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

September 17, 2011

Saturday, September 17, 2011

Saturday, September 17, 2011

In September of 2008, Peter's company had an office in Peru. That office sent us a beautiful song entitled, My Little Child. The song was written by several of the Peru folks and recorded by them as well. The proceeds from the sales of the song, went to Mattie. When Mattie heard the song, he got up in his hospital room and started to dance. To me this was a precious sight, and also showed Mattie's love for music. Despite being attached to a huge IV pole and not feeling well, the song inspired him to move. Also you may notice that behind Mattie were a stack of boxes. This was how Mattie began many of his hospital admissions. With packing boxes his hospital family accumulated for him, and over the course of his hospitalization he would transform each and every box in amazing ways.  

Childhood Cancer Fact of the Day: When a child is diagnosed with cancer, everyone in the family is affected (Children's Cancer Foundation).

My mom and I went to the LA County Museum of Art today. As we left her home and were driving down the street, we saw this charming sight. A mother deer with her baby in tow. You should note that I started my day with this sight, and at dusk when we returned home, mom and baby came back out to greet us. Mattie would have absolutely loved this sighting today and whenever he saw a baby animal with its mom, it reminded him of me and him.

The exhibit we went to see at the museum was entitled, Tim Burton. Tim Burton was born in Burbank in 1958. After studying at the California Institute of the Arts (CalArts), he worked as an animator at the Walt Disney Studios before breaking out on his own. Taking inspiration from popular culture, fairy tales and traditions of the gothic, Burton has reinvented Hollywood genre filmmaking as an expression of a personal vision. The exhibition brings together over 700 drawings, paintings, photographs, moving-image works, storyboards, puppets, concept artworks, maquettes, costumes, and cinematic ephemera, including art from a number of unrealized and little-known personal projects. In this picture, I am standing next to one of Burton's outdoor artworks entitled, "Balloon Boy."


I have to admit that prior to this exhibit I knew nothing about Burton or his works. I have NEVER seen a Tim Burton movie, and clearly I was in the minority as I attended this exhibit. This was the entrance to the exhibit  which basically gives you a feeling for the avant garde nature of Burton's art. Unfortunately I was not allowed to take photos inside the exhibit, so I will try my best to give you my thoughts on what I was observing.

I honestly believe that art reveals a great deal about a person's feelings, thoughts, and inner turmoils. I frankly did not need to know anything about Burton's life because to me his art alone spoke volumes. From his art and the creation of movie scripts and characters (which I got to see), I quickly concluded that Burton must have had a very troubled and isolating childhood. His art is beyond uncomfortable, it borders on depressing and bleak. For example, one of his characters in the exhibit was a blue baby doll. Typically babies aren't blue, unless they are depleted of oxygen. The doll had nails coming out of his body with red marks around it indicating blood. Burton seems fascinated with horror and the macabre, and particularly with severed body parts. He consistent theme is being misunderstood, under appreciated, and feeling different! What better way does he illustrate this than in a story he wrote which was on display in the exhibit. The story opens up with a happy couple who learns they are expecting a baby. When the baby is born, it isn't human, it is a robot. The father is stunned and asks the doctor what went wrong. The doctor tells him that the mother had an affair with a blender. He proceeds to then go on to let us know that the father then hated the mother and the mother hated the father, and well of course no one loved the baby. Well if that isn't a cry for help and very revealing, God knows what is. I told my mom that Burton was lucky school counseling and therapy weren't popular in his day, because if they were he would have been a major red flag at school.

When I got home I googled Tim Burton because I wanted to know the man behind the artist. Not to my surprise Burton left his parents house at a young age and moved in with his grandmother. He disliked his home town, of Burbank, CA. He felt everyone was a conformist, they didn't appreciate him, and basically he was a loner and a poor student in school. His refuge was the movies. In addition, it is reported that he was a "disruptive" child. The biography goes on to say that the character, Edward Scissorhands, was really created with Burton in mind. Both were boys who were different and forced to live in suburbia where they were not understood, and almost deemed frightening by others. All I can say is I am happy Burton found a passion and outlet for all his feelings and turned to art. Because the alternative for our society would have been daunting.

I watched several of his short video clips in the exhibit and each of his cartoon characters had a horrific side. In one clip, one character hits another, and blood spews out in buckets from the other character's body. The children in attendance were laughing and thought that this was cool. As I observed this I wasn't sure what shocked me more, the cartoon or the children's reactions.

As we left the exhibit, we were greeted with these moving characters. Burton loves stripes and outer space looking creatures.

Here was an example of an Outdoor Topiary from the movie Edward Scissorhands. The topiary was made out of rubber piping. The kids in attendance were loving it and running through it like a maze.

My mom and I then attended an exhibit entitled Burton Selects. Here the filmmaker filled a gallery with works of his choosing from the museum's permanent collection. This particular print caught our attention. It is entitled, The Eye, Like a Strange Balloon, Mounts toward Infinity (Odilon Redon, 1882). I am posting a few to give you a feeling for the art work that captures Burton's attention and imagination.

This next piece is entitled, In Search of Times Past (Herbert Bayer, 1959). To me this gives a birch tree a whole new meaning! I may never look at the bark again without seeing eyes! 

This piece is Untitled (Gyorgy Kepes, 1940). To me the picture reminds me of Picasso's cubism style, because we can see a child, a younger man, and an older man all depicted at one point in time in this print.
If you would like to see more of Tim Burton's art work, I invite you to click on his interactive gallery. You won't only get to observe his art, you will get a sense for Burton's style and creativity: http://www.timburton.com/

Here are some tell tale signs or trademarks of Burton's works. I think they are all very revealing about his own personal life and how his life has been integrated into his art.

1) His films often have a Gothic feel to them, often including Christmas and/or Halloween scenes. Plot often focuses around a misunderstood outcast.
2) Frequently features dead or dismembered dogs.
3) Many of his films feature townspeople who misunderstand and/or distrust the lead character. Fathers are portrayed in a negative light in his films. Whether they be dead, purposely ditched their children, the main characters have remorse against them because of bad childhood memories or weren't there while their child was growing up.

4) Affectionate homages to the films of his childhood.

5) His characters are often friendly and optimistic despite their bleak surroundings.

September 16, 2011

Friday, September 16, 2011

Friday, September 16, 2011

Tonight's picture was taken in September of 2008 in Mattie's hospital room. In all the PICU rooms, there was a window in the room that looked into the hallway of the unit. That particular afternoon, Mattie did not feel like leaving his room. But that did not mean Mattie wasn't up to his own antics. He had me blow up several rubber gloves to create turkey balloons. He then stood by the window, and when unsuspecting doctors and nurses walked by he would bang on the window and flash his turkey balloons. He frightened some people because they weren't expecting him standing there, and he made some others laugh. Either case, it made Mattie smile, laugh, and feel energized. Mattie and I were trapped most of our days inside a room that reminded me of a walk in closet. It was small, without much natural light, and of course at times depressing and isolating. Therefore, Mattie's antics, from my perspective, were not only a good thing, but a healthy diversion to our horrific existence.

Childhood Cancer Fact of the Day: Eighty percent of children have cancer that has spread to more than one location at the time of diagnosis (Cancer.Net).

I had a bad night of sleep and was restless. In between waking up, I had a very vivid dream. As my faithful readers know, I do not have many Mattie dreams. So when I do, they are significant to me. Last night I had a very vivid dream, so vivid, that I woke up disturbed. Because in my dream I could feel my own emotions and that of others around me.

In my dream, Mattie finds me and tells me he is alive. When I see him, he looks, happy, healthy, and with no signs of cancer. He wasn't a toddler, he was seven years old (naturally I don't know what Mattie truly looks like healthy at age 7, since when he was 7 his body was ravaged by cancer). In the dream I vividly remember going down an escalator with Mattie to enter one of our DC metro stations. We were trying to get on a train to get to a Bingo game on time. Of course that makes no sense, but this is a dream. As the day progresses in my dream, I learn that Mattie was returned to me in exchange for one of my friends (who is a cancer survive) developing cancer again and dying. I could feel myself being elated that Mattie was alive and yet devastated that my friend had to die and her son was going to be raised without her. In the dream, I could see all of us crying over the loss of my friend and then being faced with the decision..... do I keep Mattie or save my friend?

I woke up perplexed. What kind of nightmare was this? I felt as if I was back in graduate school learning about Kohlberg's stages of moral development and I was thrown such a horrible ethical dilemma to see how I would justify it. Needless to say, despite the content of the dream, Mattie seemed very much alive and wanted to be back by my side. However, of course when I woke up, he wasn't by my side and there were no traces of him ever being around me. It was only a dream, but a disturbing one, as if I was challenged to make a choice between two people in my life.

So when I woke up, I was in a ticky mood. I still wasn't feeling well and had a migraine headache. I did walk several miles with my mom today and then throughout the day, we saw amazing deer sightings. In total today, I saw over 15 deer in my parent's neighborhood. I don't know, do you think it is a Mattie sign, as if I am getting a message after my horrific dream?


The first Mattie sign I saw this morning was this snail. "Snaily" as Mattie would have called him was sitting on my parent's driveway this morning. It was overcast and cool, and it was perfect snail weather.






Then the deer sightings began. I spotted 10 deer at a neighbor's house. This one was drinking out of the fountain. Remember I live in the heart of Washington, DC. What I see each day are lots of people and traffic. So deer sightings are unique to me, but more importantly they are my connection to nature and remind me of Mattie.

Here is the neighbor's house, with deer on the driveway and walkway. These deer were eating every bush in sight on that property.

At the end of the day, at dusk, we were driving back home. The sun finally came out and so did the deer. These deer are used to people and cars. I put down the car window and aimed my camera. I clearly caught her attention and beautiful face. These "LA Cappuccinos," the name I have given to these deer, are SO different from our Roosevelt Island deer. The LA Cappuccinos are slender, darker in color, have a black tail, and incredibly large ears.

September 15, 2011

Thursday, September 15, 2011

Thursday, September 15, 2011

Tonight's picture was taken in September of 2008 in Mattie's hospital room. Mattie had a special visitor that day, his head of the lower school, Bob Weiman (aka The Magic Man). Bob visited Mattie quite often during his battle and worked closely on teaching Mattie several wonderful magic tricks. Bob learned the art of magic from his father and is a skilled magician in addition to being an educator. In 2008, Bob gave Mattie his own special magic trick bag with his name on it (a bag we still have). With each visit, Mattie's bag grew in size because of the number of tricks Bob added to it. Mattie loved learning magic, and he enjoyed his time with Bob. As Mattie became ill from his treatments, Mattie would retreat and many times wanted to see or hear from no one. In those moments, we very often pulled out his magic bag and this inspired him to perform a trick which would get all sorts of attention from his nurses and therapists. Positive feedback is very much needed for any child battling cancer. Magic made Mattie forget about his pains and problems temporarily and it gave him a certain level of self confidence and pride. In this picture Mattie was learning a complex trick from Bob. This trick involved the appearance of a fake engagement ring. Though I do not remember the exact nature of the trick, I assure you the trick was impossible to perform and required a certain level of manual dexterity! What I do remember was Mattie understood the trick as soon as it was taught to him and was able to perform it with ease. Bob was impressed with Mattie that day, and even last week when I saw Bob, we chatted about this very day in 2008 when Mattie performed the amazing engagement ring trick. 

Childhood Cancer Fact of the Day: Childhood cancers are more aggressive and behave differently than cancers in adults (Cancer.Net; St. Jude Children's Research Hospital).

I began my day trying to get a hold of my doctor. Being three hours behind her was a challenge, but I was motivated. When she called me on Tuesday, she wanted to prescribe me antibiotics. I said no at the time, but today, I knew she was right and followed up with getting a prescription. Thankfully we live in the world of cell phones and the Internet, in which the transfer of prescriptions is super easy no matter where in the US you are.

I went out to lunch with my parents and during lunch, my dad began talking about his years of work experience, some of the challenges he was faced with at work, and how he handled them over the years. For the most part, as a child and young adult I wasn't tuned in at all with his work demands. I knew what he did and had a feeling for the big picture but not the day to day pressures and the complexities of the people he worked with. I found his stories today just fascinating and also enjoyed hearing the creative ways he worked through many of the issues that arose in his company. We can learn a lot about those we love through the stories they tell. The stories can tell us about their personalities, insights, priorities, and really the code of ethics that regulate one's life. I enjoyed hearing about my dad's personal recollection of his time working and admire his generosity with his skills now to help non-profits grow and be viable.

Sometimes when you look at children, you can see immediately that they remind you of the child's parents or parent. In my case, I am a blend of both of my parents, not unlike Mattie. Though Mattie looked and acted like me, under the surface he was like Peter. As an adult, with all the insights I have from surviving Mattie battle and death, I view the world and those in it with a different lens. I am happy to have this time with my parents and connect with them without being distracted.

We went this afternoon to the Skirball Cultural Center and Museum. I recall taking Mattie to this museum in the summer of 2007, when he saw their amazing Noah's Arc exhibit. I saw very eager children today heading to that exhibit and also playing near the misting fountain outside. Mattie loved that fountain and it is hard to believe all these things still exist and yet Mattie is not with us.


It seems rather coincidental that I would post a picture of Mattie performing magic on the blog (mind you I created the framework for each blog during the two weeks I am in LA while I was home in DC) and at the same time see an exhibit today entitled, Masters of Illusion.
The exhibit spotlighted innovators during magic's "Golden Age" (1875–1948) whose stories have largely been forgotten. Masters of Illusion: Jewish Magicians of the Golden Age is the first museum exhibition to investigate the significant contributions of Jewish magicians to entertainment history and to American and European culture at large.

Through more than 150 treasured artifacts, the exhibition highlights the accomplishments as Alexander Herrmann (1844–1896), Harry Houdini (1874–1926), Albert "The Great Rameses" Marchinski (1876–1930), The Great Leon (1876–1951), Carl Ballantine (1917–2009), and many more leading Jewish magicians of the day.

On view are stunning lithographs, playbills, costumes, stage props, automata, and film and radio clips, many of them from the stunning collections of renowned magicians, magic historians, and descendants of magicians featured in the exhibition. Visitors are invited to marvel at David "Papa" Bamberg's eerie Mephistopheles automaton, a 1901 will signed by Harry Houdini (1874–1926), a billboard-sized Horace Goldin "Tiger God" poster, Alexander Herrmann's own magic wand, and much more.

The museum did not allow me to take photographs of what I was seeing, but I found the exhibit just fascinating. I learned that in the 1500's magic was considered evil and punishable by law, and how magic evolved over time to be a form of entertainment and skill. The way magic shows were advertised on stunning lithographs also captured my attention, and I can only imagine how they were received generations ago. I particularly loved one of the quotes in today's exhibit which read.... The more you watch the less you see. The more you see the less you watch! In a nutshell, the three core skills of any good magician are manual dexterity, audience manipulation, and misdirection. The exhibit was worth seeing and if you want more information about it, visit:

http://www.skirball.org/component/option,com_pressroom/id,277/scope,archive/task,detail/

 
After the exhibit was over, my mom took a photo of my dad and I in the gardens of the museum. A garden which was inhabited by butterflies!

September 14, 2011

Wednesday, September 14, 2011

Wednesday, September 14, 2011

Tonight's picture was taken in September of 2008, in the Lombardi Clinic of Georgetown University Hospital. Mattie was a month into his treatment, so he had already lost all of his hair, but still had complete use of his limbs. This picture was taken before any of his limb salvaging surgeries. As I tell people all the time, Mattie entered the hospital in August of 2008 walking! But after his first limb salvaging surgery in October of 2008, Mattie's physical ability was impaired and certainly by November of 2008 (after his second major limb salvaging surgery), I never saw my son walk independently or run again. I don't say this lightly and I hope you can imagine how devastating and frightening this was for a six year old boy who was unable to move around and be free! The beauty of tonight's picture was it showed the fun, humor, and antics of Mattie. Jenny and Jessie (Mattie's art therapists) found this large box for Mattie, and he decided to transform it into a little house. A house for ONE! Mattie felt that if he was in this house, the nurses and doctors couldn't touch him and he would be safe. Life in the hospital was challenging for Mattie, but having Jenny, Jessie, and Linda (Mattie's childlife specialist) helped tremendously. They embraced Mattie's creativity and Mattie's need to control certain aspects of his life. These professionals are constant reminders to me of the importance of flexibility and openness when working with young patients and their families. When supporting children who have life threatening illnesses, there is NOT a one size fits all strategy that works.

Childhood Cancer Fact of the Day: Approximately 2,300 children with cancer die each year (that’s almost 4 children a day) (CureSearch).

My mom and I walked 3.8 miles this morning around her neighborhood track. We walk and talk about all sorts of things. Today was a beautiful weather day, not a cloud in the sky, and the sun was glorious. My mom, dad, and I spent the rest of the afternoon together having lunch and doing things around town. However, I feel exhausted. I came to California emotionally wiped out and I haven't regained ground yet. My head and eyes feel very tired and I also got a call from my doctor yesterday letting me know I have yet another infection. As I say often, my grief physically manifests itself in my head (with severe daily headaches) and in my bladder.

My friend Charlie sent me the article below yesterday. I appreciate receiving this article because just the title alone makes me want to scream and throttle someone..... "NJ Mother Reportedly Forced to Remove Photos of Deceased Daughter from Cubicle." I invite you to read this article which I found very revealing and interesting.

This NJ mom lost her daughter to cancer. In her office cubicle she posted pictures of her daughter and also had her daughter's ballet slippers on display. Apparently her boss told her that she NOT only had to remove all of her daughter's items, but she was told she could NO longer talk about her dead daughter at work. The boss stated that several of her colleagues were uncomfortable when she talked about her daughter. ARE YOU SERIOUS?!!! Clearly free speech and expression maybe part of the first amendment of the Constitution but in the workplace, the apparently the Constitution is NOT valued or upheld.

The US workplace frowns upon those who are grieving. Employers and colleagues usually give a griever about a week or so of time to heal, but then after that, business as usual is expected. The griever is then forced to live a split life, a life at work in which one is supposed to be happy and "normal," expressing NO signs of sadness, depression, or pain, and then the life outside of work, where true feelings are safe to explore and discuss. The problem with this split life is that it is HIGHLY unnatural. Grief is a part of life, well maybe not the grief of losing a child, but everyone in the workplace can relate to losing a loved one. Asking someone to squelch this important aspect of their life is equivalent in my perspective to asking someone to come to work, and detach one's arm by the front door, and then pick it up on the way home at the end of the day. An arm is typically a vital part of one's life and functioning, and I am pretty sure no employer would ask for one to sever a limb as admission to the office. Well asking someone to enter the workplace each day and NOT talk about a child who died is equivalent and just as barbaric. Our children are a large part of us, they guide our lives, they give us direction, a purpose for the future, and provide us with incredible amounts of love. Grief impacts our physical and mental health and the greatest medicine to heal grief is to give it a voice.

Unfortunately in the law suit, this mother lost her case. However, she is continuing to fight so that grief will be one day addressed and accepted in the workplace. This is a very valuable and noble cause. Most Americans spend more time in the workplace then at home, so if our losses can't be shared and processed with co-workers and friends, then when will this happen? I am sorry if the discussion of grief makes others uncomfortable. I am not only saddened by that notion, but I am very disheartened to know that this mother was not supported in her grief, but instead made to feel like she was the pathological one. Those who are grieving need to talk and to be understood. That is VERY normal and very natural, I would instead challenge those who shy away from such existential discussions to re-evaluate one's self. The problem is NOT with the griever, the problem is with our society. We all will eventually die (it doesn't matter whether you are rich or poor, educated or uneducated, a democrat or a republican, etc), and burying our head in the sand about this notion serves no purpose. Also turning one's back on a fellow colleague during his or her time of emotional need to me is unconscionable. Check out the articles below and come to your own conclusions.

==================================

Cecelia Ingraham, New Jersey Mother, Reportedly Forced To Remove Photos Of Deceased Daughter From Cubicle

Almost two years after her daughter Tatiana's death, Cecelia Ingraham was reportedly forced by her boss to remove photos of her daughter from her cubicle, as well as Tatiana's ballet slippers, Courthouse News Service reported.
Ingraham sued her workplace, Ortho-McNeil, Johnson & Johnson and DeStefanis for discrimination, constructive discharge and intentional infliction of emotional stress.

The publication went on to describe the incident in question:
"He [Ingraham's boss] allegedly told her that several of her co-workers had complained about her tendency to talk about her daughter's death, which made them uncomfortable. And he said she could "no longer speak of her daughter because she is dead" and should act as if her daughter 'did not exist,' the ruling states."
“I was still in shock. Nothing was coming out of my mouth at the time because I was still in shock and I was in disbelief,” Ingraham testified. “And I said to him, I cannot believe that. I says, I don’t see anybody avoiding me. They always come over, they give me my work.”
Afterward, Ingraham left work and didn't come back, according to ABC. A few days later she had to have heart surgery for sudden heart palpitations. Soon after her recovery, Ingraham resigned from the job and entered the lawsuit.

The New Jersey courthouse ruled against Ingraham, however, saying that the defendant did not intentionally inflict emotional stress on the mother.

The reason? According to the presiding judge, Judge Victor Ashrafi, the workplace is too complex to concretely narrow down motives.
"The workplace has too many personal conflicts and too much behavior that might be perceived as uncivil for the courts to be used as the umpire for all but the most extreme workplace disputes."

According to The Daily Mail, Tatiana was diagnosed with acute lymphocytic leukemia in 2003, but fought it into remission. Sadly, two years later the cancer returned, and she eventually died in May of that year.


Another article about this case:
http://jobs.aol.com/articles/2011/09/07/court-rules-boss-can-tell-grieving-mom-to-act-as-if-her-daughter/
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Tuesday, September 13, 2011

Tuesday, September 13, 2011 -- Mattie died 105 weeks ago today.

Tonight's picture was taken in September of 2008 in our home. Mattie was given this hand crafted stuffed animal dog named "Dandy Dog Dakota" from our neighbors. Mattie loved Dandy Dog because he was as big as Mattie and on the bottom of the dog's right cowboy boot was a personal inscription that read, "to the bravest cowboy we know!" This was an inscription that describes Mattie SO well. Dandy Dog remains in Mattie's room and sits on one of the chairs in his room. Almost as if he is waiting for Mattie's arrival back home.  


Childhood Cancer Fact of the Day: Each school day, 46 children are diagnosed with cancer (CureSearch).


I went with my mom today to one of her women's association luncheons. The luncheon was held at a local country club near their former house, or in other words near the house I lived in when I went to high school. Though we weren't members of this club, our closest neighbor was, and when Mattie and I were in town visiting my parents, she always invited us to a family night at the club. Mattie loved this club, because it is located by a lake. The lake is typically filled with ducks, animals that mesmerized Mattie. Mattie spent many hours running around on the putting greens and being by the lake. So returning to the club today was a sad feeling for me, a feeling I couldn't understand at first, because when I entered the main dining room, my eyes started tearing up. I hadn't been back to the club since Mattie died, yet I pictured his presence there.

At the luncheon, I was drinking iced tea, which was served to me in this glass. If you look closely, the glass says, "The Pessimist's Glass." No one else received such as glass. The other glasses had NO inscriptions on them. Seems to me this was some sort of sign.

I met many wonderful women today at the luncheon and we even heard from a guest speaker, Lt. Colonel Fitch, from the Army. The Lt Colonel served in Iraq and Afghanistan and shared with us what life is like for people living in Afghanistan. Afghanistan has nothing that drives its economy other than the growing of poppy plants which produce opium. The terrain is desert like and basically inhospitable.
Inhospitable for everything other than poppy plants! There is NO infrastructure such as roads, water, or power. Afghanistan is not considered a destination, it is more like a stopping and refueling point that connects the East to Europe. The way of life for the Afghans is harsh and complicated and without means to support their families, selling drugs to drug lords is their only means of livelihood. It was a fascinating sociological discussion, because what the American government provided (spending millions of dollars to do this) this Country was the creation of 80 schools for the children. Education is vital for any society, but throwing education at a problem isn't always a solution. It may be a short term bandaid, but the bigger question becomes what will these children do with an education, if there is no industry or means to make a living (other than through the cultivation of drugs)? Education can provide hope, but so much more needs to be done. Yet is this the job of our military to be stationed overseas and help create and set up schools? I am making the discussion much more simplistic than it actually was, but nonetheless, it made one think and I felt by the end of the talk I had a much better understanding of Afghanistan.

 
The absolute highlight of my day was meeting Diane. Diane is the secretary of this women's group, but why she won over my heart is because she is an avid blog reader. She reads the blog faithfully every night and has followed Mattie's battle with cancer and of course life as we know it now. Diane told me she never knew she could fall in love with someone she never met. Diane began reading our blog when Mattie was alive, and loved Mattie's sweet and angelic face. Diane let me know that she thinks I am one of the bravest people she knows. It is funny, Diane and I never met each other before, but it was as if we knew each other all our lives. Diane sent gifts to Mattie when he was alive, and some of his favorite items came from Diane.... toy pirates and a beautiful treasure chest. It was wonderful to meet in person the lovely lady who bestowed these gifts, gifts which brought Mattie much happiness.

 
Diane and I spoke about the blog, and I really felt honored to hear from someone in their own words as to why they read the blog. I knew why people read it when Mattie was alive. But now that the fight is over, what keeps people coming back? Diane feels the answer is me. She loves my pictures, my insights, my love for people and places, and I suspect wants to know what keeps me going after losing the greatest part of my life. I was meant to meet Diane today, and this encounter was very needed. She was simply therapeutic for me and I felt as if she truly appreciated me and what I am trying to do for the Foundation. If her sensitivity, empathy, and love weren't enough, she contributed to my addiction today with a wonderful one pound gift certificate to See's Chocolates. My favorite California candy store. In addition to talking about the blog, we also talked about some issues I don't discuss on the blog and I felt as if she not only understood my feelings, but also normalized them. So I went for lunch, but received an amazing gift of human connection.

At the luncheon, the President of the Women's group asked me to stand and had everyone give me a round of applause. I was stunned by this and wasn't expecting it. In addition, I was asked to come forward and share a bit of my story and tell them about the Foundation. I wasn't planning on any of this. When I got up to the podium, all the ladies were talking to each other. However, as soon as I started talking, I could have heard a pin drop. I think childhood cancer has a way of doing this. After the entire event was over, several women came up to talk with me and hug me.

Later in the afternoon, my mom and I went shopping. On the way to the mall, we were stopped by a train. Mattie saw this train many times while visiting LA in the past, and I snapped this photo in his honor. I saw NO deer today, but I saw a different Mattie sign. An unexpected treat was running into a huge farmers market on the way to the mall. We stopped and bought fresh peaches, strawberries, tomatoes, and string beans. So needless to say we had amazingly fresh things at dinner tonight.

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Today, September 13, marks the loss of another patient of mine. A little boy, who was my patient while I was at Hopkins. Similar to the two of you the parents have turned this tragedy into something which gives back. In this case, the mom is a photographer and goes into Children's hospitals and provides free professional photos of families and of the child. Similar to you, she holds on to the pictures of her son and is thankful today she spent so much time taking pictures of his life. She wants to provide the same for these families and has done so for six years now. I think it is amazing how you have chosen to give and how successfully you have accomplished giving back for pediatric cancer. It is not only a tribute to Mattie but a tribute to your own compassion, courage, and tenacity. Just a note, to say I am thinking of you this Tuesday, and every day."

The second message is from my friend and colleague, Nancy. Nancy wrote, "You give so much to others and the decision to give important statistics regarding childhood cancer is so valuable. The last two days have given me pause as the statistics are overwhelming regarding diagnosis and underwhelming as far as advances in treatment. For me, I was raised with the idea that our children are the future. I guess many politicians forget this concept until it strikes them personally. I remember that before Michael J. Fox and a Senator's wife were diagnosed with Parkinson's Disease, little funding and attention was present for this debilitating disease. For some reason, the increase in diagnosis has grown at alarming rates too. I know that Peter and you along with the PR firm are trying very hard to turn the tides for this lack of funding. The recent note from one of the mothers now at Georgetown Hospital with her child was so beautiful and complimentary. So many appreciate what the Foundation and Peter and you , specifically, are doing towards righting this current situation. I guess it must be time for deers to roam the streets and roads. The fact that Peter and you are seeing so many in both locations does make one stop and reflect that there may be a 'higher power' that gives us symbols to connect with our loved ones who have died. Finally, seeing the pictures of Mattie with Charlotte have been very special. She is a cute little girl and has the heart of a much older soul. It is important for us to see all phases of Mattie's life and those where he is playing and being a little boy in spite of his treatment and disease are priceless. As this marks another Tuesday without Mattie, I wanted you to know that all of you are loved and thought about today and every day."