Wednesday, September 10, 2008

Wednesday, September 10, 2008


Mattie is very excited to be the proud "parent" of a LARGE green sea turtle named Roxana. Thank you Kim (RCC Director) for this great idea! Roxana is satellite tagged and we started tracking her on the computer today. We received her adoption papers in the mail yesterday. Roxana is an adult female green sea turtle encountered nesting on the beach in Tortuguero, Costa Rica in June, 2000 and she is part of the Tour de Turtles marathon. Roxana was named by the Caribbean Conservation Corporation. She measures 101.1 cm in curved carapace (shell) length and is 350 pounds. If you want to see her journey, click on the this link: http://www.tourdeturtles.org/roxana-map.html We are thoroughly enjoying the new addition to our family!

Since Mattie's diagnosis, this was the first day that seemed somewhat normal. Being away from a hospital for an extended period of time, I guess can do that to a person. Mattie now has a new dressing change regimen for his central line. The previous one gave him intense dermatitis. So you may remember from previous blogs that tuesdays were typically shower and dressing changing days, however, the new schedule requires Mattie to have dressing changes on mondays, wednesdays, and fridays. So today was a changing day. Mattie is frightened to take a bath or a shower (perhaps he doesn't like the water beading down on his body, or he is afraid to get Sparky wet, I am not sure), but at least he can be talked into a sponge bath. Mattie did a great job with the dressing change, and even helped take off the old dressing himself. He is a great assistant. But the idea of flushing his central line daily and changing dressings almost every other day seems to be a constant reminder that things are not normal by any sense of the imagination. The hospital staff keeps telling me that Peter and I will come to develop and accept the "new normal" in our lives. Not only do I detest this phrase, but I find it condenscending. There is nothing normal about this, and I think as a parent you learn to adjust because you have no other option. But to consider this adjustment a "new normal" just rubs me the wrong way.

This afternoon, Mattie had a visit from Alex and his mom, Julie. Thank you for the vanilla shake and wonderful apple bread. We enjoyed playing Slamwich, a card game Alex introduced us to today. The kids did a lot of fun building together and chatting, while Julie gave me the opportunity to go upstairs and rest. Sometimes you do not realize just how tired you are until you stop moving. Thank you Julie for this precious gift.

Mattie received a lovely bouquet of fruit today, an edible creation! It was simply beautiful and delicious. I immediately noticed that the fruit was sitting in a pottery bowl, painted like a tennis ball. The tennis ball has great significance for us, since I credit tennis camp for alerting us to Mattie's bone pain. Thank you Team Mattie, for such a lovely and meaningful treat!

We received a phone call and e-mail today from Joan Holden, Head of School for SSSAS. Joan has always been there for us, providing us with encouragement, support and offering to do whatever she and SSSAS can do to help Mattie through the greatest challenge of his life. I believe that a school is reflective of its leadership, and given the groundswell of support from the SSSAS community, I find it of no surprise that its leader, Joan, is right there on the front lines, extending her support. Joan told us that a special prayer was said for Mattie this week in chapel. With that kind of channeling and prayer, Mattie and his parents could not ask for anything more.



I received a lovely e-mail from Bob Weiman today as well. Bob is posting our fundraising flyer around the SSSAS campus and he is also working with Tricia Lyon (the upper school religion teacher and service coordinator) to pull students together to volunteer at the carwash. In addition the upper school basketball varsity coach expressed interest in volunteering to help raise funds. Thank you Bob for advocating for Mattie!



I continue to receive e-mails from friends and family all over the United States telling me the prayer groups you have added Mattie to. We so appreciate this, and I feel that God is answering our prayers by bringing all of us into our lives. We want to thank Dr. Janet Heddesheimer (GW's associate dean in the Graduate School of Education) for adding Mattie to the prayer group at St. Anselms Abbey School.

On the electronic front, thank you Jacky, Charlotte, Charles, Helen, and Mercedes (it is nice to know my GW students are tracking Mattie) for your wonderful e-mails to Mattie, and Karen, Kim, Susan, and Lorraine for your great e-cards. These e-mails and cards brighten up all of our days!
I leave you tonight with a picture Mattie took tonight of JJ, our resident Jack Russell Terrier and then two quotes. JJ makes periodic visits thoroughout the day to check on Mattie. You can see in this picture how JJ is entranced by Mattie's presence.

Lastly, I bumped into my neighbor, Malcolm, today. He said to me that he admires Peter and I because we "live from the inside out, rather than the outside in." Meaning that he admires our priorities and how we have deep convictions that guide us in how we lead our lives and how we relate to others. Thank you Malcolm, no one ever told me that before, and it made a real impression on me. Lastly, Mattie's sea turtle Roxana, has a quote on the bottom of her adoption certificate. It says, "It's a marathon, not a sprint." So appropriate in our battle for Mattie's life, don't you think?