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."

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."

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."

Saturday, May 29, 2010

Saturday, May 29, 2010

Tonight's picture was taken in September of 2008. This was before Mattie had any of his surgeries, and was still able to move around and walk independently. I was playing music off of my laptop computer and Mattie was thoroughly enjoying dancing to the tunes. Clearly being attached to an IV pump did not slow him down! Also notice in the background were several cardboard boxes near the door. Mattie trained the Georgetown Staff early on that all packing boxes should not be thrown away, but instead used to develop a Mattie creation! 


Poem of the day: The Words of a Child by Charlie Brown

The words of a child speak wisdom
For in his heart is truth
He knows the meaning of friendship
In a way that adults have lost
Willing to admit to love
Not worrying about the words
Holding on to the feelings
Knowing death is not the end
So when you have the chance
To attend to the words of a child
Don't dismiss them for their simplicity
But embrace them for their truth.


As is typical with my delayed reaction to things, I am now feeling the after math of having the Walk behind me. Planning the Walk kept me extremely busy, interacting with people, and focused on a goal and objective. With that behind me, I find that I am exhausted and also experiencing grief on a grander scale. For some reason today, I had flashbacks of Mattie experiencing pain, and how Peter and I had to manage this pain with pain pumps attached to Mattie at home. I am not sure why my mind wondered there, but it did.

I spent the entire day doing chores, from laundry to cleaning out one of my closets. When Mattie was diagnosed with cancer and beyond, I let things around me just pile up. My closets are jammed packed with things, and my clothes closets, which used to be so organized, were in shambles. So much so that for almost two years now, my clothes have been stacked all around me. Though Mattie has been gone for 8 months, I hadn't addressed this problem until today. I spent hours on this one project, and though my clothes are back within a closet, there is still so much around me that needs to be organized. But I can only take on one project at a time.

I would like to share five pictures with you tonight that were taken by Jeff, Charlotte's Dad. Jeff was our official Walk photographer and he captured the posters (which were 2 feet by 3 feet in size) which Peter and I developed and were placed around the track. So while walkers were doing their laps, they got to read about our Foundation's goals in a very simplified format. Notice the adorable photos in the "C" track poster. These four children, Mattie being included, ALL died from osteosarcoma in 2009! Sammie, Emma, Keaton, and Mattie suffered tremendously, and now all these families are left with the aftermath of losing a child to cancer.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for continuing to share the pictures of the walk with us. As you said the energy level of the attendees, particularly the children comes through very well. I agree with Nancy and Christine that you listen better to children than virtually anyone else I know. That is demonstrated quite clearly by the reactions of the children who choose to share their feelings and confidences with you. True listening honors the teller and the listener; we rarely give or get that gift in our lives as adults and even less so as children since adults tend to dismiss or only half listen to what children say. What we often fail to see is what a gift we are given in return when we take the time to really listen, and not work to prepare our response or our own sharing, but just listening, accepting the words, the feelings and the intentions of the "teller." May this gift never leave you, and thank you for sharing it with us. I hold you gently in my thoughts."

Friday, May 28, 2010

Friday, May 28, 2010

Tonight's picture was taken in September of 2008. Mattie was in his second month of receiving chemotherapy. In the picture, you can see that Mattie is in his PICU bed and his buddy Charlotte, jumped in next to him. Most likely they were watching a Scooby Doo video, while Tricia (one of Mattie's unforgettable HEM/ONC nurses) was flushing Mattie's lines. The PICU environment is hard enough to handle as an adult, so I can only imagine what it must have been like for Charlotte and Mattie's other friends who visited often. I am very grateful that Mattie had friends that came to visit  because the sheer isolation of living in a hospital is hard to endure. My gratitude for these special moments, and special friendships, are quite deep and quite sincere.


Poem of the day: The Tree by Charlie Brown


As we stood in the grass yesterday
We remembered the day you went away
It brought a tear to each one's eyes
As we heard the words and looked to the skies
We remembered how you would laugh and play
And how hard you fought for the right to stay
So we planted a tree in memory of you
An oak tree, standing proud and true
It's here on the grounds of the school you loved
And we hope you can see it from up above.
Your tree standing strong and tall
Shading your friends one and all


I posted four more pictures from the Walk for you to view tonight. I have so many wonderful pictures that were sent to me, and over time I hope to be able to share many of them with you. I tried to capture the crowd and the energy at the Walk.

Left: The crowd assembling in the stands for a group picture and then the commencement of the ceremony.

Right: The Walk beginning.

Left: In this picture is my mom and Karen, along with Tricia (an outstanding HEM/ONC nurse) and Doris (Doris is wearing a shirt with the number 16 on it). Doris is a cancer survivor, and the mother of one of my very talented former students, Theresa. I was so honored to meet Doris, and even more honored that she attended our Walk. Doris joined forces with my mom and Karen, and the three of them walked in unity for Mattie and pediatric cancer.

Right: I love this picture! Mainly because it captures the excitement the children felt! The lead runner is Campbell, Mattie's good buddy from kindergarten.

This evening, Peter and I had the opportunity to go out to dinner with Ann and Dr. Bob. After dinner, we saw a play together entitled, Around the world in 80 days. We actually won these play tickets at the Resurrection Children's Center auction this year. I remember that auction night quite well, and I wasn't even thinking of bidding on these tickets until Ann showed them to me. I am actually happy we won these tickets because it introduced me to a theatre I had never been to in Bethesda, MD.

When growing up, I distinctly remember my grandmother singing the song entitled, Around the world in 80 days. However, I never read the book by Jules Verne or saw the movie. So I truly did not know what the play was about. Nonetheless, I must confess I had this notion that a hot air balloon was involved in the voyage. When I got home tonight, I read the playwright's notes, and he answered my questions. Mark Brown wrote, "There's no balloon! First and foremost. I'm sorry to burst your bubble, but there's no balloon. I can not stress this enough. I've said this from the very first day when several of my friends and I sat around discussing one of our favorite subjects - what novels would make good stage adaptations - and Around the world in 80 days came up. Someone said, It'll be great. We'll follow the balloon from country to country. I piped in with, There's no balloon. I hadn't even read the novel but somehow I knew there wasn't a balloon in it. It's the curse of the movie, really. The first one. The one with David Niven. It won five Academy Awards. The film had a balloon. It's what everyone remembers. But there's no balloon in the book and there's no balloon in this show." Jules Verne's inspiration for Around the world in 80 days was most likely George Francis Train, who in 1870 traveled around the world in 67 or 80 days.

The beauty of this play is it stars ONLY four actors and one actress. Yet these 5 individuals play over 39 different parts. It is almost hilarious to watch their costume changes and hear their different accents. It is indeed a comedy, however, it is a play with a moral message at the end. The lead character, Phileas Fogg, is a proper English man, who one night while at his men's club, wagers a bet with three other men that he can traverse the world in only 80 days. Throughout the play you see that Phileas is a man of precision, mathematics, and logic and reasoning. Emotions do not necessarily influence his decisions. Along his journey he meets a woman who he saves from being sacrificed by a tribe in India. This woman is indebted to Phileas and feels a special connection to him. However, Phileas tells her it was his "duty" to save her and he also had the "time." He was ahead of schedule along his voyage and he made his rescue of her some trite. However, in the end, Phileas learns that whether he wins the bet or not, his greatest accomplishment was he found love. The love of a woman. There was a lot of sighs and ohs and ahs in the audience over this conclusion. It may sound sappy I suppose, but the reality of the message is indeed very powerful. Without love, you have nothing. 

I would like to end tonight's posting with four messages. Typically I do not forward messages I receive from one friend to another. But my friend Nancy's message was so meaningful today, I forwarded it to Christine, Campbell's mom. Below you will see Nancy's message, and Christine's response to Nancy's message. I wanted to share it with all of you tonight, because the essence of Mattie truly affects so many of us, and despite our geographic distance from one another, these stories unite us, as it did for Nancy (who lives in NY), and Christine (who lives in Northern VA).

The first message is from my friend, Charlie. Charlie wrote, "Thank you for the continuing information about Sunday's walk. Your words and pictures help bring it to life for those of us who unfortunately could not be there. It seems as though all the children had a really wonderful day and that Mattie was remembered the way he would have wanted; with his friends enjoying all sorts of events he too would have loved to participate in. The tree planting was beautiful and the pictures are very special. I can tell that Mattie's friends will remember him as they pass by his tree or have the opportunity to sit under it and enjoy it's shade as they play. What a beautiful tribute to your boy. As I practice today I will work to help you find the energy to keep moving in a positive direction. I hold you gently in my thoughts."

The second message is from our friend, Danelle. Danelle wrote, "I wanted to tell you one other reason why an oak was such a great choice for Mattie’s tree. A friend of mine had the City of Alexandria arborist come out to her house (just up the street from me) and check out some of her trees. He told her that he is concerned because so many of the oaks in this neighborhood (basically the same neighborhood that SSSAS is in) are near the end of their lives and people are not replacing them with new oaks when they come down. They are choosing faster growing trees, or other trees for other reasons. He said over time, the oaks will all be replaced at this rate. I am so glad that Mattie’s tree is one that will help reverse this process. It seems fitting."

The third message is from my friend and colleague, Nancy. Nancy wrote, "I find myself reading the blog with a renewed energy. The poetry, the pictures from the walk, the explanations of all that went on that day filled my heart with HOPE for all of you. I was enchanted by Campbell's conversation with you. Oh, if we mere adults, could listen to our children as beautifully as you listened to Campbell, I don't think we would be facing all these horrible political and war agendas in the world. Children are our future and often they have answers on how to treat others. Campbell clearly loved Mattie and thinks of him, intensified, by the tree ceremony. What a leap he made to find the other tree! He is having an opportunity to see death as a happening and maybe not be as afraid to feel his feelings around the loss of his friend. It is a tribute to Mattie and all his wonderful energy as he endured so many painful days in a giving way. This reminds me of a recent reading about the way that terminal children often respond to their imminent death. They appear to be better able to go in peace than their 'older and more experienced' adult family. I think passing the HOPE necklace on is a fitting way to extend the message of the foundation. You are providing hope to families and the children facing this disease! If you decide to keep it, I believe it is still an important symbol of your hope with the Foundation. Either way, you will make a good decision. I trust that. Finally, I am not surprised that you've received so many messages from parents whose children attended. Although the walk was 'in memory' of Mattie, it gave the children a venue where they could be together with Mattie and others involved in the healing process. It gave them a safe place to learn from grieving and as we know children learn best from play and good vibrations in their universe. A brief digression about the initial picture of Mattie, you , and the PICU day. Dancing Queen is a personal favorite too and I had the best mental image of the people on the floor enjoying this upbeat sound. Like laughter, music gets to the soul easily and quickly. So much still left to learn and teach others about the grieving process and the living process. I end with a reminder of a wonderful quote that sits on our computer desk at home:"ENJOY LIFE - this is not a dress rehearsal. I wish you a peaceful and gentle weekend."

The fourth message is from my friend, Christine. Christine wrote, "I read your blog entry yesterday. I didn't know that Campbell found the other tree memorial. I feel choked up right now and am not sure why. I think it is the fact that, as Nancy pointed out, you really take the time to listen to children. It's not always easy to stop engaging with adults to have a meaningful conversation with a child. You never have a problem doing that. It reminds me of your skills as a parent and educator. I hope that you will always stay connected in some way to Campbell. I know that he feels a connection to you. By the way, the ceremony yesterday was very meaningful. Mattie's oak tree is really beautiful."