Saturday, October 18, 2008

Saturday, October 18, 2008

Mattie literally popped up this morning, but when he discovered that Peter and I weren't in the room, he landed up crying. Since Mattie has developed cancer, I have noticed he doesn't like to be left alone. While at home, he wants Peter or I by his side all the time, so much so, that he can't even sleep in his own room anymore. So when I heard him crying, I went back into our bedroom, and sat with him for a while, to review our day ahead. He listened and then reported he was hungry and wanted waffles. So we went downstairs together and he helped me make homemade waffles. He literally ate almost two big waffles. Then he got dressed and was awaiting his first visit from Ms. Caroline Eaton. Ms. Eaton is a fourth grade teacher at SSSAS. I remember last fall having the opportunity to listen to Caroline during SSSAS' lower school chapel service. Caroline told the students of her battle with illness, the unexpected surgery she had to have over the summer, and the important life lessons she has learned from her struggles. I found Caroline's talk so meaningful, honest, sensitive, and empowering. I can only imagine her skills within the classroom. When Caroline contacted me after hearing about Mattie's illness, I jumped at the chance to connect Caroline with Mattie. I feel that Caroline also understands what Mattie is up against, and I loved hearing what role music has played in her life, and I welcomed her offer to help bring music, specifically the piano, into Mattie's life. When Caroline arrived, Mattie was in a shy and timid mood, which changed into a bit of an agitated mood. Caroline handled all of this beautifully and worked very hard at getting to know Mattie. They started playing on Jerry's keyboard, and eventually migrated to our spinet piano. Caroline gave Mattie Alfred's Basic Piano book, which appears to be a wonderful method that Mattie caught onto. Both Peter and I got involved with the process, and we even sang a couple of little songs as Mattie played the piano. Playing an instrument is such a gift, and it is my hope that Mattie will embrace this opportunity. Thank you Caroline for your generosity of time, skills, and spirit.

At around 1pm, Ms. Debbie Pollak came for a visit. Debbie is Mattie's art teacher at SSSAS. I alway tell Debbie that she inspired something inside of Mattie last year, because since he entered her classroom, he has been very focused on art and creating (which in my opinion, is a wonderful passion to follow!). Debbie is a major Mattie supporter, she writes to both of us on a regular basis, and what also impresses me about Debbie is she has a heart of gold. Besides being a dedicated teacher and artist, she also is a caregiver for her mother, and many others in her life. She is very selfless with her time and energy. You have to admire someone who can give out this much love and not expect much in return. Rather a unique quality in the world we live in. Debbie came over today, and transformed our home into a Native American experience. She brought several CDs of Native American music, several books, including two wonderful stories retold by Tomie dePaola: "Legend of the Indian Paintbrush" and "The Legend of the Bluebonnet," which she read to Mattie. Mattie was sitting very still and listening to each of the stories. It was very clear that Mattie is very fond of Debbie and she has a way of capturing his attention. Debbie gave Peter and I the opportunity to go out to lunch (thanks Mommy and Daddy for a nice lunch), while she did some fantastic art projects with him. Mattie learned about Kachinas. These are actually stylized religious icons, meticulously carved from cottonwood root and painted to represent figures from Hopi mythology. For generations, these figures have been used to teach children about their religion and culture. Debbie showed Mattie two kachinas she has, as well as some other wonderful Native American pieces she has collected. While we were gone this afternoon, Mattie painted a picture of Tawa. Tawa is a kachina and the god of the sun, justice, and victory. In addition, he made a dancing figure, which he entitled, "Chief dance a lot," and a beautiful prayer feather. See the pictures below of these fabulous creations. I realize I am biased but they are beautiful.

Lt: Debbie and Mattie discussing the meainging of Tawa!
Rt: Mattie's painting of Tawa

Lt: Chief Dance A lot!

Rt: A prayer feather, used in a prayer ceremony, and passed around the group as a prayer is said.

Thank you Debbie for coming over today, for giving him lunch, reading him stories, and helping to create some wonderful pieces. Your visit was greatly appreciated!

Mattie had a visit today from JJ, who brought over a box of Dunkin Donuts. JJ knows the way to Mattie's heart. Thank you JJ. Later in the afternoon, Mattie had a visit from his buddy, Zachary. Zachary brought Mattie some cute halloween items, which we are all enjoying. Thank you Katie and Russ (Zachary's parents) for a lovely dinner. You spoiled us tonight with some wonderful foods. Mattie devoured the spaghetti, which is still the food of choice this week! It was wonderful to catch up, and though Mattie and Zachary do not see each other as often as they used to, it is amazing to see that their interests are still the same. They are both very interested in legos and they built a wonderful city together tonight. See below.

The humor for the evening was watching Peter attempting to locate the Red Sox game on TV. Apparently TBS had some technical difficulties, so the game couldn't be aired for 30 minutes. I thought Peter was going to explode. He started calling his brother in Boston and even a couple of his friends to see if they were able to see the game. Finally he called Direct TV. By the time Peter was finished with Direct TV, he got $15 taken off our bill. It was a sight to see, and at one point Mattie and I were looking at each other and laughing over how insane this is, to be yelling over a Red Sox game. Also, Pete wanted me to remind everyone that the Red Sox DID WIN game six against the Rays, which forces a Game 7, from which the winners will go on the play the Philadelphia Phillies in the World Series, and the losers will start their five month vacations. Go Sox!!

Mattie and I had an opportunity to take a walk today to collect leaves. Mattie loves to do this, and he is creating his own harvest table decoration on our patio. You can see this picture below. However, what amazed me is while walking and holding hands, Mattie stopped and said to me, "look at that beautiful flower." In the midst of a bunch of ivy, Mattie was correct, a beautiful purple flower was blooming. I mention this because I did not even notice the flower, I would have walked right passed it. But Mattie not only spotted it, but forced me to stop and look at it. I tell you this story because Mattie this weekend is enjoying the moment, so much so, that he is observing everything around him, like the flower. Whereas, my head is heavy, I am preoccupied about monday, and can't help but feeling as of monday nothing will be the same. Mattie did ask me a question today, he wanted to know if he would have died if he did not get the chemo. So we talked about that, and I told him most likely he would have gotten much sicker and could have died, but fortunately he is taking the medicine and now we will be removing all bone bug homes starting on monday. He seemed happy with that response, but it is the beauty of talking to a child about a serious issue. He comes in and out of the issue, and doesn't focus upon it 24/7 like an adult. Thankfully!

I want to share an e-mail I received today from Nancy. Nancy is a mom of an osteosarcoma survivor (who was a patient of Bob Henshaw). Nancy wrote, "I so enjoy reading your blog (I actually go onto the website before I go to bed, each night!). I have to share with you - when you mentioned the part about Mattie wondering why all the attention.........when Brian got diagnosed, EVERYONE was willing to help and initially I turned them all down. Obviously, extremely grateful for their generous offer. I guess I was too proud to accept help! Afterall, I am a mother of five....I can do ANYTHING! But the more I prayed on this issue - I found myself saying yes more to the offers. People (whether or not we knew them) felt the need to help....in anyway possible...meals, prayers, driving other children to and from activities, Costco runs, etc., it helped THEM deal with Brian's situation. Even to this day, I have community members (most I know, some I have never met) come up to me thanking ME for allowing them to assist our family, in need. This reminds us that we are a community (a FAMILY) and when one person is down.....we all need to rally together!" I think Nancy captures what amazes me. The incredible response from our community, I can't get over how all of you are rallying around our family, and we are in awe and are very grateful. My friend Susan said the same thing that Nancy is writing about. That we are giving people a special gift, the opportunity to help and get involved. I never looked at it this way before, mostly because I am too absorbed about the burden it places on others.

On the electronic front, we want to thank Grammie for her e-mail of wonderful animal pictures and Kim, Brian Boru, Susan S., and Karen for their wonderful e-cards! As I sign off tonight, I want to say thank you for all your constant support. I have no insecurities about telling you that I am very scared regarding monday. We plan on making Mattie's sunday fun, before we check into the hospital sunday evening. As always keep us in your thoughts and prayers as Mattie heads into a very challenging week!