Wednesday, September 3, 2008

Wednesday, September 3, 2008

Mattie received this wonderful note today from Katarina Briedova, the Chapter Relations Manager at The American Mental Health Counselors Association. We wanted to share it with you!

M: is for Maginificent, loving one

A: is for Active, so full of fun

T: is for Terrific, a caring heart
T: is for Trusting, intelligent and smart

H: is for Honest, cheerful and smiley

E: is for Excellence, thought of highly

W: is for Worthy, a pleasure to know

Like the night before, Mattie woke up this morning at 4am. This time instead of screaming for help, he came into our room and tapped on my arm. Needless to say, none of us got a good night sleep. Peter and I are trying to figure out what is causing Mattie to wake up at 4am, is it nightmares, is he scared, or is he used to being with us in one hospital room? Who knows, but not being able to sleep even at home is wearing.

Today was Peter's first day back at work after being off for over a month. I knew Peter had to go back, but I felt a little uncertain how the day would play out without him around. Mattie was a bundle of energy today to say the least. We literally played every game possible, built lots of lego structures, read some books, and even played with JJ. As the afternoon rolled around, I was wiped out, and Mattie was ready for the next round. Fortunately Margaret (Mattie's first preschool teacher from RCC and a good friend) came over and added new energy to the equation. Margaret brought Mattie some wonderful baked things (a rolled pumpkin bread stuffed with a cream cheese filling and banana muffins!) that she made as well as two bags full of sea shells she found on her summer vacation. Margaret brought a child friendly shell book for Mattie, so that he could try to classify the shells in the bags. Mattie had a good time with Margaret doing all sorts of things: looking at shells and beach glass Margaret found, playing trains, visiting with JJ, as well as doing some Highlights hidden picture puzzles. Somewhere in the midst of all this playing, I went upstairs to rest. Thanks Margaret for this opportunity and for sharing your glorious roses with me!

Thanks to the generosity of all of you, Mattie continues to get gifts. Today Mattie opened up a wonderful dinosaur encyclopedia sent to him by Vicki's association, The American Mental Health Counselors Association (AMHCA). Thank you AMHCA for thinking of us and for all your wonderful messages. Thank you Mrs. Eaton (from SSSAS) for the wonderful card and special hotwheels stickers. When Peter came home from work today, he was carrying more packages with him. His colleagues from the Peru office of Voxiva, sent Mattie lots of wonderful gifts such as a spiderman kite, a wood model kit of dinosaurs, a Peru T-shirt, amazing stickers, a beautiful elephant carved puzzle, and glow in the dark stars and planets. Thank you Nathy, Sessy and Yina, Gustavo and Leni! Also, thank you Hygela for the nuts and the dancing and singing yellow bird as Mattie got a HUGE giggle from it! It is amazing how Mattie's story is touching people all over our world. Also, many thanks to Rana for a delicious meal tonight. The pasta was great and Pete loved the Cesar salad!

At around dinner time, we had a knock on our door. It was Frances Weiner, our neighbor. The irony about this, as Frances admits, is that we never really spoke much and got to know each other until this tragedy hit our complex. Frances gave Mattie a very special stuffed animal that was designed for him by Phebe Phillips. The animal is a cowboy puppy, and is almost as tall as Mattie, as you can see in the picture. Phebe signed the cowboy (AKA Dandy Dog Dakota), and Frances and Ben personalized it by saying: "To the bravest cowboy we know!" You can see the personalized message below, it is painted on Dandy Dog Dakota's foot. This cowboy, we feel is symbolic of Mattie's personality and also the kind of spunk and ruggedness he will need to fight this disease.

On the electronic front, thank you Kim for your wonderful e-card today. It helps start the day off on a good note. Thank you Lana, Susannah, Grammie, and Abigail for your e-mails. Abigail, we loved seeing you ride your two wheeler.
We also received a special e-mail today from Caroline Eaton, a fourth grade teacher at SSSAS. I had the opportunity last year to hear Caroline address the children at chapel. She told them about her unexpected summer plans of having to have a major surgery and the process it took her to recover. Her story was very moving and also I felt took a lot of courage to stand up there in front of the children and express her reactions and ways she coped with her surgery. Caroline has been following Mattie's story and read on his blog yesterday that he was composing away at the piano and that I was looking for a teacher, who could stimulate his mind, and channel his energies toward music, but in a low-key manner. Caroline has offered to teach Mattie the piano this year, and I feel she really understands the fight Mattie has before him. She has offered to teach Mattie for free. Not that we would allow this to happen, but it speaks to the kind of staff and people at SSSAS.

Peter and I are dealing with so many losses in our lives right now. One of which is a professional sense of loss. Though in the grand scheme of things, this shouldn't even be on my radar scope, but to some extent it is. I had high hopes, goals, and dreams for this year, as I was elected to run a national mental health counselors association. Though Mattie is my number one priority, I can't help but reflect on this loss in my life. I do not subscribe to a 'woe is me' philosophy in life, but none the less, I am saddened by what life has thrown upon us, and how I feel a lack of control over the direction and future of our lives.

This evening, Mattie and I were in the car headed to pick Peter up at work. As we were crossing through the GW Foggybottom campus, Mattie observed all the students walking around. It was at that point that it hit him, he isn't going to school. He told me that he did not want to go to the hospital tomorrow, but instead wanted to go back to school. He worried that he would not be able to attend first grade, and then expressed concern that SSSAS wouldn't have room for him if he did not attend this year (that caught me by surprise). I explained to him that everyone at SSSAS understood what he was going through and were behind him every step of the way. I told him that when he is ready to go back to school, there will definitely be a place for him. He dropped the subject, but I have a feeling it will resurface again. None the less, I am happy he is beginning to process this, because in my mind a child not being able to attend school, is equivalent almost to a child not being able to play. It just doesn't seem fair.

I would like to end today's posting with an email blast that Bob Weiman sent out today to all the families of the lower school at SSSAS. What can you say about a school that so deeply cares about a six year old boy as well as the impact Mattie's illness may have on all the children at the school! All I can say is THANK YOU, SSSAS!! Words and actions provide great comfort to our family!

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Important Announcement

Dear Lower School Community,

While some of you may be aware of what Mattie Brown (a kindergartner during the 2007-2008 school year) and his family are facing, others may not be, so we wanted to share some information about Mattie's illness, what we can all do to help, and how to work with your own children through this difficult time. This summer Mattie was diagnosed with a rare form of bone cancer called Osteosarcoma. He is currently undergoing chemotherapy at the Lombardi Cancer Center at Georgetown. He stays in the hospital for several days at a time during treatment and then goes home for several days before beginning another round of chemotherapy. He will begin his third round tomorrow.

We know that this situation brings up many questions, and we wanted to anticipate them and answer them as best as possible. The first question that many of you will ask is "What can I do to help?"

First of all, please keep Mattie and his family in your thoughts and prayers. Our Lower School will pray for Mattie each week in chapel. Our new chaplain, the Rev. Rosemary Beales, has offered her support to Mattie's family, and she will of course serve as a spiritual guide to our entire community as well. You can reach Rev. Beales at (703) 212-2919 or rbeales@sssas.org.

If you would like to learn how Mattie is doing on a regular basis, you can read the blog that Mattie's parents, Vicki Sardi and Peter Brown, have established, http://www.mattiebear.blogspot.com/ (Please know that their thoughts and reflections are geared towards adults and not students.). The upper left-hand corner of the blog also includes information about how to join "Team Mattie," a growing group of people who have provided the family with everything from meals to video games to pajamas. Ann Henshaw, the mother of one of Mattie's classmates, is the coordinator of this effort, and many Saints families have been actively helping since they learned of Mattie's illness. When you sign up to receive emails, you will learn more about what the family needs as well as upcoming fundraisers.

As a school we want to make sure that Mattie feels connected to his friends and the school community. On a regular basis first grade classes will send notes, cards, and drawings to Mattie as well as digital pictures of school events and activities. We are working with his parents in regard to sending classwork that will help him to feel "in the loop" with classmates but not so much that he will feel overwhelmed. We will also have some optional after school opportunities for families to offer their support in different, creative ways. Joan Holden and I will be in touch with Mattie's family about a fundraiser walk that is being organized by Mattie's mom's George Washington University students and will take place on our campus later in the year. You can contact me via phone or email if you have additional thoughts or ideas about how to support Mattie and his family.

We know, too, that many will also wonder how Mattie's illness may impact other students at school. Ms. Susan DeLaurentis, our counselor, is working closely with our first grade teachers to monitor how students are coping with Mattie's condition and to advise them on how to answer difficult questions that may arise. Ms. DeLaurentis offers this guidance if your child comes home with questions about Mattie's health:

1) The most important thing to do is to listen and pay attention to your child's concerns.
2) Do your best to respond to your child's questions. Let their questions be your guide as to how much information to provide.
3) Do not offer more information than children can handle. Children need brief, simple information that should be balanced with reassurances.
4) It is important to convey the facts - appropriate to their age- without too much emotion.
5) Avoid information overload, or providing information about which your child has not inquired.

6) It's ok to say, "I don't know."

Children express their feelings and reactions in different ways. It is important not to inadvertently impose our own adult fears and reactions on our children. If you have specific questions or concerns about such responses or the emotional well being of your child, please contact Ms. DeLaurentis directly at (703) 212-2780 or email her at sdelaurentis@sssas.org.

The outpouring of support for this wonderful family has been uplifting. We hope that this letter has been helpful in providing you with information about the situation, ideas about how you can help, and guidance on working with your children during this very difficult time. Please do not hesitate to contact Rev. Beales, Ms. DeLaurentis, or me with questions, concerns, or ideas.

Sincerely,
Robert D. Weiman
LS Directorbweiman@sssas.org St. Stephen's & St. Agnes Lower School

400 Fontaine Street Alexandria, VA 22302