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."

Saturday, June 5, 2010

Saturday, June 5, 2010

Tonight's picture was taken in October of 2008. Mattie's art teacher, Debbie, came over to our home and was teaching Mattie about Kachina dolls, which 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 Native American children about their religion. Mattie designed a beautiful doll that day, which still sits proudly in our living room! Mattie appreciated art and had this amazing force of creativity within him, that I believe served him SO well through his months of treatment and surgery. What I love about this picture was that it captured two artists at work, and in tune with each other!


Poem of the day: Joy and Sorrow by Charlie Brown


Life is joy and sorrow
And we don't get to choose
Why our portion is something
That we have to lose
I had you in my life
For only a short time
And together we had to face
An insurmountable climb
Now you are in a place
Where I cannot go
And when I think of you
It's with joy and sorrow
I honor your memory and spirit
And all that was you
And I will do my best
To make important dreams come true
To keep faith with myself
And those who are our friends
And fight this dread disease
Right up until the end.
Although you are not here
I know that you can see
And I will do my best
To make you proud of me.

I had the wonderful opportunity today to spend the day with Debbie, Mattie's art teacher. Debbie invited me, Junko, and Luda to her studio for a private lesson in Sumi-e art. The local artist who spent the day with us was Yoshiko Oishi-Weick. Yoshiko expresses her profound love of nature through her Sumi-e brush. Sumi-e art has been practiced in Japan for centuries and is one of its oldest fine-art forms. Using simple black ink and brushes of various sizes, Yoshiko's works follow the theme of "Nature is Beautiful."

She studied Sumi-e since 1980. Her works have been displayed in galleries and exhibitions around the world, including in Tokyo, Beijing, Seoul, and Paris. She has also been working as an Artist in Residence at the Wesley Theological Seminary in Washington DC since 2004.

Yoshiko never met Mattie, but she saw Mattie's "Mr. Sun" painting in Debbie's studio in 2008. She commented to me how artistic Mattie was, and unlike other strangers I have met, Yoshiko wanted to see a picture of my little artist. So I grabbed my wallet, and pulled out all my Mattie pictures. She immediately told me that she saw the resemblance of Mattie to me. She couldn't get over the story I was telling her about Mattie, the ordeal and pain he dealt with, and of course the fact that he died at age 7. Yoshiko is a deeply spiritual person, and Debbie warned me about this, since I have a feeling Debbie knows that I am struggling with my own spiritual issues right now. Yoshiko however felt that Mattie's spirit was in Debbie's studio today and was channeling his energy through my painting. It was a very meaningful comment, and in a way, it was surreal to be standing in the exact spot that Mattie created Mr. Sun. Debbie's studio reminded me of Mattie today, I remembered that day, November 8, 2008, when Peter and I took Mattie to the studio to paint. I remember his energy and his focus as he began painting a canvas that was four times his size. Somehow he did not find that daunting.

Yoshiko was extremely patient. She taught us the art form of Sumi-e, which involves using a bamboo handled paint brush and black ink. For over 8 hours today, I worked on learning how to hold the brush and find the right consistency of water and ink on paper to create a camellia flower. Sounds simple, right? What could take me 8 hours to learn? Well I can't explain it, but using this brush and finding the right amount of water and ink on the brush to create the right tone and shading on the paper is close to impossible. The running joke today was I used more paper than any of the other students, and literally I worked on painting leaves for HOURS! I still did not master it. Yoshiko did come up to me after the session was over, and told me that she feels I did a great job and have real promise as an artist. She said that our cultures are different, and for my first time picking up such a brush and using this kind of ink, that I did very well. It was nice of her to say that, because I admit I was getting frustrated because I literally couldn't figure out how to thin out the ink so it wouldn't come out too black, and then when I did thin it out, it came out too watery on the paper. Nonetheless, what I think I discovered about myself today is I always wanted to be able to paint. I admire painters deeply, and I wish I could express myself in this format. Yoshiko then held up one of Junko's flowers and one of my flowers, and we had to comment on what aspects of them we liked. But what Yoshiko was trying to show us is that in our paintings, our personalities shone through. That part was very interesting to me psychologically! I captured some pictures of our creative process!

Left: From left to right are Luda, Debbie, Yoshiko, and Junko
Right: From left to right are Luda, Debbie, Yoshiko, and Vicki

Left: One of my final products.... Vicki's Camellia!

In the midst of our lesson, we took a lunch break. But it wasn't an ordinary lunch. We had traditional Japanese fare in light of the painting style we were learning. Junko made homemade miso soup, Luda brought us all types of sushi, Debbie prepared a dish, and also Debbie served us on beautiful and authentic Japanese china. We ate lunch in Debbie's garden. I should mention that Debbie has a Chinese maple in her garden dedicated to Mattie, with a childlike angel in front of it. So the setting was very special for us and the conversation was flowing.

All in all, it was a very memorable day in which Debbie truly worked very hard to provide us with fun, education, art, food, and friendship. 

While I was painting I was sitting next to my buddy, Junko. Though sumi-e painting is supposed to be done in a quiet and meditative state, Junko and I couldn't help but talk to each other. We had a good time chatting about our art and at one point we took a break and talked about post-Walk feelings. Feelings which I found illicited tears. I was crying and Junko was crying too. We do this well together. But I appreciated her reflections, because for me to pretend that I am fine and life is happy isn't real for me. Somehow Junko understands that.

I would like to end tonight's posting wiht a message from my friend, Charlie. Charlie wrote, "I know that it is difficult for you to see the end of this school year and know that Mattie never had the chance to be a part of it even though he was still in treatment when it started. Thank you for posting the picture and story of Lauren and her bows; I know that the information that she is spreading with her project will last long after the bows are gathering dust. We often forget that the stories we share with our children are the ones with the greatest staying power and the most meaningful in our lives. You are a storyteller and a wonderful one, perhaps part of what you are meant to do is to find a way to spread Mattie's story even farther than it is now. As I practice today I send you the energy to help you through this time; I hold you gently in my thoughts."

Friday, June 4, 2010

Friday, June 4, 2010

Tonight's picture was taken in August of 2008. Mattie was beginning his first cycle of chemotherapy, and we were getting acclimated to spending time in the Lombardi Pediatric Cancer Clinic. Jenny and Jessie (his art therapists) had the brilliant idea of allowing kids to paint the ceiling tiles. Mattie thought that was a phenomenal idea, and jumped at the chance to paint a tile. Naturally in light of his Scooby Doo phase, we created a tile with the entire cast from Scooby Doo. However, this was not the only ceiling tile Mattie worked on during his long and extensive treatment process. In fact, Mattie went on to do a huge cockroach tile, a rainbow tile, a train tile, and a haunted house tile. Though Mattie is no longer physically with us, his tiles remain up in the Lombardi Cancer Clinic. I will never forget creating these tiles and the joy this painting project brought into our confined lives, and each time I visit the Clinic now, I always stare up at the ceiling to check on Mattie's creations.

Poem of the day: Grief by Charlie Brown


Since you died
I have a new partner.
We dance a lot
Even when I don't want to.
His name is Grief
And he spins me 'round
To tunes not of my choosing.
Unsung music of missed opportunities
And things that will never be.
I will not see you dress for the prom
Instead I am at the dance
where my steps are
Punctuated by my tears
Sometimes many
Or just a few
But always there.
I wonder when
He will leave me
And move on to
A new partner
Leaving me remembering you
With smiles instead of tears

During Mattie's treatment process, I had the good fortune to be introduced electronically to a mom living in Pennsylvania whose daughter was diagnosed with osteosarcoma about a week after Mattie. Lauren is 12 years old, and during Mattie's 15 month battle, Carey (Lauren's mom) and I would email each other back and forth at all hours of the day. We had the wonderful opportunity to meet this family when they came down to the Candlelighter's Christmas Tree lighting ceremony held at the Old Post Office Pavilion building in Washington, DC in December of 2009. Though that event was challenging for me, I enjoyed meeting Lauren and her family. Lauren has a brother named Matthew, who is Mattie's age, and because I read Lauren's blog, I felt as if I knew her in a way, despite never meeting her in person before. I am happy to say that Lauren is doing well thank goodness, and went back to school this year. Carey e-mailed me today and shared the following message:

"I haven't written in awhile but I do follow your blog and I think about you and Peter often. About a month ago, Lauren had to give a speech on how to do something, at school. She makes duct tape hair bows and did her speech on how to make the hair bows. After that, everyone in 6th grade wanted a duct tape hair bow. Lauren decided to make them and donate the proceeds to your Mattie Miracle Cancer Foundation. Attached is a flyer that she put up in school. She has gotten many requests for the bows (and they even announced it over the loud speaker in the morning) and on Tuesday she will start selling them at lunch time in the cafeteria. She was only charging 25 cents for the bows but the teachers convinced her to raise the price to 50 cents. She has 3 girls helping her with making and selling the bows. It won't be a big donation, but if it can help someone going through what she and Mattie endured, that's her goal. I'll be sending you the donation once school is over."

I am so impressed with Lauren's (she is pictured in grey on the left hand side of this photo) initiative and her passion to help others with pediatric cancer. I found her bows for hope idea very inspiring and I wanted to share it with you tonight. I also am thrilled that Lauren's three friends are helping her with this project, and in essence Lauren's actions are causing her generation to talk about cancer and the impact it has had on her and other children.







I had the opportunity to spend some time at Ann's house today. This was her children's last day of school, and since Ann was coordinating her older daughter's end of school party, I was happy to stay at her house and spend time with Michael, her son, until she got home. I appreciate Michael's sense of humor and though we did independent activities throughout the day, Michael would periodically check in with me, and we would talk. In the quiet moments I had today, I picked up a book I started months ago. In fact, I have about three books I have been trying to read for the longest time, but just can't seem to sit still long enough to complete any of them. Well today I made significant headway into Nicholas Sparks' new book, The Last Song. As the book evolved, I could tell one of the main characters was most likely sick with cancer, and as I predicted it, I was correct. I began to be absorbed into the book and the description of the shock about the diagnosis and the pain of caring for someone who is dying from cancer. In fact, here is the excerpt from the book that struck me, because it was as if Sparks' was writing this to me...... "On his way out of the office, the doctor had given him some information. Little pamphlets and a list of websites, useful for a book report but good for little else. Steve had tossed them in the garbage on the way to the car. As he stood beneath the winter sun on the deserted beach, he tucked his hands into his coat, staring at the pier. Though his vision wasn't what is once was, he could see people moving about or fishing by the rails, and he marveled at their normalcy. It was as if nothing extraordinary had happened. He was going to die, and sooner rather than later. With that he realized that so many of the things he'd spent time worrying about no longer mattered. His 401k plan? Won't need it. A way to make a living in his fifties? Doesn't matter. His desire to meet someone new and fall in love? Won't be fair to her, and to be frank, that desire ended with the diagnosis anyway."

What struck me about Sparks' excerpt is that when cancer touches your world, for you, the world stops, and it is almost incomprehensible that the rest of the world doesn't feel the same way. Though I never threw medical facts in the garbage, I did throw many brochures and information away that pertained to the psychological ramifications of cancer. I did this because the information was trite, not real, and certainly not sensitive to the fact that each person and family copes with cancer differently.

As I continue to search through the pictures from the Walk, I have noticed some wonderful photos of children of all ages that our friend and photographer, Jeff, captured. I hope you enjoy these tonight. To me, these are the faces of hope. Hope because to me, their presence at the Walk is crucial. I want the younger generation to be able to understand that pediatric cancer is real, it affects families, and their awareness and knowledge are vital to helping future generations. Some of these pictures are priceless and I assure you there are many more to come. 

 

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for posting the pictures you chose yesterday for the blog. First, the one of you and Mattie, reminding us how important it is to step outside the created "rules" occasionally to create islands of joy in our lives. Little events like putting up the Christmas lights in July can help to remind us of what life's celebrations are all about. They are about our connections to and with each other and not about specific dates on a calendar. I really appreciated seeing the posters you created for the walk. Those statistics are horrifying and hard to believe; so many children facing the fight with so little funding to support the battle. It is hard to comprehend how we set our priorities. And finally, your words about Sean's comments. While cancer may have been what sent Sean on the road he is currently on, he is still here to walk that road. To be a mother deprived of one's child is to be on another road. That you can find and appreciate the connections and love that battling on Mattie's behalf brought into your life, says that you are on your own road to recovery, although it certainly has a different trajectory than Sean's. It is hard to sit and examine one's feelings in this way, I respect and honor what you've done and all you have accomplished so far. I hold you gently in my thoughts." 

Thursday, June 3, 2010

Thursday, June 3, 2010

In light of my current mood, I felt like posting this picture tonight taken in July of 2008. Specifically, Mattie was diagnosed with osteosarcoma on July 23, and two days later it was my birthday. A birthday I will never forget. Though I was smiling in this picture, I was in a total state of shock and fear. As you can see, there were Christmas lights behind us. Mattie loved Christmas lights, and it was a tradition that he and Peter would create a display together, the day after Thanksgiving. Despite the fact that it was July, we all needed something to brighten our mood, and Mattie suggested Christmas lights. So out came all the Christmas boxes, and our deck was transformed. In essence this was the beginning of the change within me. Prior to Mattie's cancer diagnosis, I lived a rather predictable life. Meaning that Christmas lights would only come out in December. But cancer allowed me to think beyond the acceptable parameters of life.


Poem of the day: I Dreamed Last Night of Heaven by Brenda Penepent

I dreamed last night of Heaven
As I followed you there
I felt your presence, heard your heart,
I almost touched your hair.
I remember crying
Just because I missed you so
Though I was right behind you
I didn’t want you to go.
I begged for a reminder
To help me see your face
A thing to hold and touch
But it left an empty place.
I looked for you in everything
I asked for you by name
I know that you were with me there
I’ll never be the same.
I dreamed last night of Heaven
I ache for one more glimpse
Of the love I felt while near you
And the beautiful heart I miss.


Tonight's picture brings back the memories I have of Mattie being diagnosed with cancer. It was a time when our world seemed to be falling apart all around us. At the time I had no idea how we were going to get through this, much less help a six year old cope with such devastating news. In my wildest imagination, I had no idea that a year later, Mattie would die. It is a thought that no parent wants to think about, or can think about when battling cancer ferociously with chemotherapy and surgeries.

I recall on May 23, 2010, at the Mattie Miracle Cancer Foundation Walk, Sean Swarner said that cancer was one of the best things that ever happened to him. That comment has stuck with me, and has plagued me. Sean is a resilient young man who has overcome tremendous obstacles and escaped death twice, so I have no doubt in that context cancer has profoundly altered his life. It most likely gave him the passion, courage, and determination to accomplish all the things that he has and will continue to do. However, do I agree with his comment? Well the answer is perhaps! Naturally as a mother who lost her only son to cancer, I most definitely can not say that cancer was the best thing that happened to me. On the contrary it is the worst and most horrific thing that has happened to me. Cancer robbed me of the chance to raise Mattie, to watch him grow, and to nurture and guide him into the future. It has shattered my hopes for the future I thought I would have, and it has deprived me of the chance to experience the special kind of bond and love Mattie and I shared together. But what else has cancer taught me?! Cancer has been a wake up call in so many ways. Once you have experienced a life and death situation, it is impossible for this not to change your mind and your heart. I have seen that life is fragile, that bad things can really happen to good and innocent people (even children!), and that nothing is guaranteed in life. Cancer has caused me to re-evaluate everything in life, my priorities, my career choices, and my future. In the midst of all this trauma and tragedy, Peter and I have also seen amazing acts of kindness, love, generosity, and compassion. If it weren't for Mattie's cancer, I would never have met the extraordinary people at Georgetown University Hospital, I may not have seen Mattie's two school communities unite forces to create a very tight and amazing network of support, and I  may not have slowed down enough to truly appreciate the wonderful friends I have around me (friends who would volunteer hours upon hours of their time to make sure this year's walk was successful). So though I wouldn't say cancer was the best thing that happened to me, I would say that cancer enabled me to see the realities of life much clearer and to appreciate the connections to people that Mattie built for me.

I wanted to share some more Walk pictures with you tonight. These pictures illustrate the posters that surrounded the Foundation table at the Walk. It took me weeks to comb through the internet to find these facts and to put them together in a coherent and logical manner. I was pleased with the outcome, but naturally perplexed and outraged by what the facts revealed. In essence, I think you will agree after reading these posters that MUCH more needs to be done to fund pediatric cancer research and MUCH more needs to be done to psychosocially help children and their families through the cancer journey.

 

 

 

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What wonderful pictures on the blog, starting with Mattie in the PICU. The nurses and the staff never had a clue what kind of a whirlwind was about to descend on them. And he was a whirlwind, sending out love, hope and joy; sometimes frustration and anger but always with the heart and mind of a creative seven year old. Those are great pictures from the walk as well; it is clear that tremendous planning went into every bit of it. This walk was like planning for a huge family event, it takes all your time and energy, is wonderful while it is happening and then a day or two after, you find yourself asking "is that it?" The letdown you feel is compounded by the grief you are already carrying and completely to be expected. Be gentle with yourself and find a way to do something just for you (massage, spa, or whatever) in the next day or two. As you find your way back onto the path forward I send you the energy of my practice to guide your steps. I hold you gently in my thoughts."

Wednesday, June 2, 1010

Wednesday, June 2, 2010

Tonight's picture was taken in September of 2008. Mattie had quite a sense of humor despite being on chemotherapy and locked up in a PICU. Peter helped Mattie blow up rubber gloves to look like turkeys. Mattie then opened up the curtains in his room, so that the nurses in the hallway could see his turkey display and performance. In fact, he startled many nurses and residents that day. After all at that point Mattie was really an unknown to the hospital staff since he had only been hospitalized a month. As the months wore on, practically everyone knew Mattie, and understood his need for humor, entertainment, and challenges.

Poem of the day: The Reunion by Charlie Brown


Mom, I know that you miss me
And I miss you too
I wish I could come back
And spend the day with you
And tell you of the things
That make my heart soar
Of rainbows and angels
And oh so much more
I run and I jump
And often I fly
Sometimes I see you
So try not to cry
I miss you a lot
But I can't come home
I am with you in spirit
None of us are alone
One day we'll be together
I promise, you'll see
And we'll celebrate our reunion
You, Daddy and me.

I spent a good portion of the day working on post Walk paperwork. I am still trying to dig out from this event. I made some headway today, but have quite a ways to go. Later on in the day, I spent some time with Ann and her children. But for the most part I would say I spent the day alone, and when I wasn't alone, I did not spend much time talking. I would say post-Walk has been challenging for me and I am not sure when this feeling will lighten up.

I would like to share more photos from the Walk with you tonight. The photo on the left features the registration tent, with our registration coordinator, Christine in the center, and going from left to right is Tanja, Jennifer, Katharina (who is 10), and in the back corner of the registration tent, you can see Ellen, our volunteer coordinator talking to her son, Tyler.

Right: The climbing wall was a popular attraction at this year's Walk. The man with the black jacket and shorts with his back to the camera is Larry Jenney. Larry was one of Mattie's kindergarten teachers, and was the head coordinator of the climbing wall, and did an excellent job managing the line and assuring children's safety.

Left: The climbing wall in action!

Right: I happen to love this particular photo. Mainly because it captures children stringing their MMCF beads onto a backpack clip and taking the process seriously. However, the little boy in the picture is Mattie's good friend, Campbell. There is something about Campbell's expression that makes me feel as if he is deep into thought about the event and his friend.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

   

Left: Mattie's good buddy, Charlotte, walking and beading! Got to love that smile! I know that Mattie loved hearing Charlotte laugh, mainly because when she laughs it just makes you happy, and want to laugh too.

 

 

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I do truly believe Mattie is in a place where he can exercise his imagination and slide down rainbows, fly with birds and build with clouds. I know you grieve and I do too, both for his loss and for you, but if there is life after, Mattie certainly has a wonderful place in it. I've read the arguments for and against the existence of a higher power and all I can say is that there is nothing to lose by believing but much to regret by not having faith. Of course you're angry, Mattie should be here with you, living and learning and growing up with you and with his friends; I wish I could do something to change what we have into what we want but it is beyond any of us. As you work your way through this there will be good days and bad days and yes, around two years is how long it takes. That doesn't mean you forget or you stop missing Mattie; it just means you have the emotional ability to continue to live a productive life. And although you know this, I will say it anyway, that number "two years" is not a magic line that you step over. It is just the average time it takes for those who've suffered the kind of loss that you have to have more good days than bad and to be solidly on a track of living life with loss and with grace. I know that you are having a tough time and I continue to pray for you. I hold you gently in my thoughts."