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

April 20, 2013

Saturday, April 20, 2013

Saturday, April 20, 2013

Tonight's picture was taken in April of 2009. Peter and I took Mattie out for a walk and fresh air. While on our walk, we paused by this beautiful azalea. I always associate azaleas with April and Mattie. These glorious flowers seem to bloom during Mattie's birth month. I used to tell Mattie, that azaleas were blooming in celebration of him. He seemed to like that notion!


Quote of the day: The tragedy of life is what dies inside a man while he lives. ~ Albert Schweitzer 


One has to pause over Schweitzer's quote and in light of what Boston has survived this week, I do believe a little something died inside all of us from this tragedy. Even children living in Boston have experienced the ramifications (at such a young age!!!) of the Boston explosions. Whether through observations from the marathon itself or having lived through a neighborhood lock down. This is daunting and I imagine this whole week's act of terror is hard to explain to a child. When our safety, freedom, and future are threatened in any way, these feelings remain with us. We remember them, where we were when they occurred, and frankly we become somewhat jaded because we see a glimpse into the dysfunction and instability within our world. The unpredictability, insecurity, fragile nature, and in some cases the cruelty and lack of respect for human life is hard to understand, hard to rationalize, and also makes it challenging to regain trust again.
 

Last night's TV coverage of the streets of Watertown, MA, after the second suspect was arrested was a sight to see. The energy, the team work, the determination, the police/FBI presence, and the community spirit were evident, they practically jumped through the TV screen. While terror and horror surrounded us, the goodness of people also shone through. I can only imagine what types of celebrations happened on these streets, as we could see the applause, flag waving, and crowds forming to acknowledge each police vehicle that passed by. In the midst of this nightmare, the slogan.... "Boston Strong" has emerged. It captures the spirit and determination of this city, having lived there for three years, I remember it all too well.


Today Peter and I spent hours on our deck planting flowers. Last weekend we had glorious weather and it was dry. Fortunately we painted our deck then, because for the rest of this week it has been raining. Every day! Thankfully with the deck ready, we could plant today! We still have to get Mattie's fountains up and operational, but the garden is now in bloom!

 
Mattie loved looking out of his bedroom window and looking at our deck and admiring the flowers. Peter went to Mattie's room today and snapped a photo from Mattie's vantage point. Our garden is filled with all sorts of Mattie symbols from butterflies, to the sun, and even the moon! Our flowers are even Mattie colors this year with an emphasis on red, yellow, and orange. Peter and I always liked to garden, but now that Mattie is gone, it is therapeutic for us and somehow makes us feel connected to him.

April 19, 2013

Friday, April 19, 2013

Friday, April 19, 2013

Tonight's picture was taken in April of 2009. Mattie was playing Candy Land with his big buddy, Brandon. These two buddies were different ages and yet they both got something out of their connection. They understood what it felt like to have cancer, to be under treatment, and how to be a friend to each other while dealing with a life threatening illness. As you can see from this photo, Mattie wasn't thrilled with my picture taking and stuck his tongue right out at me. I nonetheless snapped the photo!

Quote of the day: Is there an answer to the question of why bad things happen to good people?...The response would be…to forgive the world for not being perfect, to forgive God for not making a better world, to reach out to the people around us, and to go on living despite it all…no longer asking why something happened, but asking how we will respond, what we intend to do now that it has happened. ~ Harold S. Kushner


I have been preparing for this day for weeks. What happened today? I went to Alexandria City Hall to file for permits for our annual Foundation Walk. You may be asking yourself, how difficult can this be? One application?! The answer is it is challenging because of the documentation needed for everything we offer at the Walk. If we use tents, I have to provide the manual of the assembly of the tents and a certificate that they are fire retardant. The list goes on. 

Last year when I found out I had to complete permits I was overwhelmed. Keep in mind that the Walk takes place on private property, not city land! Planning the walk is complex in and of itself but factoring in more paperwork, bureaucratic loop holes, and fees to process each permit, and I find it makes me aggravated. Thankfully, my friend Tina connected me with her local city council member in hopes that he could help me. When I wrote an email to the council member last year, he immediately responded and also connected me with the director of the permit office at city hall. The director got his staff jumping last year to help me in every possible way! Which I assure you is CRUCIAL since applying for special event permits is NOT easy and NOT every permit specialist truly understands the process. If your specialist doesn't get the process then the chances of completing extraneous permits which causes additional permit fees increases.

After my experiences last year, I decided to email the director of the permit office and alert him to the fact that I was coming into city hall today and would need help again. He remembered me from last year, mainly because after my written complaint the application process was overhauled. I was connected to a wonderful woman named Sonia today. I may never forget Sonia. She worked diligently with me for TWO and A HALF hours! She did not work with anyone else during that time. The permits needed for the Walk are: an electricity permit, a BUILDING permit (you heard me right for a rock climbing wall..... don't get me started on that), a fire permit, an amusement ride permit, and a noise permit. Each of these permits is managed by a different group in the office. So Sonia literally had to walk each permit from one group to the next in order to get the permits filed. It was labor intensive. Mind you I still need to file a permit with the health department to serve food at the Walk. I visit that office on Tuesday. Without Sonia, I wouldn't have gotten all these permits filed and with reasonable fees today! But the fun doesn't end here, on the day of the Walk, we also get inspected for fire issues, stability of amusement rides, and food before the event can open.

Sonia and I had worked so closely together that while she was helping me I sent her boss an email about her. She was so moved by my words, she started crying. I guess not everyone takes the time to give appreciation and positive feedback! Upon leaving we gave each other a hug and she is committed to helping me again next year. She even wants to work with me electronically next year so I can submit paperwork ahead of time to streamline the permit process. Just an amazing woman!

I suppose after a horrific week of watching the cruelty of humanity at the Boston Marathon, interacting with a selfless person like Sonia refreshes and restores my faith in the human spirit.

April 18, 2013

Thursday, April 18, 2013

Thursday, April 18, 2013

Tonight's picture was taken in April of 2009. What I love about this photo was it captured Mattie's spunk, flexibility, and sense of humor. Mind you his right leg had a CAST on it. That did not stop him from flinging both legs in the air and over his head while sitting on his hospital bed! I also love his left eye peaking out at me, because as always he had ONE eye on me most times. Sometimes I wasn't sure who was watching who....... was I watching Mattie or was he watching over me?!!!





Quote of the day: Tragedy was like that, a razor that sliced through time, severing the now from the before, incising the what-might-have-been from reality as cleanly as any surgeon's blade. ~ Kristin Hannah


Tonight I am posting an article from the Boston Globe about the eight year old boy, Martin Richard, who lost his life at the Boston Marathon. Seeing his picture makes the reality EVEN worse and very real. He had life in his eyes and was a cutie. I did not realize that his mom and sister were also injured in the explosion. In the article, they interviewed a 10 year old girl who went to school with Martin. She was asked how she felt, and she naturally said, "scared" but then she said "I never know where they are.” Her mother clarified the statement by saying that her daughter meant.... “Where the bad people are.” What a commentary, that at age 10, this young girl understands this concept. The concept is something that we as adults have trouble accepting and that is we are NOT in control and our fate is out of our hands.
Martin Richard now a symbol: http://www.bostonglobe.com/2013/04/16/dorchester-neighbors-mourn-martin-richard-year-old-boy-killed-boston-marathon-bombings/keiXi55ZFf2YGityy16EuN/story.html

After Mattie's battle with cancer and certainly his death, all of this changed me. Naturally that probably makes sense to some extent, but some of the changes are radical. I no longer like large groups of people and forget about crowds. Being in a large crowd is not only overwhelming to me auditory wise but I do not like feeling trapped in a space with a lot of people. I am not saying I can't do this, I can if I have to, but it isn't something I would gravitate to. Of course after seeing Monday's nightmare, it only further feeds my dislike for crowds. 

It has been another day stuck in front of the computer. I am working on all sorts of things for the Foundation Walk and today Peter and I launched our 30 day countdown campaign to the Walk on Facebook. I have been counseled on the benefits of using social media for promoting the Walk. This will be our first year having such a significant Facebook presence, and only time will tell whether this is a valuable way of generating Walk registrations and naturally funds toward our $40,000 financial goal.

 

April 17, 2013

Wednesday, April 17, 2013

Wednesday, April 17, 2013

Tonight's picture was taken in April of 2009. Peter and I took Mattie for a walk that day passed his favorite fountain near us. When Mattie was healthy, we would walk to this fountain often, especially on a hot day to watch and hear the water. So many gallons of water shoot up in the air from this fountain that it really does capture one's attention. Some times when we visited the fountain ducks were swimming there and Mattie got a kick out of it. Now when we pass this fountain, both Peter and I naturally think of Mattie.  




Quote of the day: You've faced horrors in these past weeks... I don't know which is worse. The terror you feel the first time you witness such things, or the numbness that comes after it starts to become ordinary. ~ Tasha Alexander


Before I describe my day, I think it is important that I pause and continue to acknowledge the tragedy in Boston. It is ironic that I can be disgusted and in awe all at the same time. I am in awe of the bravery, courage, and sheer strength of everyday people who risked their own lives (after all they didn't know whether more explosions were timed to go off) to help those who were direct victims of the explosions. I included a link to a CNN article below. An orthopedic surgeon was running in the marathon and he stopped to help injured people. As a surgeon he is used to blood and a certain level of gruesomeness, but even he said, "In all of my medical training, I've never seen anything like the amount of trauma I saw yesterday on the sidewalk there."

I find it very touching that victims want to be reunited with the "heroes" that saved them. I suppose this has occurred in other National tragedies, but I just don't recall this level of unity and desire to give thanks. The story of the Northeastern University Student, Victoria, and her desire to find Tyler (a firefighter who helped and stayed with her throughout her ordeal) intrigued me and Tyler did hear the televised plea and has reconnected with Victoria. Thank goodness for people like Tyler, who give us some glimmer of hope in the midst of such great turmoil and terror.  

Boston Marathon Bombing Heroes: Running to help:
http://www.cnn.com/2013/04/16/us/boston-heroes/index.html


I returned to Mattie's school today to work with Donna's kindergarten class. We covered Matisse, which is my second session a three part series. On my way into school, I passed the playground Mattie used to spend time on. The playground is glorious with all its spring trees blooming. Take this cherry tree for example. It is huge, pink, and so fragrant. I was compelled to take a photo of it before going into the school. 

Also on the playground is this amazing Red Bud Tree. What I love about these trees is they are electrifying! They almost glow PURPLE!



















I have to tell you I have taught at the undergraduate and graduate levels for over a decade. The retention from one week's class to the next was never exactly high. So when teaching five and six year olds, I suspected I would find the same or worse! This is my third year in Donna's classroom and each year I am simply amazed. Why? Because young children are sponges! You would be amazed at what they retain!!!! Last week, I covered Picasso. This week I asked the students some questions and they knew immediately that Picasso was born in Spain, that his first word was pencil, that his first art teacher was his father, and that he is considered the master of shape and the founder of cubism. I could go on, but you get the point. They are amazing.

This week, they are now used to my sequence of things. They know I lecture them for 45 minutes with a PowerPoint presentation (by the way, I think this is very impressive because this is a significant amount of sitting time), then we do a hands on activity, and the final part of each session is FOOD. I always bake them something that is applicable to the culture we are discussing. Since Matisse was born in France, the children had pain au chocolat today and LOVED IT!  

The children learned today that Matisse and Picasso had very different personalities. Matisse was very clean cut, well dressed, liked order and neatness, painted by day, and followed a daily routine, whereas Picasso was messy, had mice in his studio, and painted by night (because he wanted absolute QUIET around him).

Unlike Picasso, who was literally born an artist, Matisse came into art later in life. At age 20 to be exact. I explained to the children that one day when Matisse was 20 years old he became sick and his mom spent many weeks helping him recover. However, back then there was NO TV, radio, or cell phones. The children were stunned and couldn't even comprehend this..... after all what occupied Matisse while he was sick in bed? Well Matisse's mom solved that problem by giving him paper, paints, and other drawing implements. It is thanks to Matisse's mom that the world experienced the Master of Color and the artistic style of Fauvism.


The hands on activity today was "cut outs." At age 72, Matisse developed intestinal cancer and was wheelchair bound. Instead of giving up on life, he used is artistic talents to create another art form, using PAPER and scissors. I even showed the students a video clip of Matisse on youtube in which he created one of his cut out masterpieces:



I am sharing six final products with you tonight of the wonderful cut outs the children created. Unlike last week, this week, each child worked independently. I provided them with the cut out shapes and I assure you this is a LABOR of love that takes me two weeks to generate enough cut outs for the whole class to use. I work off templates because I want the children to have similar cut out shapes that Matisse worked with. But this is a ton of cutting using a very small scissor!







Here is another student cut out generated today!














Somehow when I saw this particular student's cut out it reminded me of Mattie's works! Mattie ALWAYS incorporated a SUN into everything he did. Out of the 13 students in the classroom, this is the ONLY student who incorporated a sun. It caught my attention.















As you can see, though I gave them all the same white piece of foam core and the same cut out shapes, each and every creation is unique. Just like them! My ultimate goal is to get the students to acknowledge that they are all artists. That there is NO right or wrong way to create. Creating comes from within and it is shaped by our thoughts and feelings. These are unique and therefore so is our art.

Something about this cut out reminds me of being under the sea! Once my three part session was over today, Donna had the students break into groups of three. Each person in the group had an assignment. One person was an interviewer, the other an interviewee, and the third was the videographer. I am amazed how the kids know how to use an ipad and record their group's interview. I was thoroughly impressed with the self-generated questions and how the group I worked with answered the questions. It is actually a great hands on assignment that gives children many skills.... the skills of interviewing, learning the art of asking questions, conversation, the technology component of an ipad, and also the retention of information on Matisse that I had just shared with them.

Before I left today, one of the children in my interviewing group told me he was happy I came today rather than tomorrow. He went on to tell me he is having surgery tomorrow and he didn't want to miss my class, my activity, and the chocolate snack. He held my hand and let me know that he considers me his good luck charm! Needless to say I was beyond touched!

April 16, 2013

Tuesday, April 16, 2013

Tuesday, April 16, 2013 -- Mattie died 188 weeks ago today.

Tonight's picture was taken in April of 2009. Peter and Mattie took the sides of a colorful box and tongue depressor sticks and used them to create a suspension bridge. It was a beautiful bridge and Mattie loved being able to drive his hot wheels cars over it. They played with this bridge for hours and days! The beauty of Mattie was he had an imagination and could see structures in his head, but the talent did not end there. He not only could see the design but he could also build it!


Quote of the day: Hate is a bottomless cup; I will pour and pour. ~ Euripides


In light of the horrific national tragedy in Boston, I feel that Euripides' quote is quite appropriate. Some people in our world are filled with hate, this is a GIVEN! Hate can be cultivated by or for various reasons, but it is nonetheless hate. Yesterday we saw the true impact of hate and disregard for human life. It was hate that inspired terrorism. I have listened to banter back and forth today about whether yesterday was indeed a terrorist attack. The semantics of this debate only served to infuriate me because I could picture myself in the shoes of someone who either attended the Boston Marathon or worse had a family member or friend impacted by this devastation. If I was that mother who lost her eight year old son in the explosion or was one of the 30 who lost a limb, I most likely would want to strangle someone over the debate the media has been creating all day over the word terrorism. Let's take politics out of the equation completely! Frankly when we can do that, people seem to think straight and more logically.

I am so perplexed by this debate, that I felt the need to look up the definition of terrorism. According to the FBI, "There is no single, universally accepted, definition of terrorism. Terrorism is defined in the Code of Federal Regulations as “the unlawful use of force and violence against persons or property to intimidate or coerce a government, the civilian population, or any segment thereof, in furtherance of political or social objectives” (28 C.F.R. Section 0.85).

Yesterday's horror was perpetrated on innocent people, civilians! It was an event (I mean the Marathon) that had no political or social agenda for that matter. Yet the aftermath of such an attack caused sheer panic and horror! Cell phone usage in Boston was stopped because of the fear of detonating more explosives, air traffic over Boston was grounded, and the chaos that ensued on the streets with limbs flying, blood everywhere, and death curdling screams were unforgettable. This was not simply an attack and I am sure if you asked anyone who at this crime scene they would most likely say that the "use of force and violence against persons" was both intimidating, cruel, and achieved many social objectives. 

Living in Washington, DC, I can safely say that I am sick of everything being politicized. During a tragedy like this semantics need to stop. Call a spade a spade and move on and help the city and people during a time of crisis. A crisis I may add which will live within all of these victims and their families for an eternity. While writing tonight's blog, I received a lovely email from my Boston friend, Angie. Angie and I went to graduate school together and though she lives in Rhode Island now, she was a constant support during Mattie's battle and now in our grief. Like myself, Angie is deeply saddened about what happened in Boston. Yet for both of us, Boston signifies a time when we saw each other daily and became friends. That kind of spirit and feeling will never die. I have lived in many cities, but to me Boston was special. I made very special friends there like Angie. I have no doubt this city will rise above this act of terror, but I continue to be perplexed, disheartened, and down right disgusted that anyone could get joy, satisfaction, and feel pride over inflicting human travesty and devastation.
 

April 15, 2013

Monday, April 15, 2013

Monday, April 15, 2013

Tonight's picture was taken in April of 2009. Standing next to Mattie is Nancy, one of the music volunteers that Mattie was very fond of. You can't see Nancy's music partner, Jerry, but Jerry was playing the keyboard. Jerry and Nancy did a weekly "name that tune" game with Mattie. In this particular visit, Nancy and Mattie were doing the hokey pokey. In so many ways, nothing could keep Mattie down. He had an energy and life to him despite being on chemotherapy and surviving limb salvaging surgeries.





Quote of the day: It’s odd, isn’t it? People die every day and the world goes on like nothing happened. But when it’s a person you love, you think everyone should stop and take notice. That they ought to cry and light candles and tell you that you’re not alone. ~ Kristina McMorris


It seems to me we are all lulled in some sort of sense of complacency. We believe we are in control of our lives, the things around us, and our future. Yet if you have experienced a trauma, you realize the reality of life isn't so predictable and worse, we truly have NO control over certain aspects of our lives. I found this out on July 23, 2008, when Mattie was diagnosed with cancer. Thankfully most of my readers have not experienced such a trauma, lived in a hospital's pediatric intensive care unit for over a year, and watched your child flat line while gasping for air in your arms. This is a horror that lives within me and it doesn't go away. Not unlike anyone else who has survived a trauma! My own trauma enables me to understand that today's act of terrorism in Boston will always be a part of each victim, each family, each observer, each resident of the city, and all of us as a nation.

I have been glued to the TV this evening watching the recount of horror of today's event in Boston. One has to wonder what kind of sickness would cause people to design and detonate such devastating types of explosive devices. Devices that would cause massive injuries. This was a well calculated tragedy, a tragedy which was designed to unfold in front of the press and media, so the whole world could have a visual and lasting memory of the gruesomeness of this year's Patriot's Day.

Boston is a city with outstanding hospitals and spirited people. The heroism of first responders was amazing, since they had to help people in barricaded streets, and they weren't prepared for meeting the needs of casualties in a war zone. Yet they triaged hundreds of people. Tonight we know that an eight year old girl is dead and her family will never be the same again. I, like so many, am deeply troubled by today's event. An event that reminds me that at the end of the day, no day is guaranteed. Our hearts go out to all those in the city of Boston and may there be acts of compassion and excellence performed within Boston's hospitals in order to save the lives of those impacted by this devastation and cruelty.   

April 14, 2013

Sunday, April 14, 2013

Sunday, April 14, 2013

Tonight's picture was taken in April of 2009. A friend of Mattie's gave him this alligator hand held claw. Mattie was mimicking the alligator's mouth each time I opened it! Peter obviously captured this cute moment in time, which showed Mattie's playfulness and sense of humor.



Quote of the day: Successful people are always looking for opportunities to help others. Unsuccessful people are always asking, "What's in it for me?” ~ Brian Tracy

Peter and I spent most of the day outside on our deck, painting it! Though painting can be hard work, I think the clean up job Peter did yesterday was much harder. In one of our flower bays there had to be a two inch supply of bird seed shells. Between yesterday and today, the deck has been thoroughly transformed. It has its first coat of paint on it. We are trying to get this done so we can begin planting next weekend.


Mid-day we took a break and went to the ballet at the Kennedy Center. My favorite company, The American Ballet Theatre (ABT), was in town and doing a three act ballet called Le Corsaire (which means the pirate). I had never seen this ballet performed and I was eager to see it given the story line and also given that ABT was performing it. At intermission time, we walked outside on the Kennedy Center terrace and greeting us was a duck threesome. I called them, "The Ballet Ducks." They were squawking up a storm, not unlike theatre goers, and the ducks were drawing all sorts of attention.

I can see why Le Corsaire is not a frequently performed ballet. I surmise the reason for this is simple.... you need a company who not only has the dancing talent but also the emotional depth to convey the content. This ballet was FILLED with a great deal of dancing, but challenging dancing. In the second act, the three principal dancers just stunned their audience. I mean STUNNED. Bodies defying gravity!!! I can't say I have been to a ballet in which I was so moved that I cried. Not because the content was sad, since this wasn't a tragedy, but because of the sheer beauty, skill, and emotion presented before my eyes. Needless to say, today's performance got several standing ovations and once again it has reminded me why ABT is celebrating its 75th birthday. Just a stellar company. Even the Washington Post stated, "the American Ballet Theatre continues to prove 'why dance is not a luxury or a frill but a necessity of life' with Le Corsaire. I couldn't have stated it better. This performance was the highlight of my day.


On our walk home, we passed this beautiful row of cherry trees. I am not sure why I never noticed this row before but these pink beauties and fragrances in the air caught my attention today.