MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

June 5, 2010

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."

June 4, 2010

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." 

June 3, 2010

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."

June 2, 2010

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."

June 1, 2010

Tuesday, June 1, 2010

Tuesday, June 1, 2010 -- Mattie died 37 weeks ago today!

This picture was taken in September of 2008. It was prior to Mattie's surgeries. Behind me is a syringe pump, so clearly Mattie was receiving some kind of medication. I was exhausted as you can see from the picture, and Peter captured Mattie in motion and smiling. The motto for this picture should be..... You just can't keep a good boy down!

Poem of the day: Be happy for me by Maureen Sheridan

I'm sliding along a rainbow, and the feeling as I glide
So free from my pain and suffering,
And the tears I tried to hide
I'm gliding along a rainbow, and my heart bursting with glee
It's a truly joyous journey
So be happy that I am free.
I'm gliding along on a rainbow, and at last am laughing loud
The colours just get brighter, oh look, I've passed a cloud.
I'm gliding on a rainbow, so young and so carefree,
And as I look I smile cause there's a bluebird following me.
I'm gliding along on a rainbow, and am singing my favorite song,
So dry your tears, be happy for me and try to sing along.
As I glide along the rainbow, I see the light has grown,
So keep me warmly in your hearts, as I enter my new home.

Tonight's poem makes me wonder. Do I believe that Mattie is gliding along on a rainbow and wanting me to be happy for him? Perhaps if you asked me this two years ago, and we were discussing an expected and more natural death, I most likely would have given credence to this poem, and believed it were possible. I most likely would have said, YES! However, there is nothing natural about a six year old being diagnosed with terminal cancer. There is nothing natural in seeing your child suffer immense pain, and fight death. So do I believe the premises of this poem, the answer at the moment is NO! Not only do I have trouble believing this, but I have to say I find NO comfort at all thinking about Mattie entering a "new home." Maybe this means I am narrow minded or maybe this is just my anger impacting my thoughts. Nonetheless, as we enter the 37th week that Mattie has been gone from our lives, I am left with more questions than answers, and a lot more doubts than peace about the future.

Somehow Ann realized that I needed some sort of direction and task today. So she text messaged me with three items she wanted me to try to locate for one of the end of the school year parties she is planning. So that was the first step to getting me out of the house. I had the opportunity to spend time with Ann's children today as well as Katharina. This is their last week of school, and somehow as the last week approaches, I find that their excitement saddens me. Not that I am upset for them, I am very happy for them, and naturally understand that teachers and students all need a break by this point in the year. But the end of the school year signifies to me the unofficial start of summer. The first summer without Mattie! I am directionless on a good day, but the beginning of summer signifies an even deeper loss for me. It is a time for families to connect and for vacations to be planned. Somehow to me this summer symbolizes more isolation.

When I got home this evening, Peter and I went for a walk. I was in no mood to cook dinner, so instead we had dinner by the water. We are both feeling about the same, so our level of conversation to the casual observer might have sounded depressing. But for Peter and I, it only further connects us, because we truly understand how the other is feeling. I am not expecting sugar and light, and I don't mind hearing about his sadness because I do not think there is a prescribed set amount of time for healing (if that is possible) to take place. In fact, I remember when studying diagnosis and treatment planning at the University, we would always hear about this magic time period when bereavement would subside and healing would begin. The magic number was two years. Maybe there is something to be said about this two year time frame, I can't say at the moment, but I honestly believe parents will always carry the death of a child within them. While Peter and I were having dinner, we were looking over at Roosevelt Island (which was across the way from where we were sitting). Peter pointed for me to look, and what we noticed was a deer came from the island into the water to cool down. It was an amazing sight, and a rare sight. While eating, mallard ducks came up to us, and birds were flying overhead. Not to mention air traffic overhead as planes were making their final approach to Reagan National Airport. Needless to say these would have been sights that would have given great joy to Mattie! As I was eating, I could see parents with their children in tow, and all I could think was why me/Peter? Why Mattie?

As promised, I have attached some more pictures with the Mattie Miracle Pediatric Cancer Walk. I have plenty of them to share and I hope you enjoy these!

Left: Peter giving his greeting to all attendees on behalf of the Foundation.
Right: After I said a few words, I then introduced Sean Swarner. Before Sean started talking, he gave me a hug. Sean is a very sensitive and compassionate individual, and this comes shining through in his presentations and how he interacts with people.



Left: Sean delivering his message of HOPE!
Right: Some of my readers may recall me mentioning Mary and Mike. They live near Ann, and are RCC parents. Mary took her daughters around town to post up flyers about the Mattie Miracle Walk. You may recall that Emily always refers to Mattie as "her friend," even though they did not know each other that well. Any case, Jeff (our friend and photographer!) captured Mary and her family. Pictured from left to right are Emily, Abby, Mary, and Mike.


Left: People of all ages participated in this year's Walk. I love the picture of the strollers! Pictured here are two RCC moms, whose children went to preschool with Mattie. From left to right are Grace, Jane, and two of Peter's colleagues from Arthur Andersen, John and Bill. 





Charlie sent me this article today in light of what I had discussed in the blog on Sunday. I am posting it here in case you are interested in reading it!

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Scientists prove even the thought of money spoils enjoyment

(PhysOrg.com) -- The idea that money does not buy happiness has been around for centuries, but now scientists have proven for the first time that even the thought of money reduces satisfaction in the simple pleasures of life.

In the study led by Jordi Quoidbach of the University of Liege in Belgium, over 350 adult volunteers were recruited. The subjects were university workers with jobs ranging from cleaners to senior positions. They were given questionnaires asking them about how much they earned, how much they saved, their attitudes to money, and measuring their savoring ability. Savoring is feeling positive emotions such as contentment, gratitude, joy, awe or excitement during an experience. The results showed that the subjects who were wealthier had a self-assessed lower level of savoring ability, and this undermined the positive effects of money on their happiness, although they were overall slightly happier than the less well-off subjects. The volunteers were then randomly assigned into one of two groups. The subjects in one group were shown a picture of a stack of money as a reminder of wealth, while the second group were shown the same picture but blurred beyond recognition. After being shown the picture the subjects were given further psychological questionnaires designed to measure their ability to savor pleasant experiences. The results were that if the subjects were shown the clear picture of money first they scored lower in their ability to savor experiences. In a second test 40 students were given a binder that included a questionnaire asking them about their attitudes to chocolate. The binder also contained a photograph, marked as being part of an unrelated study, of a stack of money or a neutral object. They were then given a piece of chocolate to eat. Two observers, who had no knowledge of which picture the subject had viewed, used stopwatches to time how long the subject savored the chocolate, and gave them a rating on how much they appeared to be enjoying the chocolate. The results were that subjects who had viewed the picture of money spent an average of 32 seconds savoring the chocolate, while those who had viewed the neutral picture spent 45 seconds on average and appeared to derive more enjoyment from it. The conclusion the authors reached was that access to money undermines a person’s ability to savor the simple pleasures of life, and even looking at a photograph reminding them of wealth could reduce their satisfaction levels. The study adds to other research in psychology looking at why, once people have enough to cover their basic needs, having more money has little effect on the enjoyment of life.

The paper is published in the Psychological Science journal.
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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for the picture of Mattie in his Rolling Thunder wheelchair. I know Mattie was "into" military things and I like to think he is riding as "wingman" to one of my friends on this holiday. I know he would love it and I can see him now on a RED motorcycle joining in spirit with those who rode in physically to honor our fallen. Thank you for providing the history of Memorial Day for your blog readers. Many Americans who have no military connections don't understand the difference between Memorial Day and Veterans Day and believe they are interchangeable. It was quite the day to be out for a walk on city sidewalks and I am not surprised you and Peter were wiped out by the experience. Try to find something to do today that will nourish your spirit. As this day after Memorial Day is another Tuesday, I hold you and Peter gently in my heart and in my thoughts."

May 31, 2010

Monady, May 31, 2010

Monday, May 31, 2010

Tonight's pictures were taken last Memorial Day! We were all in the hospital while Mattie was receiving his treatment. In fact, we spent more days and holidays in the hospital from 2008 to 2009, than we did in our own home. Mattie received a wonderful Memorial Day care package last year from Tamra's family. Mattie loved all the flags, the streamers, pinwheels, and the bandana. In fact, Mattie decided to take all these decorations and turn his wheelchair into his own version of Rolling Thunder. In light of the fact that today is Memorial Day, I wanted to share these pictures with you as we remember all those who have died while fighting and protecting our Nation. 

Poem of the day: Free At Last by Brenda Penepent

I want to play and soar and dream.
Fly above the fields until I am free.
No pain, no sorrow and no fear,
Can touch me now that I am here.
Breathe in the breeze and feel the sun,
Across my face, I run and run!!!
I play and laugh among the trees.
Alive! Alive! I breathe! I breathe!
With legs so strong, I run so fast;
The world just smiles as I go past.
Sweet laughter bubbles up inside,
For freedom long denied, denied.
No tears, no pain, remembered here,
I’ve been released from all my fears,
To run and laugh until the day
When all bad things have passed away.

We hope all our readers had a happy Memorial Day. In honor of the day, I will share a bit of history with you. Memorial Day, originally called Decoration Day, is a day of remembrance for those who have died in our nation's service. Memorial Day was officially proclaimed on May 5, 1868 by General John Logan, national commander of the Grand Army of the Republic, in his General Order No. 11, and was first observed on May 30, 1868, when flowers were placed on the graves of Union and Confederate soldiers at Arlington National Cemetery. The first state to officially recognize the holiday was New York in 1873. By 1890 it was recognized by all of the northern states. The South refused to acknowledge the day, honoring their dead on separate days until after World War I (when the holiday changed from honoring just those who died fighting in the Civil War to honoring Americans who died fighting in any war). It is now celebrated in almost every State on the last Monday in May (passed by Congress with the National Holiday Act of 1971 (P.L. 90 - 363) to ensure a three day weekend for Federal holidays), though several southern states have an additional separate day for honoring the Confederate war dead: January 19 in Texas, April 26 in Alabama, Florida, Georgia, and Mississippi; May 10 in South Carolina; and June 3 (Jefferson Davis' birthday) in Louisiana and Tennessee.

I am not sure why a holiday like Memorial Day would prove to be so difficult for Peter and I. But it was! We associate holiday times with family, and yet the main component of our family is now gone. So while I know others are out with their children, Peter and I are in a quandry about how to spend our days. We did not venture far today, and even though it was in the 90s with intense humidity, Peter and I decided to take a walk to Georgetown. In hopes that it would change our mood. I am not sure it accomplished that, but we did come back home more exhausted and wiped out from the heat. Later on in the day, we started digging out from the Walk, and putting together donor acknowledgement letters. I realize I haven't shared Walk pictures with you for two days. Not worry, more are coming your way this week!

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie, Charlie wrote, "Nature is such an important part of our lives but we often overlook it. Studies show that blood pressure and pulse go down when people step out into a garden or wooded area and the more there are nature sounds around them, such as birdsong, the stronger the positive reaction. Unfortunately, we surround ourselves in ways that keep us from being out in nature and we allow our technology and machines to invade our natural spaces. Keeping one's own garden is a good substitute for getting to be out and about in a natural setting and I am glad you are doing this for your physical, emotional and mental health. I was out digging in my own garden today and with each butterfly I thought of Mattie's spirit flying free. I absolutely agree with you that happiness is not about possessions beyond the basics needed for life, the healthiest and happiest people are those with the strongest social connections and those who consistently find a way to do for and care for others. As I remember my fallen comrades today and those, including Mattie, that I've lost to other things as well, I say the kaddish in honor of all their memories. May all of us be a force for Tikkun Olam (healing the world) this Memorial Day. I hold you gently in my thoughts."

The second message is from my friend and colleague, Denise. Denise wrote, "I just finished reading the blog this morning and loved reading about how you and Peter are enjoying nature and how it supports you in connecting with Mattie. The plants on your deck look lovely and it sounds like they bring beauty, solace and hope to both of you. In the last 2 years, both my father and Dave's mother died and we plant flowers and plants in honor of them. Dave's father died in 1996 and we planted a magnolia tree in his memory in 1999 and it blossoms each May (his birthday month). I have to admit I talk to that tree and the flowers and plants!! Keeps me connected to them. Last Sunday during the walk, Marisa and I were texting back and forth, especially concerned about the weather. At about 12:50 pm, out came the sun and I told Marisa to look up to the sky because I was sure we would see Mattie's smiling face shining down on us. The connection to nature, which is spiritual, is so very powerful in supporting us in grief and loss. Allow it to take you where it takes you. And always remember, there are many loving arms around you and when you lean into them for support, whether literally or figuratively, they are there for you. Enjoy the sunshine today, feel the warmth and gather strength from it."


The third message is from my friend and colleague, Nancy. Nancy wrote, "Yesterday's blog evoked so many thoughts, as usual. First of all, Marv and I went shopping for plants for our terrace. We love the fresh plants, yet, have a challenge, not much sun. So we bought lots of impatiens, a peace plant, and a splath bush. The Splath bush will present the greatest challenge as we're not sure we have the sunlight to sustain it. Much like life, the plants need care and nuturing. We'll try our best as you did these last few years. I, too, find nature more fascinating as I age. It is humbling to be another creation who came after the trees, the mountains, water. They are majestic and we are just humans, imperfect and vulnerable. Of course, some might say that this is true of our natural resources now that man has tampered with them. On another note, I loved the pictures of your plants. They seem to be a metaphor for your living life, although, Mattie has had to return to Heaven. Through Peter and your efforts, he will live on forever in all of our hearts. I love Peter's picture of the spider web. It is beautiful! Your visit with Ann's family sounds like it was full of warmth and good sharing. I'm glad that you were able to share so much with Margaret. It helps when we are most unsure to hear from another, especially a stranger, that our values and beliefs are resonating with the universe.. Special connections are wonderful as they are like your Monarch Butterfly, here for a moment, yet, lasts a lifetime. Once again, you have created a vivid image of a DC happening. Rolling Thunder is magnificent as I had the pleasure of witnessing it,11 years ago with 3 very close friends. We were spending Memorial Day in DC and staying with our friend's parents. She told us of the Vets and Bikers and we drove into the city to see it. It was amazing! Today is our day to focus on all that others do to protect us and attempt to keep our country safe. We are off to be with friends and wish you a blessed day."

Sunday, May 30, 2010

Sunday, May 30, 2010

Tonight's picture was taken in October of 2008. You really have to love this picture, because it clearly illustrates the fun Mattie generated in the PICU. As you can see, Mattie's right arm was in a sling, because he had surgery on it. In addition, he is clearly hooked up to the IV pump. Yet in his left hand he was holding a water gun, and aiming it directly at Anna, his physical therapist. Anna was holding up a towel to protect herself, because Mattie was soaking her from head to toe. The laughter in the room was memorable, the energy Mattie could produce was contagious, and in essence each one of these adventures strengthened the bond of love between us and the Georgetown University Hospital staff.

Poem of the day: Life Is So Fleeting by Brenda Penepent
Life is so fleeting
And death, so imminent
How can we face this
Challenge alone.
A prayer whispered softly,
“God, please won’t You help me,
Keep my head up
When I’m drowning in pain.”
Hold my hand, please, Lord.
I feel so alone now.
The wall seems so high,
I can’t climb across.
A bird at my window
Sings a song to remind me
That God is listening
And hope is not lost.
So I’ll hold on one more day;
Sometimes just one hour.
I’ll tell myself God cares,
And I’m not alone.

Peter and I began our day by receiving beautifully wrapped mini muffin loaves from our friend Tamra. Tamra wanted us to know she was thinking about us on this holiday weekend. Which indeed made us feel special. In fact, I told Tamra that I recall her visiting us last Memorial day in the hospital. She gave Mattie some lovely and festive flags, and I will try to track down the picture and post it tomorrow night of  Mattie last Memorial day after he decorated his wheelchair like Rolling Thunder. For those of you who may not be familiar with Rolling Thunder, I can honestly tell you if you live in Washington, DC, Rolling Thunder leaves a lasting impression on you. Specifically, "Rolling Thunder began in 1987 as a demonstration to bring awareness to the plight of prisoners of war (POW) and to those missing in action (MIA). Rolling Thunder originated when four Vietnam Veterans, exercising the First Amendment "Right to Petition and Assemble," organized the first group of 2500 motorcycles to ride through the streets of Washington, DC. This first Rolling Thunder run was made in an attempt to petition the government to take responsibility for the soldiers that were abandoned after the Vietnam War ended. Today over 250,000 motorcycles ride during the Rolling Thunder Memorial Day weekend observance, held each year in our nation’s capital. Rolling Thunder has evolved to be not only a demonstration for the POW/MIA issue but also a demonstration of patriotism and respect for soldiers and veterans from all wars."

Peter and I had a chance to sit outside on our deck today. We were admiring how things around us are growing leaps and bounds. Peter snapped some pictures of our tomato plants and our Meyer Lemon tree. This lemon tree was sent to me by my sister in law in 2007, for my birthday. It came in the mail as a little sapling. Yet if you look at it today, it is hard to believe it is the same tree. It is robust and producing a vast number of lemon blossoms. The fragrance is intoxicating! In a way, despite living in the heart of the city, we are growing tomatoes, basil, mint, oregano, sage, arugula, green bush beans, and lemons! Somehow with Mattie's death, we both have this great need to turn to nature. We always appreciated plants before, but now it seems to ground us. In the midst of sitting outside, I saw a rare sighting. A monarch butterfly flew right toward me, and then circled around Speedy Red. We have lived in our complex for 15 years, and I can't recall ever seeing a monarch butterfly. I pointed this out to Peter, but then did not say anything else. I felt as if this was a sign from Mattie. Mattie was checking in on us, and unfortunately as quickly as it fluttered into our lives, it fluttered back out just as quickly.
 
I am sharing three pictures with you tonight from our garden. The picture on the left, you can see my petunias growing, but particularly what you should notice is how tall our tomato plant is getting. When we bought it, it was less than a foot tall. The picture on the right shows the beautiful lemon blossoms which fill our deck with an amazing fragrance.


 
















Left: Peter captured a very interesting finding within our lemon tree. A spider has built an extensive web right inside the tree. Mattie would have found this very exciting to watch, so in honor of Mattie, Peter snapped a picture.




This afternoon, Peter and I went to Ann's house. Ann has two of her cousins visiting and Mary (Ann's mom) was also over for dinner. One of Ann's cousins, Margaret, in 80 years old, however, when you look at her and talk with her, you wouldn't guess she is that old. She has a lot of life to her, and honestly she makes 80 look easy, which I of course know it is NOT! Margaret and I had a wonderful conversation together after dinner. Margaret was telling me about a book she read that was written by a medical doctor. In essence the premise of the book is that the doctor learned that true happiness and fulfillment in life isn't gained through material possessions. I explained to Margaret that I believe wholeheartedly in this doctor's philosophy, and I told her since I experienced Mattie's cancer and death, that I have learned that at the end of the day material things don't matter. What matters is the connections you have made with people. Margaret and I both live our lives helping others, and we found that we had this in common. We talked about friendships and how some times friendships can be one sided or even conditional. Therefore, we both agreed that when you find a friend where the level of care and concern is mutual, that is a true blessing. It is a very powerful force to have an unconditional friendship and I was happy Margaret and I could discuss this and she could share her years of wisdom with me.

We all had a wonderful dinner together. I had the treat of having sangria tonight. I recall my Dad making sangria for family parties when I was growing up. I was too young to drink it, but the process fascinated me and I particularly loved the fragrance of all the fresh citrus fruits in the drink. Funny how certain things can jog your memory. So to me, having sangria was special and Ann also had olives and apple pie for dessert. Two of my favorite things.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "As I said before, I am not surprised by the "letdown" after the walk. It took so much of your time and energy but it gave you a focus for your emotions and now that it is completed, you are without a place to direct your energies. The only solution for that is to sit with your feelings, acknowledge them and not judge them and then decide what you want to do next. I don't know for certain why you were focused on the memory of managing Mattie's pain but often emotional pain is reflected in physical pain and perhaps your own grief found a "physical outlet" in remembering what Mattie suffered. You did so much for him, managed his pain, his life, his well being, and now you need a replacement focus for your energies. I hope you find something that will challenge you and use your wonderful people skills. As I honor my fallen friends this weekend, warriors all, I will add a prayer for Mattie and all the other children who also fought and died courageously; they too are warriors. I hold you gently in my thoughts."

The second message is from my friend and colleague, Denise. Denise wrote, "I was so very disappointed that I was unable to attend the walk last week. However, Marisa, Dave and Brian shared their wonderful experiences with me and of course I follow the blog and have enjoyed the pictures. I also had the opportunity to see Peter's TV interview on Sunday morning-he did a fantastic job. He was articulate, knowledgeable and genuine. The work you have both done with the MMCF is awe-inspiring. And it makes complete sense that you are having a bit of a let-down experience right now. It is our body's way of renewing and rejuvenating itself so that you have energy for the next set of tasks ahead!! On another note, I met with Rebecca Dedmond and a doctoral student and the president of CSI-whose first name is Elise-and was at the walk. I am going to do a workshop for them on "Caring for the Caregiver"-self-care for the therapist. Anyway, I was explaining my involvement with GWU to Elise and of course your name came up as part of my discussion. I shared with her how I enjoyed speaking in your classes and the energy in your classes. I shared with them my very visual memory of your students gathered around you with questions and reflections and how you interacted with each one. As an educator and as Mattie's mother, you have touched far more people than you will ever know. You are in my thoughts and heart often and I wish you comfort and strength. Do what you can each day, pay attention to your body and rest. Hopefully, we can schedule that lunch date when you are ready."
 
The third message is from my friend and colleague, Nancy. Nancy wrote, "I imagine it is hot in DC as it will be here. I hope that Peter and you will get a chance to take a stroll on Roosevelt Island or someplace near the water. Whatever you do this weekend, please let yourself have some down time. Thank you for printing Christine's comments and sending my email to her. It reminds me of something that Jon Bon Jovi said last night at his Concert. We all need each other now! How true. As we've discussed, if people could only trust and help each other, we would achieve 'tikun olam.' In Judaism, this means heal the world. Globally, we don't see the media covering the work of many as this doesn't make news. That is what made Fox 5's coverage very special with their reports. They are a great ally for the Foundation. I continue to enjoy the pictures and identifications from the walk and especially your introductions as they enhance my understanding and appreciation for your tremendous heart. I am so glad that you were able to clean up your closets. This is another way that you can process your grief, one day at a time. You are beginning with the things that you can put away. You are noticing and responding to the chaos that your life became during Mattie's illness and death. The Walk and all of its preparation kept you focused and connected to Mattie. It is so natural a response that you are tired and without a purpose, for now. As you replenish your energy by taking time for yourself and attending to all of your mundance acts of life, you will find ways to attend to your clutters. Keeping up with the blog and gently returning to everyday activities does take a lot of energy. You will do it in your own time."