Thursday, June 10, 2010

Thursday, June 10, 2010

Tonight's picture was taken in March of 2008. We took Mattie on a Los Angeles Harbor cruise. In the backdrop was the Queen Mary. We explained the history of this impressive ship to Mattie, and since Mattie liked ships it seemed only fitting to capture this moment with Mattie and the grand lady (or the Grey Ghost).


Poem of the day: Precious Son by Joy Curnutt
God, I know you gave your precious Son
To give us life with You.
But I didn’t want my son to leave,
Cause he was precious too.
We all are precious in your eyes
And all to you return.
I know my son will not come back,
And I still have much to learn.
Our time on earth is for learning,
And when our lessons are through,
Our spirit chooses the time we leave,
And we come back to you.
My precious son is with you,
And there will be a day,
That I too will leave this earthly place,
And you will light my way.
I know your arms will be open,
And I will have a smile,
To see my God and precious son,
I will then become Your child

I went to bed not feeling well and therefore had a hard night of sleep. However, I woke up better today, and focused on a bunch of chores I had to accomplish. I had many packages on behalf of the Foundation to mail today. Because I had so many, I decided to process half at one post office, half at another, and hand deliver four packages myself. While I was at a post office in Alexandria, VA., I noticed a smiling face on line who said hello to me. The person on line was a third grade teacher at Mattie's school. Her name is Becky and I recently met her in person at Mattie's tree dedication ceremony on May 24. At the ceremony, Becky introduced herself to me and told me she is an avid blog reader. In fact, when I saw her this morning, she was well aware that Ann is out of town, and Peter is headed out of town tomorrow. When Becky told me she read our blog, I was deeply touched, but today's encounter was another memorable moment. Mind you I never met Becky before and Mattie never had her as his teacher, yet she is captured by Mattie's story and the impact his cancer has had on us and the community. I admire Becky's sensitivity, true concern, and empathy. All I can think of is if this is how Becky treats a family she doesn't know well, I can only imagine how blessed the students in her classes feel. In a way, I am saddened that Mattie never got to the third grade, because I have a feeling Mattie and I would have both appreciated Becky's enthusiasm, insights, and sensitivity.

After running chores, I eventually made my way to see Mary, Ann's mom. I asked Shayla, Mary's caregiver earlier in the day if Mary wanted some sort of tasty treat for the afternoon. Shayla and I both determined that Mary would like ice cream. When I arrived at her assisted living facility, one of the caregivers told me that Mary was lonely and was awaiting my arrival. Mary was thrilled to see the ice cream, and though she told me not to bring her anything, I could tell she enjoyed being thought of in this way. While I was chatting with Mary, my phone made a noise. It makes this noise when someone sends me a picture. So I grabbed the phone, and I could see Ann was sending me pictures of her children on the beach in San Diego. So I showed them to Mary, and this gave us a lot to talk about. We kept messaging Ann back and forth, and finally I think she decided it probably would be easier just to call us. So Mary and I talked to Ann today for about ten minutes and Mary listened carefully and took in all the details. Mary enjoys a good conversation, and this stimulation is very good for her.
I would like to share some more pictures from the Mattie Miracle Cancer Foundation Walk with you tonight. These photos celebrate our connections with the Georgetown University Hospital!

In this picture, Katherine and Katie (both fabulous HEM/ONC nurses) were setting up a photo display of Mattie. The photos depicted what at typical day looked like for a pediatric cancer patient at the Hospital.

 

Left: Katherine and several childlife volunteers set up art work that was on display at the Walk. This art work was created by several pediatric patients at the Hospital.

Left: Mattie's buddy, Campbell, with his parents checking out the art work.

Left: Robbie (one of Mattie's favorite childlife volunteers) was helping children at the model magic childlife table at the Walk.

Left: A close up of the activity at the model magic table.

Left: Pictured from left to right are Peter, Mary (head social worker at the Pediatric Lombardi Clinic), Dr. Aziza Shad (Director of the Pediatric Lombardi Clinic), and Vicki.

Left: Robbie (a fabulous Childlife volunteer) and Megan (the director of volunteer services at the Hospital) doing laps!

Left: From left to right, Virginia (Vicki's mom), Kelly (Tricia's daughter), Nicole (Tricia's daughter), Tricia (one of Mattie's amazing HEM/ONC nurses), Vicki, Kyle (Tricia's son), and Katherine (HEM/ONC nurse educator at the Hospital).

Left: This picture features four fabulous HEM/ONC nurses! Pictured from left to right are, CR, Vicki, Tricia, Katherine, Peter, and Jenny. 

Left: Mattie's Lombardi Clinic buddy, Maya! Maya won a raffle item and was THRILLED as you can see!

Left: A trio who probably doesn't need an introduction if you are an avid blog reader. Pictured from left to right are Lesley, Brandon, and Whitney. As many of you know Brandon was Mattie's closest buddy at the Hospital, and Whitney and Lesley were Childlife interns that were simply fantastic! They understood Mattie, and their warmth and energy were radiant and always appreciated.

Left: Pictured from left to right are CR, Jim (Brandon's dad), Toni (Brandon's mom), and Jenny.

Left: Pictured from left to right are Hannah (Jocelyn's sister), Jocelyn, and Brian (Jocelyn's husband). Jocelyn is an osteosarcoma survivor, and she was a wonderful role model for Mattie. She helped him in immeasurable ways, and we are so thrilled her family could be at the Walk.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you got up and did some productive things yesterday. It really can be hard and there are days in which getting up just seems to be a monumental task. I am glad you are planning to visit with Mary but that you also recognize your own limits and are reaching out to those who can support you. While the path can be navigated on one's own, it is a very difficult and often heartbreaking thing to do so having support is such a wonderful thing. All of us are here to help; just reach out and clasp a "hand" that is reaching out to you. As you walk the path over the next week, know that help is just a phone call, text or email away. I hold you gently in my thoughts."

Wednesday, June 9, 2010

Wednesday, June 9, 2010

Tonight's picture was taken in March of 2008. Mattie and I went on a trip to California to visit my parents. While there, we took Mattie to a hands on Noah's Ark exhibit at the Skirball Cultural Center. I included a link to the exhibit if you should want to see some of the fabulous and intricate details. It was well worth the trip!
http://www.travelinlocal.com/noahs-ark-exhibit-swings-at-the-skirball-cultural-center/
At the exhibit, they had an area where children could climb and explore. The irony is that Mattie was afraid of climb and hesitant to run around and even climb steps before he entered preschool. Each week, Mattie and I would work with his amazing occupational therapist, Kathie, to retrain Mattie and to help him overcome his fears of his physical space. Clearly, from this picture you see that early intervention was very successful. Mattie loved adventure, was always cautious, but as you can see he had a big smile on his face as he was running around.

Poem of the day: Counting by Charlie Brown


Another Tuesday has
Come and gone
How many more
Until I stop counting weeks
And start counting years?
Is that even possible?
I can't imagine it now.
From where I stand
Each new week remains
A hurdle to be conquered
Filled with the pain of remembering
How sad that now I have started
Counting months, the first count
Starts with nine, that number
That is supposed to be the start
Of a new life born, and not one lost
The cruelty of numbers is hard to fathom.


As always, just like everyday since Mattie died, Ann text messages me each morning. However, this morning I did not respond to her. I was tired, did not want to get up, and this mood progressed throughout the day. On those days, like today, when I don't respond to her in writing, she then proceeds to call me. She can always tell what kind of day I am having based on how many times she has to call me and leave a message until I finally decide to answer. For those of you who do not know Ann, she can be very persistent. When she finally spoke to me today she invited me out with her to go shopping and to lunch. However, I chose not to go. Instead, I finally got myself together and decided to spend the day at home so that I could make headway on some of the final Walk paperwork I wanted to do. So in that sense it was a productive day.

In the midst of wondering how on earth I would be spending the next week without Peter and Ann, I began to get e-mails and phone calls from friends. Slowly but surely, by the end of today, I practically have each day planned, so that I will be spending a portion of each day with a friend. When Ann goes out of town, I try to spend time with her mother, Mary. Mary's physical and cognitive health are declining rapidly, and when Ann goes out of town Mary's feelings are exacerbated. However, based on my own emotional state, I realize I do not have the stamina to spend the amount of time that I typically would with Mary without having the support of others in my life. So for me, planning out my week was necessary and a healthy thing. Otherwise, I could potentially spend it in isolation.

I uploaded some more Mattie Miracle Cancer Foundation Walk photos for you to look at. What I love about the next three pictures, is they illustrate that the Walk was truly an inclusive family event. Even our four legged friends were walking around the track and participating in the day! I love the fact that Jeff, our friend and photographer, captured these special guests.

 

The pictures on the left and the right to me are charming. They capture Liza, our co-coordinator of logistics with her daughter Katie, handing out beads to two little boys, Cameron and Jamie. Look at the enthusiasm and excitement on the children's faces as they earned a bead for the lap they just completed!

As the picture in the center illustrates, adults were intrigued by the beads too! Peter's colleagues, John and Bill, received their beads from Liza and Katie and were working on stringing them onto the backpack clips.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I know you hear the echo of Mattie in all the things his friends are doing now. Puzzles, preparing for camp and playing sports. It has to be very difficult and yet you handle it with grace and strength. I admire your determination to do so. I respect your decision to keep Mattie's things as the physical reality of them is still very important to have in your space. There may come a time when that is no longer true; it will be okay then to let some of them go. You will know when and you will know which are the important things you need to keep and which can be "kept" in pictures or videos instead. Until then, respect your own feelings in the matter. As you walk the path today I send you my strength to help you continue to connect with others even when the effort seems too much. I hold you gently in my thoughts."

Tuesday, June 9, 2010

Tuesday, June 9, 2010 - Mattie died 38 weeks ago today, or in other words 9 months ago!

In March of 2008, I took Mattie to California to visit my parents. While there we took Mattie to the Ronald Reagan Presidential Library in Simi Valley, California. Visiting presidential libraries are a very special treat, and I am happy that Mattie got to at least one in his lifetime. I snapped a picture of Mattie in front of a piece of the Berlin Wall that is memorialized at the Reagan Library. As many of you know in history, November 9, 2009 marked the 20th anniversary of the fall of the Berlin Wall and the advent of freedom and democracy in Eastern Europe as we know it today. Reagan was famous for saying, “General Secretary Gorbachev, if you seek peace, if you seek prosperity for the Soviet Union and Eastern Europe, if you seek liberalization: Come here to this gate! Mr. Gorbachev, open this gate! Mr. Gorbachev, tear down this wall!”

Somehow on the day that represents the 9th month of Mattie's passing, I felt that a picture of Mattie by the Berlin Wall was rather symbolic. Just as the tearing down of the wall represented a dismantling of power and steps toward freedom, by Mattie having cancer, battling cancer, and dying from cancer, he has torn down a huge wall within our community. The wall that we sometimes create in our minds, the wall that prevents and protects us from seeing, hearing, and understanding that thousands of children each year are diagnosed with cancer. A disease that affects the entire family. Mattie by this wall, represents in my mind, the catalyst for change.

Poem of the day: Reunited With You


Do not believe that I'm dead and gone
I want you to know that in spirit I live on
Never weep when you gaze at that one empty chair
Don't you know that quite often I come and sit there
I still know when you're ill
Or when you have a bad day
I am only a whisper or a heartbeat away
For I still walk where you walk
I still hold your hand
My footprints aren't there when you walk through the sand
But my voice can be heard in the sound of the sea
Or in a child's laughter when it's bounced on your knee
You can hear me when a cool breeze rustles through flowers
Or in the tree tops that bend with the first evening showers
I whisper to you in the still of the night
If you could but see me you would know I'm alright
So search with your eyes
You may glimpse me one day
As I stand there and watch little children at play
I'm the light in the window
I'm the snowflake that falls
I'm the shadow in the moonlight
I'm the nightbird that calls
My spirit lives on althought my earth time is done
I'm still part of the earth
I'm lit by the sun
So smile for me please
I don't want you to grieve
I'm well and I'm strong
I didn't really leave
When your time comes to go
The last thing you'll see
Is my smile as I whisper "You're coming to me"
For death isn't final
As you close your eyes
There's a light far more brighter than blue summer skies
I'll lead you towards it
Our loved ones are there
Laughing and strong
Free of all earthly care
I've been patiently waiting for you to pass through
For death simply means "Reunited with you"

Today was a busy day at Ann's house. For the first part of the day, I sat at Ann's kitchen table and did a puzzle with Abbie and Katharina. Mattie was an outstanding puzzler. In fact, he was only 7 years old, and could attack 500 piece puzzles without a problem. While I was struggling today to help the girls with their puzzle, I thought two things. First my skills were rusty, since I hadn't done a puzzle with Mattie for almost a year, and second, I thought if Mattie could see me today, he would have been laughing. Laughing because he would have had the puzzle done by the time I put together the border of the puzzle.

I had the chance to talk about summer camp with Katie and Katherina today. They showed me, with excitement, their camp schedules and even pictures of the cabins they will be staying in. It is entertaining to be around children who range in age from 8 to 12. Entertaining, because these are very different age groups and yet, somehow we have to find a way to make it work. Naturally a 12 year old is trying to test the limits and yet I find there is a fine line between allowing that to happen, and helping to empower this age group in the decision making process.

Katharina and I had several chances to chat with each other today while we were at Katie's softball game. Katharina was telling me that she thinks about Mattie all the time, especially when she cares for her pet bird, a bird Mattie was intrigued by. Katharina is an only child, as was Mattie, and as am I. Only children communicate with each other in a particular way. I can't quite describe it, but I can usually tell if someone is an only child. Katharina and I spoke about Mattie's things this afternoon. I am not sure how we got on this conversation, but I basically told Katharina in answer to her question that I haven't given away any of Mattie's toys, stuffed animals, and clothes. Now mind you she is only 10, but her response was fascinating. Her response was very empathetic, and she basically said, she could understand my decision and most likely would have done the same thing. I was very touched by her response because it was not only sensitive, but it was as if she was telling me she understood Mattie was important, and you can't just give his things away.

Tonight, Ann invited over Carolyn (our Walk Raffle Coordinator), and Mary (our Walk Publicity Coordinator) to her house for a chance for us to reconnect. I have gotten to know Carolyn and Mary quite well through Mattie's illness, and they have been extremely supportive and also helped enable the Walk to be a success. We had a nice time chatting and sharing stories. Sometimes being around moms can be difficult for me, however, Carolyn and Mary are very sensitive to my situation, which helps tremendously. I appreciate so many of you who have reached out to me today to let me know your support is present in my life while Peter and Ann go on travel. It means a great deal.

I received four messages today that I would like to share with you. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Just wanted you to know I was thinking of you both on this Tuesday and everyday."


The second message is from my friend, Charlie. Charlie wrote, "I can understand how difficult it must be to believe in a merciful, loving G-d when your loved one dies too young and in pain. In Judaism, it is permitted to question G-d, to rail and be angry at G-d, but what is not, is to walk away and ignore or deny him. We believe G-d can handle all the anger and all the pain in your heart. What happens in our world that is not positive is hard to understand and even harder to accept. My own position is that we (the human race) have free will to make decisions and therefore sometimes things may (will) happen that we don't like. Sometimes I think G-d must cry at the choices we make here on earth but I believe that he leaves us to sort it out because he's given us the gift of deciding our own path. I also believe at the end of our time in a physical realm our spirits will find a way to reconnect with those we love who have gone before. I am sure many people who read the blog will disagree with this and that's fine too, whatever carries one through the day and does not harm another is a good path to walk. One of the tasks of grieving is to find a way, a place to put or channel all the feelings including the anger and despair, into something creative or positive or that honors the person we lost. I respect your efforts to do that and I continue to send the energy of my practice to you to help you as you walk that most difficult path. I hold you gently in my thoughts."

The third message is from my friend and colleague, Nancy. Nancy wrote, "As this is Tuesday, I wanted to send you a message. I am proud of you for challenging old beliefs. Sometimes that is the only way that we grow. Children are not supposed to die before their parents and, yet, we know they do. You more than most know that this is true! I took in your words and feel your pain as time doesn't heal all wounds. We may learn how to cope differently with these terrible feelings. You show courage in getting up each day and dealing with all that you handle especially when all that you can handle is just getting up. That is a miracle when your heart is aching! As far as G-d works miracles in his own time and that Mattie is waiting in heaven for you and wishes you were here. First, I do believe that G-d tests us to see whether we have the strength to deal with his 'miracles'. Mattie's illness and eventual death is no miracle. It is painful, unfair, and enduring. What I do believe is true is that G-d's plan doesn't always fit our dreams and expectations. People don't either! I was rereading the Serenity Prayer this morning and writing about it in my journal. For your consideration:

God grant me the Serenity to accept the things I cannot change
To accept the things I can change
And the Wisdom to know the difference.

I agree with Rev. Sharon, G-d is strong enough to handle all that we ask of him, push him away when we doubt, and accept us when we ask for forgiveness and want his help. G-d asks us to believe in a greater power than man. Sometimes I think all we have is G-d. I know that you have difficulty with this and that's ok. Deep down, you need to be angry with someone or something and what better ideal than G-d. I believe this is the hardest piece of grieving, handling our anger at the things we can't control. Cancer is sometimes bigger than us and we are powerless. That is the hardest issue to accept, that we can't protect our child. It is the greatest challenge for a parent. All we can do is love them the best way possible and there you can have some peace as you did this supremely with Mattie. I know that the following week will be a challenge. I am only a phone call or email away. Please reach out if you need too. I am here for you. Please take care of yourself today and be kind to yourself as you are with others."

The fourth message is from Mattie's social worker, Denise. Denise checks in with us periodically and I was very touched by her comments today regarding Mattie. I am happy he is still on Denise's wall of fame in the Lombardi Clinic, and I do agree, Mattie was special and famous in his own right. Denise wrote, "I could not let this day go by without stopping in to say hello and checking in on you two. I enjoyed seeing you on the 24th and appreciate you all bringing Sean to the clinic. I think he had a powerful impact. Today, I am reminded that it is Tuesday, the 8th of June and 9 months since you lost your precious Mattie. I recognize that you all are still going through a difficult time and I want you to know the door is always open for you. On Sunday, my husband and I went to the Brooke Conservation Center and we saw an exhibit they have focusing on butterflies. I saw two cocoons and could not help, but think about Mattie and his interest in butterflies. Actually, I think of Mattie as a butterfly because he transformed the lives of so many people here at Georgetown. I once asked him for his autograph because I told him I had a place on my wall for people who I thought were going to be famous one day. I think he achieved that, certainly here at Georgetown and through the work of your foundation. You all continue to be in my prayers, I know it's a long road and not an easy one."

Monday, June 7, 2010

Monday, June 7, 2010

Tonight's picture was taken in December of 2008. Mattie had completed both limb salvaging surgeries, and this was the first time I actually saw Mattie attempting to walk independently at home. I was so excited, I grabbed my camera to record this special moment. Unfortunately, I did not get to see Mattie walk much at home. Between intensive chemotherapy treatments and most likely because his cancer was so aggressive, he really did not have the energy for physical therapy at home. Nonetheless, I recall this walking moment in time so vividly.

Poem of the day: I Wish You Were Here by Angela Salyer

Although from Earth, our loved ones are gone

They live in our hearts as time goes on

God truly blessed us with the time that we had

Though their departure leaves us very sad

"Time heals all wounds" We've heard it before

A broken heart gradually begins again to soar

God works miracles in His time, not ours

Not by our wishes, but by faith and prayers
By each person he claimed, we were given a gift
Wonderful memories for our spirits to lift
Reunions and Christmas, and simple every day fun
To carry with us always, until our work here is done
Thank God for Kodak, for video and audio-tapes
And for the time together that this family takes
The message is clear from those who have started life anew
"We're waiting in Heaven for each and every one of you"
Each one would say "Don't cry for me dear"

"This place is wonderful, I wish you were here"

Tonight's poem causes me to pause. Why? Maybe because I want to believe what the poem is saying or because I want to say to the author, are you kidding me? Three lines in particular evoke all sorts of emotions within me. They are: 1) Time heals all wounds, 2) God works miracles in his own time, and 3) we're waiting in heaven...I wish you were here.

Do I believe that time heals all wounds? This is a statement I find as trite and condescending as the term, "new normal," which was used in the hospital with us when Mattie was first diagnosed. Time does not heal all wounds. In fact, some wounds will always be there, and unlike a surgerical scar which is visible to the eye, with grief, the scars are internal. They can't always be seen by an observer, but they are indeed there. If you think I am being negative or pessimistic, I suggest that you imagine having your own child diagnosed with cancer, have to endure months on end in the hospital undergoing all sorts of treatments and surgeries, only to eventually hold your child in your arms has he/she fights death. If you think you can forget any of this, and you think there will not be some sort of wound remaining forever in life, then I want to know your secret.

As for the line, "God works miracles in his own time." Well perhaps! In fact, prior to Mattie's cancer, I most likely would have accepted this statement, and not questioned God's ways. However, I have greater doubts now about my faith and also about God's abilities. I have seen death, but painful death, bestowed upon a child. My child! So my belief in miracles right now are not too forthcoming.

The final line, "we're waiting in heaven...I wish you were here," naturally makes me re-evaluate the premise of my whole religion. After all, if children can get cancer and also die, and die in an inhumane manner, then I have to ask what type of God allows this to happen? Clearly, I am angry, and clearly, there are many issues I need to explore and come to peace with (if possible). I remember Rev. Sharon, the chaplain at the Hospital, who spoke to me weekly over the course of Mattie's illness. Sharon saw my evolution from a spiritually based person to someone who couldn't even discuss religion. However, the beauty of Sharon is she said that God is strong and can handle whatever I have to say or throw out at him. I appreciated her saying this because naturally there is great guilt over admitting the things I am saying tonight. It goes against years of religious education and my core belief system.

As this week is just beginning I am coming to terms with the fact that Ann and her family are going on a vacation in a few days and Peter is leaving on a business trip to Africa on Friday. These are big changes in my life, since these two people are my, physically present, daily support system. I will miss them both greatly. I spent the day with Ann and her children, and we ran all sorts of chores, got lost trying to find Goodwill (which I assure you we can be funny to watch, since we are both directionally challenged), and in a short period of time we went clothes shopping, to the bookstore, and also to get ice cream. I sometimes forget the pace one has to keep when you are with children, but with Mattie I was always hopping from one thing to another. Which is why I coined the term, "mommy speed shopper." Mattie HATED shopping, and in order to get pick things out with him, I basically couldn't stop moving, I would literally grab things in a simliar fashion a track player passes a baton to the next runner. 

Tonight I posted pictures of the 9 raffle items that were featured at this year's Mattie Miracle Cancer Foundation Walk. Carolyn, our raffle coordinator, and her raffle team did an outstanding job soliciting businesses and individuals for fantastic items! The raffle was a huge success at the Walk. We want to thank all our pre-raffle ticket sellers and of course all purchasers of raffle tickets.

Item #1 - Annapolis Sailing Excursion
Sail Away for a fabulous day on the bay aboard the Windemere – a 39’ sailboat docked in Annapolis. Day sail is for up to 4 people for 4-6 hours and
can be scheduled for week/weekend day this summer (excluding Memorial Day Weekend, July 4th Weekend and June 12-20).

Item #2 - Washington Nationals Tickets
Enjoy a Saturday night out at Nationals Stadium – June 19 – first pitch at 7:05pm – when the Nationals take on the Chicago White Sox. Game package includes 4 Diamond Level seats with parking and a $35 per ticket allowance for food or merchandise.

Item #3 - Summer Fun Basket

The Dog Days of Summer are just around the corner – and this item has everything you will need to keep the entire family entertained and excited all summer long –including SSSAS Summer Camp, Baseball Tickets, Top Golf Membership and so much more!

Item #4 - Professional Portrait Package

Capture that special moment with a professional portrait by a premier DC photography studio. This priceless package includes sitting fee and a free 8 x 10 portrait.

Item #5 - Around Town Gift Basket
Enjoy all that Alexandria has to offer with this variety of gift certificates
from local restaurants and vendors.

Item #6 – Let the Sun Shine In Basket
Brighten your day and your home with this cheerful collection of “sunny” home adornments including, a handmade quilt, note cards, sun catchers – and other items to let the sun shine in - even on a rainy day!

Item #7 - Pamper Me Package

Everything the “Lady of the House” needs to feel relaxed and pampered –
from a day at the spa to some special items just for her!

Item #8 - Washington Capitals Fan Pack
A Caps enthusiast’s dream – a fabulous collection of Caps Memorabilia and Autographs!

Item #9 - a case of BBQ sauce, from the Pork Barrel BBQ restaurant in Del Ray, VA.














I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you got out yesterday and that you enjoyed the day. I too have noticed that people can no longer pay attention to only one thing. I was at a concert yesterday and it seemed as though half the audience was either talking or texing on phones during active portions of the concert. This was in spite of all the stage effects and the usual things that surround an open air concert. Baseball is a game from our agricultural past when time was less of an issue (it is one of the remaining untimed sports) and it runs at a much slower pace. So to keep the "multitaskers" occupied, they've added all these other things/events to the game experience. I think that all of this has subtracted something as well; we've lost the ability to focus for any length of time on an event or a person or a project. In a sense, we are all becoming ADHD like. I am glad that given your feelings about baseball, that you were able to "connect" with Margaret and have a good day in conversation and people watching. As I sit here looking out into the woods, connecting with nature and listening to the birds, I wish you the serenity I feel when I take time out to do this. I hold you gently in my thoughts."

Sunday, June 6, 2010

Sunday, June 6, 2010

This picture was taken in June of 2008. A month before Mattie was diagnosed with cancer. Mattie was at his kindergarten class' end of the school year party. Sitting on the bench next to Mattie was Larry Jenney, one of Mattie's kindergarten teachers. The children sitting next to Mattie are Cameron and Mason, and the little boy in the background with his fingers up in the air, is Xander. Mattie had a good time at that party and he was proud of the fact that he completed kindergarten and had a good year. None of us knew at the time that this was going to be our first and last end of the school year party.

Poem of the day: Eternal Peace by Lisa Hunt

As I glanced across the land,
the nature and beauty seemed endless.
I felt so small in comparison, and I longed for you to be
beside me, sharing the moment together.
And just as I was almost lost in the vastness of the nature and
beauty, you sent me a butterfly, that landed next to me,
fluttered for a while then rested on a flower, gently flapping
its wings. So small yet so beautiful.
As I looked at the nature and the beauty surrounding me, I
thought of you and did not feel alone anymore.
I thought of your life, and of your death. I then thought of
your eternal peace, freedom and tranquility.
And then I smiled, and thanked you for sharing the moment with
me after all.


Mattie's preschool teacher and our friend, Margaret, invited us to go with her and her husband to a Washington National's baseball game today. Peter was very excited about this since this is not something we typically do together. I have many interests but baseball isn't one of them. I am quite familiar with the Red Sox, it is kind of a necessity when married to a Bostonian, but beyond the Red Sox, I draw a blank. I think watching a baseball game with me probably isn't that exciting either, since in many cases I tune out. Fortunately for me, Mattie did not fall far from the tree. When we would go with Peter to Nat's Stadium, Mattie would last about 30 minutes in the stands and then wanted to walk around the park. I know many of the stores at the Stadium, but NOT much about what actually goes on during the games.

Today was an overcast day in DC, and while at the game, we experienced drizzle to heavy rain. Somehow that did not bother me, I am not sure why, since I am not a rain person. But it could be because Margaret and I talked throughout the entire game. We talked about various things and when we are together we always seem to have a lot to talk about. So in all reality, seven innings of baseball flew by! However, unlike games I attended in the past, I saw the Stadium in a new light today. People are attending and watching the game, naturally for the game itself, but there is a whole show within the show that captures people's attention. For example, there were four people who dressed up like US presidents, and these four had a race right on the field. Apparently the joke is that Teddy Roosevelt never gets to win this race. Why I never observed this race during prior visits or knew this inside joke before is beyond me! Then there are these young and energetic folks who are the "Nat's Pack." They are jumping around to music, acting as a cheering squad and at certain points in the game, throw t-shirts to people in the stands. But it did not end there. Professional camera men were running around capturing people in the stands talking, kissing, you name it and displaying it on this huge screen for all to see! Margaret and I even had our picture taken, by a roving photographer, who then gave us this business sized card which told us where we could purchase this picture within the Stadium. Being in a baseball stadium has become a sensory overload type of experience. I was thinking about this today, especially since I found this same kind of freneticism present on the cruise ship we sailed on in February. I believe baseball and vacationing are a simple reflection of our times. We are living in the age of information and sensory overload. So much so that we don't only experience this in our work world, but it also translates into our leisure activities. I asked Peter what attending a ball game was like when we were growing up! I asked him if there was loud music, people roaming around selling things, taking pictures, neon signs flashing before your eyes, and the list goes on. The simple answer Peter gave me was.... NO! So the question becomes what has changed? Baseball, I am pretty sure is a sport that has remained consistent in terms of how it is played from when I was growing up to now. However, why were kids and adults able to sit still and just enjoy the game without other distractions back then, but now we need so much to focus our attention? For me attending the game was a wonderful outlet to get out of the house and to connect with a friend, so I realize I do not represent the average baseball park attendee.

Tonight I posted pictures of some of the amazing volunteers who helped make the Mattie Miracle Cancer Foundation Walk possible. This Walk couldn't have happened without these amazing people. Friends who devoted time, energy, and their own financial resources in many cases to make their portion of the Walk run successfully. To all our volunteers, we are humbled by your support, care, and dedication to us and the Foundation.  Unfortunately we did not capture all our fabulous volunteers, so these pictures are not comprehensive, but I remember each and every one of you, and know..... We are indebted to you!

Left: Our registration tent volunteers! Christine (our registration coordintor), along with Tanja, Jennifer, and Katharina.

Right: Coach Dave Holm, a vital member of our logistics team!

Left: Debbie, our co-coordinator of children's activities, hard at work.

Right: Sue, our co-coordinator of children's activities, also hard at work. These ladies put great thought and effort into all the activities, from butterfly crafts to the 7 summit games!

Left: Ellen, our volunteer coordinator. Ellen coordinated over 70 volunteers, and made sure that there were ample volunteers assigned to each event at the Walk.

Right: Liza, our co-coordinator of the logistics team, overseeing set up and making sure things were going according to plan.

 

Left: Larry, one of Mattie's kindergarten teachers and the coordinator of the rock climbing wall. Larry assured the safety of all our rock climbing participants.

Left: Peter running around and hard at work before the Walk began!

Right: Tamra, our co-coordinator of the logistics team, along with Johnny, another vital member of our logistics team!

Left: In the center of this picture is Mary. Mary was Mattie's technology teacher. Mary was an important part of our logistics planning team, and also designed the memorial video of Mattie at the walk (which was featured in the Foundation Tent). Mary also spent time at the Caring Creations Vendor table, and sold many beautiful pieces of stained glass that her friend, Bobbie Burnett designed.

Right: A picture of some of our volunteers, listening to Ann as she was giving last minute volunteer instructions. From left to right is Sue (co-coordinator of children's activities), Marisa (coordinator of the bake sale), Leslie and her husband (volunteers at the concession stand), Carolyn (our raffle coordinator), and Christine (our registration coordinator).

Left: When Ann (our Walk Chair) showed me this picture, I immediately titled it in my head.... "Here comes trouble." One of us alone can be a handful of energy, but together we are quite a force. Dr. Bob snapped this picture of Ann and I as we were walking at the event. You should know that we never stopped walking while he was trying to take the photo and at one point we almost walked right over Bob. In a way the picture is quite symbolic of our friendship. By this point in the day, I was physically and emotionally exhausted, and literally I was leaning against Ann as I was walking around the track. I also notice in the picture that I am carrying an ice tea bottle. This wasn't mine! Tricia (one of Mattie's amazing nurses) was worried about me, and knows that I never drink much. So she gave me her iced tea and she expected me to drink it. I think that is worth commenting on, because even to this day, Tricia looks out for me.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Yesterday was definitely a day of art and creativity. Art allows us to express our deepest feelings in ways that go beyond simple words so I am glad you had this opportunity to try out something new and creative. I have to say I admire your efforts as I am hopeless with paint or any sort of drawing materials but I do so appreciate anyone who can make things look as they want them to. I have to admit that I checked your painting for ants/roaches or any other small creatures that might be lurking among the brush strokes. While I don't see any visible I know they have a place in your heart as symbols of a bug loving little boy. As I practice today I will send you the energy to use to further your creativity in any way you can. I hold you gently in my thoughts."