Wednesday, October 8, 2008

Wednesday, October 8, 2008

Thank you Camille for tonight's quote of the day!

"Courage is not the towering oak that sees storms come and go; it is the fragile blossom that opens in the snow." Alice M. Swaim

Today's quote speaks to Mattie's strength and courage. Because despite his terrible day on tuesday, Mattie was able to "blossom" and have a wonderful day today. Mattie woke up early and was motivated to get his bathrobe and shoes on, because guess who he wanted to see? You probably guessed, his pals Linda, Whitney, and Lesley. Mattie and I walked passed the playroom and childlife office but the ladies were not in yet (since it was EARLY in the morning). Mattie and I then walked to the family room where we were productive and did laundry together. At the laundry machine we met up with Brandon's (a teen with cancer) mom. We chatted for a bit and then continued our walk. Not long after, Whitney and Lesley came to find Mattie. They grabbed a hold of his IV pole, and walked him to the playroom. I stayed behind in Mattie's room but joined them about 45 minutes later. When I got to the playroom, I found Mattie playing with Lesley and Brandon. They were working very well together creating a wonderful sealife scene. Mattie molded sea creatures out of foam and model magic (literally Mattie molded a whale, sting ray, and fish). To me the playroom is a blessing and a much needed addition to the floor. As the morning unfolded, Mattie built upon his creation and created an island, bridge, and an ocean. Below you will see him hard at work.

While we were in the playroom, we had a visitor. Liza M., a SSSAS mom, who I have gotten to know through Mattie's illness. Liza and I never met until Mattie's carwash fundraiser this fall. Liza came bearing a lot of wonderful gifts. Liza's son, Tom, designs wonderful t-shirts, and he created a very soft and attractive shirt with Mattie's initials on the front. This shirt is so unique and special, we thank Tom for this artistic creation. Mattie received a wonderful plastic jack-o-lantern carrying case, filled with clay, crayons (which belonged to Tom), coloring books, stickers, and a wonderful pumpkin lantern and foam haunted house. This was the ultimate crafts gift! We are also enjoying "Hannah's" pound cake that you baked for us. Hannah is Liza's sister's mother-in-law. The cake is delicious and just makes you feel happy. I can see why Hannah gives this pound cake as a gift during special and difficult times. Thank you Liza for your lovely visit and the chance to get to know you and your family.

As time passed, Mattie was ready to go back to the room. We headed back and met up with a representative of the Candlelighters Childhood Cancer Foundation. She brought with her a lot of written resources, many of which I had already, along with some car magnetic ribbons which stated, "Conquer Kids Cancer."During our conversation, this representative mentioned my two least favorite words, she said you have to learn the "new normal." I am SO sick of this statement, that now I am not holding back and just tell people that I don't care for this statement and why.

This afternoon, I had a visit from Alison. She brought me lunch and gave me the opportunity to get out of the hospital room. She suggested I go outside. Isn't it terrible that this thought never even crossed my mind? As I was heading outside the building, I realized I hadn't been in fresh air since monday morning. It was a pleasure to sit outside. A few minutes later, Alison joined me, because Linda was kind enough to entertain Mattie so Alison and I could have lunch together. Alison also brought a happy meal for Mattie. Mattie's appetite is stellar today. He basically ate the left over spaghetti from the night before which he loved (thanks Joy!) and also continued to have a second lunch, his happy meal. It was wonderful to see, and Mattie's nutritionist and I were celebrating today! Thanks Alison for a great and tasty lunch and as always lovely conversation.

When I got back from lunch, Mattie and Linda were playing all sorts of things together. Mattie wanted to go back to the playroom with me, but before we headed out, Linda and I had to snap a picture of Mattie in his HUGE GW halloween basket. He was too adorable. Linda and I also carried Mattie for a second or two in the huge basket. He thought it was a riot.

In the picture, Mattie was barking like a dog, and actually saying "woof." Which is why you will see his tongue hanging out in the picture. But I thought you would appreciate this picture, because it will show you the scale of this huge halloween basket.

Whitney's (childlife intern) sister and mother stopped by the hospital today to see where Whitney is working. Mattie had the pleasure of meeting Whitney's family. Mattie is very fond of Whitney and Lesley, and I took a picture of Whitney today with Mattie, so you could get to know another wonderful person in the Mattie support team at the hospital.

As the afternoon, continued, I received a wonderful sign to post outside our room door that was created by Jenny. I was telling Jenny yesterday that people seem to just come in and out of my room all day despite the signs I write on the door asking for no visitors during a particular time. So Jenny, created a sign and I look forward to testing it out. Thanks Jenny for listening and for designing the sign. I find today that my sore throat is back and I feel more run down.

Back in the playroom this afternoon, Mattie and I played a rousing game of 3-D Scooby Doo, a board game given to us by Mattie's music teacher, Mr. G. Everyone in the playroom is intrigued by this game, because of the characters and 3-D nature. Denise, our social worker, met us in the playroom and she continues to be amazed by Mattie's creativity. Seems to me that Denise and others feel that Mattie is unique in many ways because he can entertain himself with these craft and creative projects. So we were enjoying watching the artist at work this afternoon.

At 4:30pm, Mattie had a special visitor, Ms. Mary Dressendorfer. Mary is Mattie's technology teacher at SSSAS, and is committed to working with Mattie each wednesday whether he is in the hospital or at home. Mary engaged Mattie for over an hour. Mattie learned ways to take videos on the computer, and to also type in sentences and have them read back to us by a computerized voice. I too was in awe of what they were accomplishing, and I think I could use several lessons from Mary to get up to speed with the 21st century. Mary is a delightful woman, who is energetic, compassionate, and has a smile that is so soothing and warm. It is no wonder Mattie loves his time with her. Mary also brought Mattie two special gifts. A game ball from the National's game played on September 2. The ball even has a dent in it from where a baseball bat clearly hit it! What a wonderful piece of memorabilia. The second gift was a CD of Mattie's spanish class singing during his kindergarten year. Something we will cherish.

On the fundraising front we want to acknowlege Vonnique Van Way (SSSAS' high school french teacher and mom of one of Mattie's kindergarten classmates). Vonnique's French Club at the school voted to give the proceeds from their first crepe sale to the Brown fund. Thank you. We also want to acknowlege a major donation from Michael Miele and Anne Esbenshade! Though we do not know you directly, we appreciate the incredible support you are giving Mattie.

Two e-mails I would like to share with you tonight. One comes from my friend Christine. Christine invited us over to her house last weekend for a BBQ. Today she wrote to me, "During your visit I was struck by the your calm demeanor with Mattie. What I mean is that you never hovered over Mattie or stopped him from running or crawling around while the kids were playing. I imagine that this hands-off approach must have been tough given Sparky and other concerns over active physical play. Whether this was your intent or not, you have great instincts because it looked to me like Mattie was very relaxed and could just be a kid, getting lost in imagination with no other worries." What a wonderful message to receive. Because in all reality it would be very easy to want to hover over Mattie, but a part of me knows that on some level he is VERY responsible. He takes care of his body and protects Sparky. I have confidence in him to do the right thing, and he has doctors and nurses poking and proding him all the time in the hospital, so during his free time, I want him to feel free and in control. However, I did not realize I was consciously doing this until Christine sent me such a nice e-mail.

The second e-mail was a funny story sent to us by Carolyn, about her daughter Ellie. You may recall Ellie is Mattie's RCC friend who took it upon herself to collect funds for Mattie by selling her art creations. Carolyn wrote, "Ellie participated in a cheer camp at Bishop Ireton this past weekend and then they “performed” with the cheerleaders at half-time. Well, Bishop Ireton happened to play Saint Stephen’s this past weekend. Needless to say, after all that I have heard about the kindness and caring you have received from the SSSAS community, I found myself cheering for the “opposing” team. When I told some of the other parents why I was cheering for SSSAS – they quickly joined in with me (to the great dismay of many of the BI families – oops). After the camp/game – Ellie also told me that she was “cheering” – but not for any particular team because she didn’t want to cheer “against” Mattie’s school." If this isn't the cutiest story, I don't know what is.

We had a wonderful dinner tonight thanks to Margaret. Thank you for fulfilling Mattie's pasta demands. Pasta is the food of choice this week. Not a bad choice! Thank you for all the goodies and tea bags! Thanks Mommy and Daddy for the NEW scooby video. A major hit tonight!

On the electronic front, thank you Susan, Lorraine, Kim, and Karen for the wonderful e-cards, and Barbsie, Ms. Pollak, Allen, and Camille for the e-mails. Thank you Audrey, we appreciate your mom putting Mattie every week on the prayer list at the United Presbyterian Church in Amsterdam, NY. I want to end tonight with a lovely message that we received from our RCC friend, Beth. Thank you Beth, because I have to imagine God is with us and we are not walking this scary path alone. Keep Mattie in your thoughts on thursday and friday. He has one two hour MRI on thursday and another two hour MRI on friday.

Beth wrote, "I'm not sure why, but Mattie and you and Pete have been very much in my thoughts today. Seemingly, normal work and life tasks today seem to be bringing me back to you. As others do, I read the blog daily and am simply astounded at your strength and faith. You are truly an amazing family. I know you get tons of emails and I try not to bog down your email with more, but I just felt compelled today to reach out. I walked into my room this morning and this picture that has been on my wall for 15 years now seemed to almost jump from the wall today and so I sat down and read the words below with you in mind."


One night a man had a dream.
He dreamed he was walking along the beach with the Lord.
Scenes from his life flashed across the sky
and he noticed two sets of footprints in the sand,
one belonging to him and the other to the Lord
When the last scene had flashed before him,
he recalled that at the lowest and saddest times of his life
there was only one set of footprints.
Dismayed, he asked, "Lord, you said that once I decided to follow you,
you'd walk with me all the way.
I don't understand why, when I needed you most,
you would leave me."
The Lord replied, "My precious child.
I love you and I would never leave you.
During your times of trial and suffering
when you saw only one set of footprints...
That was when I carried you."

"Again, I'm not sure why this spoke to me so loudly today, but I thought that by sharing with you, you may get some comfort in being reminded that you are not alone. It is through GOD that you were directed to RCC and to SSSAS and through that path that Team Mattie was formed, so for all that we do there is a reason. Today, I just wish you peace and comfort in one another and knowing that you can find strength from one another and from reaching out to others when needed."