Quote of the day: "If you see a whole thing - it seems that it's always beautiful. Planets, lives.... But close up a world's all dirt and rocks. And day to day, life's a hard job, you get tired, you lose the pattern." ~ Ursula K. LeGuin
Charlie wrote, "This is the quote that struck me today after reading the blog. Why? Because while Mattie's journey from illness back to health is overall a beautiful one, to see the return of his smile and enjoyment in life, day to day it is very messy and very difficult. It is hard to keep the focus on the end, on the completion of the project that we know will be so beautiful when you have to deal with the day to day difficulties compounded by the rules of an established bureaucracy. I think of an artist's studio, paints and drop cloths everywhere, the pallet covered in splotches of color, the canvas partially completed with a hint of what is to be. Then turn the calendar a few months and the scene is totally different, the room is cleared and on the easel resides a masterpiece with few clues to what efforts it took to put it together."
Mattie had a rough night of sleep on friday. He was up a lot with nightmares. At one point in the night he woke up and he was disoriented and he did not know where he was. To make a long story short, I had trouble waking up this morning. I stayed in Mattie's room with him last night, and let Peter get another night of rest. I think working full time and working around the clock at the hospital is just too much for one person to handle. Mattie had two visitors coming this morning, and I insisted he get cleaned up and dressed today. He agreed and cooperated! I noticed this morning that Mattie's left arm has rotated in the L position for the third time. I am concerned about this because basically Mattie is unable to effectively use his left arm. So this morning I sent Dr. Bob an e-mail because I continue to grow concerned by Mattie's arm, and I am looking to Bob for his good counsel. Bob responded back right away with some suggestions and he is giving Mattie's situation further thought because the ultimate way of fixing the arm (surgery) can not be accomplished right now.
At 11am, Caroline Eaton, Mattie's piano teacher, came over to visit with Mattie. Mattie was in good spirits and chatted with Caroline and they had fun looking at the birds who were eating at our bird feeder. Our bird feeder is a study of nature in operation. We have pigeons, sparrows, red headed finches, and others who come and visit. There is a definite pecking order as to who gets to eat first, and who can be on the feeder at one time. Mattie finds this fascinating to watch and to provide commentary on his observations. Mattie and Caroline had fun talking about the Lion King, and they even played a song to two from the Lion King music book that Mattie's Grandma sent him. One of Mattie's favorite songs from the Lion King is, "I just can't wait to be king." Caroline also noticed Mattie's attitude change and slowly we are seeing glimpses of the old Mattie resurfacing. Thanks Caroline for a nice morning. While Caroline was working with Mattie, I had the chance to actually make a phone call and connect with my mom. Talking on the phone these days is next to impossible.
This afternoon, Mattie was also visited by Julie. Julie was Mattie's babysitter for two years while she was an undergraduate at the George Washington University. Julie and Mattie had a special rapport, and we were saddened when Julie relocated to NYC. Julie spent the afternoon with Mattie, while Peter and I were able to get out and have a peaceful lunch together. It is in quiet moments like this that Peter and I catch up on things and actually get a chance to communicate with each other. Today's lunch we talked about a lot of things and also did mock up drawings of the osteosarcoma stamp we would like to create, as well as the t-shirt design for Mattie's walk-a-thon. The irony is we were so certain the t-shirt was going to look one way, focusing upon the colors of Dunkin Donuts (one of Mattie's favorite treats), but after brainstorming the t-shirt this afternoon, we changed the design altogether. Team Mattie is going to love us! But we felt it was important to capture the theme of HOPE (our motto right from the start, thanks to Alison for introducing this powerful word to me through her necklace). To us, HOPE is especially symbolized through Mattie's "Mr. Sun" painting. So we are determined to incorporate Mattie's Sun into the shirt design.
Julie and Mattie had a busy afternoon together playing with legos and building puzzles. Mattie reassembled his world puzzle for Julie and you can see he is on top of the world today!
It was wonderful to see Mattie interacting with Julie. They seemed to pick up with their friendship just where they left off, and they haven't seen each other for almost a year. Before Julie left today, I took a picture of this two some. Thank you Julie for this break and for all the goodies you brought Mattie.
Mattie, Peter, and I watched several Wallace and Gromit videos today. Mattie enjoyed them, as we suspected he would. The claymation done by the Aardman Animations studios is wonderful, and the faces of the characters have a way of grabbing the attention of young and old. In between watching the videos, I was dealing with laundry. Once the laundry was done, we started eating dinner. The Harding family provided us with a lovely dinner. Mattie loved the pizza and the shrimp! However, despite eating dinner, Mattie was upset. I think he was really upset by the fact that Peter and I went out to lunch today, and he did not get to join us. In addition to that, I think he has been couped up for two days at home, and he wanted to get out. So he insisted that he wanted to go out to dinner tonight. Mind you, I had changed for the day, and was in my comfy clothes and was ready to wind down. But I could tell Mattie was getting stir crazy at home. So Peter and I got dressed up again, and we bundled Mattie up and wheeled him to our neighborhood chinese food restaurant, The Magic Gourd. The Magic Gourd is a Foggybottom landmark, and we have known the owner for years. When we entered the restaurant, Frank, the owner was thrilled to see Mattie. He and his family couldn't do enough for us. Mattie had an order of coconut shrimp, and because he already ate dinner, he really couldn't eat more than one shrimp, but I think what he really was craving was leaving the house, being around other people, and doing normal things like we used to do. Mattie was playing at the table and was very animated. I snapped a picture of his flower creation he made for me at the table. I thought the creation was sweet, and Mattie's face was darling. Peter then snapped a picture of Mattie and I together. It is funny, when I saw tonight's picture, not only did I notice how tired I look, but more importantly I saw that Mattie looks just like me. People comment about this all the time, but something about tonight's picture just spoke to me. Not only do we physically look alike, but Mattie and I are also a lot alike in personality
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Peter was laughing at Mattie and I tonight and he says he feels sorry for any girl Mattie dates, mostly because Mattie and I have a very close relationship. Though I laughed, in all reality I told him I couldn't think that far into the future. At the moment, I take all the hugs and kisses Mattie wants to dole out!It was a nice family night out, and I was so happy Mattie suggested it once we got our act in gear. We needed this good time together doing things we used to do. Before our outting was over, I snapped a picture of my two guys, to capture this special moment.
As I write this blog tonight, Peter and Mattie are watching the Lion King movie. I can't get over how similar the play is to the movie. Mattie is glued to the movie and is enjoying the music. I end tonight by telling you about a special letter I received in the mail today from the Caribbean Conservation Corporation (CCC), the organization that helps protect Roxana (Mattie's sea turtle). Rocio Johnson from CCC has been incredibly supportive of Mattie. She sent Mattie a Christmas gift, and even helped to write a newsletter article about Mattie for the CCC organization. However, Rocio also helped Mattie's story reach beyond her membership. She wrote a lovely article for the Brevard County Woman Newspaper (The #1 woman's eduational newspaper in Brevard County, FL.). Rocio sent me the newspaper today featuring the article. I have never met Rocio, but it is acts of kindness like this that I find so incredibly touching.
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