Peter told me that Mattie was upset that they left, and as Peter and Mattie were headed to the Lombardi Clinic for a blood draw, to see how his counts were, Mattie asked Peter why bad things happen to him. Great question, if we only had the answer to such a profound question. Peter handled Mattie's question very well, and Peter always reminds Mattie that nothing about this disease is Mattie's fault. That he did nothing wrong. But it is hard to see a six year old having to spend his life confined, in pain both physically and psychologically, and basically not being able to be a child. It is a nightmare of grand proportion, but unfortunately this is a dream I never wake up from, this is our reality. Seeing other happy and healthy children in our lives further illustrates to us how profoundly different our world is. We as adults have trouble processing all of this, so I am not surprised Mattie has a lot of questions about his condition. As an adult, we can try to see the bigger picture. We can understand that we are growing and learning and that others are gaining insights from this traumatic experience too, but to a child, this big picture does not matter. What matters is the here and now, and the here and now is a picture of confinement, isolation, pain, and a lack of control over one's life and body.

After Mattie's clinic appointment, Peter took Mattie for a wheelchair ride on Roosevelt Island. Roosevelt Island is a wonderful nature preserve that we always enjoyed going to as a family. I think Mattie enjoyed this time with Peter and also the fresh air. Mattie even ate half of a hamburger today, which was a wonderful accomplishment on his part. When they got back home after their adventure, Peter carried Mattie upstairs, because Mattie wanted to see me. I have been pretty much lying low for the past two days because I don't want Mattie to get sick with what I have. However, Mattie said he missed me, so Peter carried him into our bedroom, and Mattie sat with me on my bed. He came over to cuddle with me, rubbed my head, and said that he loved me. He spent at least two hours with me, and he told me about all the birds he saw on Roosevelt Island such as cardinals, blue jays, and even an eagle. I told Mattie that he was the best medicine I received in two days. There is nothing like a Mattie hug!

I want to thank JP (JJ's owner and our neighbor) for a wonderful lunch today. We all enjoyed the pasta and pizza, and I LOVE the teas. They are delicious and are helping my throat. Thank you for thinking of us always. We also want to thank the Chiaramonte family for the wonderful homemade soup tonight. It reminded me of Italian wedding soup. Soup is a great medicine! We look forward to tasting the incredible caramel brownies too and I appreciate the "create a book" set you gave Mattie. I hope this will inspire him to create a story!

As we head into tuesday, I am still sick. I am running a fever and I have a sore throat like none other I have ever experienced. Peter is taking another day off of work, because I just don't have the energy to do much. I think Peter is coming down with something too. The irony is Mattie is doing fine. Thankfully! His white blood cell count is high and the thought is he hasn't reached his nadir yet (the point where his white blood cell count zeros out). Mattie will be meeting with Kathie tomorrow for his occupational therapy appointment, and will most likely meet up with Dan, his in home physical therapist this week as well.