Saturday, April 30, 2016

Saturday, April 30, 2016



Tonight's picture was taken in April of 2003. Mattie was a year old and beginning to toddle around. He loved the coffee table, because it was an excellent prop and helped him maneuver his way around while holding it. Years later I took a photo of Mattie and had him hold up this toddler photo next to him. I can't think about one of these photos without the other. They seem like a pair to me. 

This photo was taken (May 2006) about three years after the one above. Mattie always got a kick out of seeing himself as both a baby and a toddler. 

















Quote of the day: The way a team plays as a whole determines its success. You may have the greatest bunch of individual stars in the world, but if they don't play together, the club won't be worth a dime. ~ Babe Ruth

It was a FULL working day for both Peter and me. I am happy to say that the raffle baskets for the Walk are NOW COMPLETE. We wrapped them today, I created raffle ticket boxes for people to place their tickets into, as well as raffle placards explaining what is in each basket. We are featuring 9 great raffle baskets this year and tickets to earn a chance at winning one of these raffle items can be found on our Walk Website: https://mmcf.dojiggy.com/ng/index.cfm/aa27806/regCatalog/products/?p=ad142620

Here is a close up of the 9 Raffle baskets. These baskets cover everything from gift cards to museums. 

1) Washington Nationals Tickets
2) Washington Capitals Tickets
3) Dining Around Town
4) Lego Collectibles
5) Lights, Camera, Drama
6) Wine of the Month
7) Money Tree
8) One of a kind t-shirt quilt
9) iPad Mini 2

Meanwhile, as I was home contending with the raffle, Peter went to Alexandria to conduct a building project with a Girl Scout troop at Mattie's school. The Girl Scouts asked to work with us because the Troop needed to build something to qualify for their Bronze Award. 


Peter began construction on 6 corn hole boards (like a bean bag toss) last weekend. We are having a tournament at the Walk and therefore needed to have the boards. However, purchasing them is quite costly. So we decided to make them from scratch. All I can say is WOW! You have to know what you are doing to take on such a project, and fortunately Peter is skilled in this area. But I can say that round 1 of building took all of last week. 

Today, Peter transported all the corn hole boards, legs, and bases he created to Alexandria, VA. To the girl scout troop leader's house. Fortunately Peter had a strategy in mind about how the girls were going to assemble the remaining parts of the table and then paint them. Having such an organized plan was crucial given the age group.... teens. I am not sure if my readers have experience working with teen girls, but they aren't an easy group to work with and Peter learned this first hand. Girls are much more emotionally complicated than boys and I have a feeling if a boy scout troop was asked to take on this project, the day would have gone differently. But Peter handled it beautifully and frankly did better than I would have under these circumstances. Even when I taught young adults in college, I had little tolerance for disinterest and goofing around. If one did not want to listen and be in my class, I would have preferred they just left rather than disrupt an entire classroom with their agenda. Teenage girls are not very different in my perspective and unless they want to do something and are motivated to do it, they most likely won't and would prefer to socialize. Which can make the completion of the assembly of six corn hole boards difficult!

Peter worked with six girls today and four other dads. 














Here is one of the girl scouts, Tori being assisted by a dad. Peter set up different work stations so groups could work on an entire corn hole board from start to completion. 

Here were the painting
stations!

The final product, so far! Next weekend they will paint and design them! 

Friday, April 29, 2016

Friday, April 29, 2016

Tonight's picture was taken in May of 2005. We took Mattie to Accokeek Park in Maryland, right alongside the Potomac River. As you can see, Peter was teaching Mattie how to skip stones in the water. Of course Mattie was more interested in the BIG ROCKS and tried to pick one up and toss it into the water. Mattie loved the splashing and the sound of water displaced by a rock. 


Quote of the day: Remembering may be a celebration or it may be a dagger in the heart, but it is better, far better, than forgetting. ~  Donald M. Murray


It has taken me about three weeks to work with Alexandria City Hall and work out the details for ALL the permits we need for the walk. I was contacted by the permitting office yesterday and told that all our paperwork was accepted and that I could come in today to pick up the permits and pay the fees. In theory that should have taken no more than 20 to 30 minutes! Guess what? In typical permit office fashion, I was there almost three hours. The worst part is when I got there they said my permit application wasn't accepted and I needed to provide more paperwork (paperwork that I did not have with me!). I was livid because that would have meant I had to drive all the way back to DC and then out to Alexandria again. There was NO WAY I was going to waste my time on this. So I expressed my frustration, given that I was told everything was all set yesterday and all I had left to do was pay the fees. I was confused how this could have changed from yesterday. Needless to say I put my foot down and said I wasn't leaving without permits in hand and I expected them to help me figure out what they deemed as missing. While working this out, I also sent a formal compliant to the 2 chiefs of the permit office. Why do I know these men, guess why? BECAUSE every year it is something else that goes wrong and between dealing with miscommunications and disrespectful behavior and treatment that the staff dishes out to permit applicants, my tolerance is LOW. It is low because we pay close to $600 in permit fees and mind you our Awareness Walk is held on private property within Alexandria. So I feel the city is making money off of us, when this money could be going to a more worthy cause. Nonetheless, I have permits in hand tonight!!! So that is done for one more year. 

This evening Peter and I went out to dinner with our friends Ellen and Jeff. Their daughter, Charlotte, was in Mattie's kindergarten class and they were the closest of buddies. In fact, Mattie gave Charlotte a plastic ring he earned at the dentist, and told Charlotte it was her engagement ring. Needless to say, Charlotte happily accepted the ring. They were good friends, made each other laugh, stood up for one another, and just appreciated one another. It was a special bond. Tonight, Charlotte's parents let us know that they are working to create an endowed scholarship fund at Mattie's school in his honor. The fund would have Mattie's name attached to it and four chairs in the upper school theatre will have memorial plaques with Mattie's name on it. I can't tell you how STUNNED Peter and I were to hear this! We had no idea they were even thinking of doing this. I always wanted to create such a fund, but to me it is actually more meaningful that it was started by a friend. Friends who still remember our son and want his legacy to always be remembered at the school he once attended. To know Mattie will never by forgotten and instead memorialized for the special and lively fellow he was, has to be the greatest gift one could give to grieving parents.  

Thursday, April 28, 2016

Thursday, April 28, 2016

Tonight's picture was taken in May of 2006. Based on the fact that Mattie is holding a balloon, I know we went to one of two places: 1) Harris Teeter, the grocery store, or 2) Nordstroms, which gives children balloons in their shoe department. We never went to either of these stores without picking up a balloon. It is funny how a balloon can change one's mood! Another thing I see in this photo was the line up of Mattie shoes going up the staircase. You can see them behind him. Mattie loved lining up his shoes on the stairs because it made it very easy to select a pair before going outside. Not that I forgot this per se, but seeing the photo of this brings it all back to me. 


Quote of the day: Energy and persistence conquer all things. ~ Benjamin Franklin

This morning I had the opportunity to meet MaryAnne Pace Fiorella. She came to my home and dropped off ALL this coffee for our snack/item cart at Georgetown University Hospital. How did I meet MaryAnne? ON FACEBOOK!!!

MaryAnne works at Massimo Zanetti Beverage, USA, and also supports the Roc Solid Foundation, a childhood cancer organization that builds hope through play and directly provides: playsets, room remodels, iPads and cancer-free parties.

MaryAnne has been following Mattie Miracle on Facebook and has been learning about our item drives which go to stock our snack/item cart. Around Mattie's birthday, MaryAnne sent me MANY boxes of coffee and promised more were to come. Today, she literally drove up to DC from Virginia Beach (where she lives) to deliver these boxes (and to visit her daughter and son).

We are working with MaryAnne to supply the hospital with coffee on a monthly basis! She is way too generous with us and wants to support our Foundation and us in our loss. She says every box of coffee is like a prayer from her to us! A beautiful sentiment no? I am typically not a Facebook fan, but without it we would never have been connected to MaryAnne.  

Wednesday, April 27, 2016

Wednesday, April 27, 2016

Tonight's picture was taken in May of 2007. I entitle this "my laundry buddy." When this cart came out that meant it was laundry day. To do laundry in our complex means that we have to traverse to another floor. It isn't ideal even as an adult without a child in tow, but with a baby/toddler it took challenging to a whole new level. Trying to balance carrying Mattie and dragging this cart wasn't easy. But Mattie got used to this chore over time and it became fun for him. As he got older he would ride his bike through our hallways to the laundry room, or his scooter, or you name it. Of course there were always cars coming along with us too. It wasn't boring. I remember after Mattie died having to get acclimated to just me again.... laundry without my buddy. 


Quote of the day: I have always tried to hide my efforts and wished my works to have the light joyousness of springtime, which never lets anyone suspect the labors it has cost me.... ~ Henri Matisse


I returned to Mattie school today for my second session in the art series. Monday we covered Picasso and today we were discussing Matisse. Prior to the presentation, I asked the children what they remembered from Monday's class. I ALWAYS get a kick out of this because when I would ask my graduate students this same question, I would get blank stares. But this isn't true for five and six year olds! They are like human sponges even though they are very active and distract easily. You may think they aren't listening, but that really isn't the case. The kids did a great job reminding me that Picasso is the father of cubism (a big word, but they remembered it), that he is all about painting geometric shapes, using his imagination and expressing his feelings! They also remembered he was from Spain and recalled the stories I told them about Picasso's personality and painting style! AMAZING!!!

The first session is always hard! I have experienced this all six years that I have done this project. It is hard because the children have to get used to my style and the structure I provide. After all I would imagine that most of their teachers don't lecture them with power point slides for 30 minutes. So the first session is a real stretch for them but by the second session, they get the plan and how things work!

So today we reviewed Matisse through a power point presentation. We discussed how Matisse came into art later in life, in his 20s (unlike Picasso, who was practically born an artist). He was studying to be a lawyer but then came down with a debilitating illness and he had to convalesce at home for weeks. I explained to the children that there was NO TV or the internet to keep him busy, so he landed up driving his mom crazy. She needed to find an activity for him. So what she did was she brought him a box of paints and gave him paper. It was then that he learned there was an inner artist in him ready to come out. Needless to say he never returned to law school. 

In his 70's, Matisse developed intestinal cancer. He was wheelchair bound and could no longer physically paint. Clearly he could have given up, but the spirit of art was inside him and he was passionate about still creating. So Matisse developed a new art form called painting with scissors, or cutouts. Matisse could spend years developing his cutouts. Paint was replaced with paper and the intricate designs he would cut on paper from his wheelchair or bed, were remarkable.  Here is a 40 second clip of Matisse creating a cut out:

http://www.youtube.com/watch?v=qlnBcaZEGb0&feature=BFa&list=PL9AEA8A82B409ECC6

Matisse is considered the father of Fauvism (which translates into Wild Beast). His style was considered at the time in France to be wild because he used bold colors, wild brush strokes and had NO regard to the natural colors of people or objects. So for example, if he painted a banana, he would use his imagination and paint it ANYTHING other than yellow. In addition to color he was fascinated by patterns. A skill he learned from his mom. His parents owned what we could call a hardware store today and she sold fabrics, wall papers, and so forth. So as a child he saw these materials and was influenced by them and his mom's knowledge of them. 

Even in Matisse's cutouts you can see his bold use of color and patterns. He literally translated his fauvism style to paper. 

Matisse's cut outs are NOT small. As you can see from this one in a museum, it can take up a whole wall!

The children absolutely loved the ability to cut out their own shapes and patterns today in paper and then assemble them onto a piece of foam core. You can see the glorious Scissor Art Gallery that results. The compositions are lying on the floor. 

Today was a damp and gray day, but these colorful creations really brightened up the classroom 

I am going to share a couple close up photos of the cutout creations. This one is 3-D in nature, which is really new for me, because in the past five years no one has done something like this!

This student entitled her cutout.... Flowers Dropping!

This one was entitled, "The Best Day Ever." In fact while discussing the title with the little boy, he and his table mates told me I must be famous! You got to love kids. They determined I am famous because I know so much about Matisse and Picasso. Interesting how we can be special in the eyes of a child. SO unlike in our adult world. 

To me these are true Matisse like shaped!! 

This child enjoyed cutting out the creations and wanted to explore layering!

This one was entitled, "The Sniffing Dog." The dog is in pink!

Tuesday, April 26, 2016

Tuesday, April 26, 2016 -- Mattie died 345 weeks ago today.

Tonight's picture was taken in May of 2008 during Grandparents day at Mattie's school. This was his first and last grandparents day, which of course at the time we thought we would have many years of them to look forward to! Pictured with Mattie is Leslie, Mattie's kindergarten teacher. Each year when I do my art series at Mattie's school I always see Leslie. In fact I saw her today as I set up for the second lesson tomorrow.  It is hard to believe we have known each other for 9 years and Mattie is no longer part of this equation! 



Quote of the day: It's often said that a traumatic experience early in life marks a person forever, pulls her out of line, saying, "Stay there. Don't move. ~ Jeffrey Eugenides

As I was walking to my physical therapy session today, I passed these glorious roses. Besides the vibrant color hitting you, the fragrance was intoxicating. You don't expect to see this in the middle of the city. But do you see the one ballet pink rose in the center? This truly caught my eye! Why should there be one lone pink in the midst of all this color!? There are no answers but it seemed special to me.

I have been going to physical therapy since March 7. I am now on my 13th session. Is it helping? Yes but I still have issues and the therapist now wants me to see a rheumatologist to get assessed for fibromyalgia. 

I have known several people with fibromyalgia and it is interesting that all my doctors never mentioned this to me. I realize it is one of those rule out diagnoses because there is no test to confirm it. Yet it would explain many of my long term symptoms. When I researched the causes of fibromyalgia I found that it is unknown. However, researchers think a number of factors might be involved. Fibromyalgia can occur on its own, but has also been linked to being exposed to stressful or traumatic events. I did not need to read any further because I immediately got it! I would say my body hasn't been physically the same since Mattie died from cancer. It is like I live with different system failures at various times during the year. 

Fibromyalgia is a disorder that causes aches and pain all over the body. People with fibromyalgia also have "tender points" throughout their bodies. Tender points are specific places on the neck, shoulders, back, hips, arms, and legs that hurt when pressure is put on them. The symptoms are widespread pain, cognitive difficulties, fatigue, sleep issues, emotional issues, and headaches. Naturally with many of the other health issues I contend with, there is no "cure." But it does require alternative lifestyle changes such as being active (I work at a desk all day and sometimes night, especially during fundraising season) and also having less stress. 

Certainly from the outside running Mattie's Foundation may look easy, but it is like running a small business without a staff. If the Foundation does well, it is thanks to us, and if it fails it is thanks to us. That is a great deal of pressure to live with each year, especially when it is tied to the memory of our only child. As spring comes, I always say after the Walk, I will be able to catch my breath. But it never happens, and just like last summer, I already have things piling up on my plate such a coordinating a strategy session with our researchers, writing another book chapter, and the list goes on! All good problems certainly but my body always makes me aware of what I survived with Mattie and anyone who thinks childhood cancer just impacts the child is VERY wrong. 

Monday, April 25, 2016

Monday, April 25, 2016

Tonight's picture was taken in March of 2009. Mattie was sitting with one of his art therapist's, Jessie. This was a Mattie creation, one that I absolutely love and it hangs in our dining room. The irony of this masterpiece is it looks like something Picasso would have approved of. Full of shapes and clearly coming from Mattie's imagination. 

Quote of the day: Every child is an artist. The problem is how to remain an artist once he grows up. ~ Pablo Picasso

On my way into Mattie's school building this morning, I passed his memorial tree. I heard a lot of squawking coming from the tree. So I went over to investigate. What I found was birds flying in and out of Mattie's birdhouse. If you look closely you will see a bird (he's brown) sitting in the tree on the upper left hand side of the birdhouse. It was a wonderful sight! 



Today was my first session of three for Donna Ryan's kindergarten class. Though Donna wasn't Mattie's teacher, she knew him as Mattie's class and Donna's class did many activities together. In the Fall of 2010, Donna invited me to her classroom to get to know me better and to find a way to have me interact and guest lecture her students. Why? Well she heard about me from Mattie's kindergarten teacher. When Mattie was in kindergarten I tried at every opportunity to participate when asked. I did all sorts of activities with the children from gingerbread man decorating, to cutting open a coconut from Florida to name a few. 

When I met with Donna in 2010, we talked about all sorts of things and my interests. She then mentioned that she reads a book to the children called "When Pigasso met Mootisse," and she would love the children to know more about the painters, other than from this story book which portrays them as a pig and cow. Given that I love art, I decided to take that challenge on. It was MOST definitely a challenge because I had NO curriculum to go from and this landed me in the library doing research. It took me weeks to present slide presentations and to figure out clever hands on activities for the children, because I remember distinctly with Mattie (and really any student), to truly learn a concept you have to apply it!

I began my first lecture series in 2011, and have been asked back ever since. So this is my SIXTH year of working with Donna and her class. I have gotten to know six different generations of kindergarten students in essence. Each class has its own rhythm and flow and you have to teach accordingly. 

Today we started the series with Picasso. The children learned he was from Spain, that he is the father of cubism (A style of painting that does not mimic real life. Instead the people and objects are painted using geometric shapes, such as cubes, circles, and triangles. In addition, the people or objects in the painting are shown from many different points of view all at the same time.), that he painted based on how he felt and he strongly believed one should paint using imagination. 

They learned a little bit about Picasso's personality and his love for a messy studio, painting at night, and needing absolute quiet to paint! But in essence Picasso was born a painter, and he painted what you and I would call great works of art as a teenager. 

I introduced the children to Picasso using Power Point slides. They literally sit still for about 30 minutes as we talk content and they see slides of Picasso's great works. Then they move to their tables where they get to experience art and try to apply the concepts learned. Of course I always end each session with a home made treat and today's treat was apple empanadas.

This is Picasso's Woman with a Hat. Peter literally traces the form of this painting for me onto poster boards. So what the children see in front of them is a white poster board with black marker shapes all over it. They then need to work with their tablemates to create a masterpiece together by painting in the shapes that they see. 

What I have consistently seen from year to year is NO ONE's finished product looks like Picasso's and also no two paintings in the classroom look the same. Picasso would have loved this because he believed it was important to follow your feelings and paint using your imagination. 

This is example of what was happening at one work table. You can see the white poster board and the black marker outlines.

This is a continuation of the photo above..... the final product!

Here is another table's creation. Though it looked finished the group kept working on it. What I find fascinating year to year is there is always a group who adds a border around the poster board and then starts to add patterns (dots, stripes, etc) to the composition. This isn't really Picasso's style, more like Matisse. Which intrigues me because the children are naturally blending Picasso and Matisse's styles, without knowing anything about Matisse yet!!! 

So you saw the painting above, here is the final product. You can see patterns everywhere!

Here is another table's creation in progress. 

This is the final product from the creation above. 

I return to the classroom on Wednesday to discuss Matisse! 

Sunday, April 24, 2016

Sunday, April 24, 2016

Tonight's picture was taken in April of 2004. Mattie was two years old. This is a follow up to last night's blog photo. We took Mattie to the Reston Zoo and you can see that Peter was sharing goat/sheep food with Mattie. Reston Zoo is a very hands on place where they allow you to feed and touch the animals. Mattie was cautious about the feeding part but eventually got right in the mix of things. 


Quote of the day: Unless someone like you cares a whole awful lot, nothing is going to get better. It's not. ~ Dr. Seuss


Peter and I had the wonderful opportunity to spend the afternoon with the Take the Stage Performance Company. Take the Stage hosted a benefit musical for Mattie Miracle and it was a huge success! There were over 150 people in attendance and many of them were people who were unfamiliar with our work. In addition, Take the Stage paid for 18 families whose children are being treated at Georgetown University Hospital to attend today's performance. 

The children in the production are in grades 4 to 12. One may think how good could such a musical be with this age range? Well in this case, the answer is excellent. They performed 15 numbers and literally the talent, staging, costumes, and choreography were something you could easily see from a college production. IT WAS THAT GOOD! 

Besides the talent what resonated with me were two things: 1) the energy and passion these children have to perform and to raise money for a good cause made me pause and take notice. In order to do this benefit production they had to rehearse and work hard (they performed this same show four times in February, but their season is over now, yet they came back for this benefit show)!  They were doing the Foundation a major favor, but they did not look at it like that. They were happy to devote their time to rehearse and to perform today. This is self evident in the beautiful smiles you will see below. 2) Given their ages you wouldn't think they could emote and express such deep feelings through song, but they did it beautifully and memorably. Their songs resonated with each of us in the audience because they sung about human emotions.... being disappointed, not fitting in, and the need to be listened to and heard. 

Before the performance we went backstage to meet the cast! Check out these smiling faces! Peter snapped a photo of them as they were listening to me talking and thanking them!

Cast of 25!

This group uses LIVE music! Here is the orchestra. 

This song was entitled, "Live in living color" from the play Try and Catch me.

This song was entitled, "Somewhere hovering over Indiana" from A Christmas Story: The Musical.

"Forget about the boy" from Thoroughly Modern Millie

"If only you would listen" from School of Rock. This was an incredibly moving song because it gets to the heart of so many issues we see in society today. People not truly listening to one another! 

"Step in time" from Mary Poppins.

"Coffee in a cardboard cup" from 70, Girls, 70. This was a Kander and Ebb song and it was fitting for these musical geniuses. Very clever and witty. It basically was depicting our BUSY society, people running around and attached to their cardboard cup of coffee. Each kid was dressed up in a different professional outfit, and it was humorous and at the same time a humbling reality we are faced with in our society. 

"Middle of a moment" from James and the Giant Peach.

"Raise you up" from Kinky Boots.

After the show, Peter and I were photographed with Susan Alexander Thompson (director) and Michael Axler
(music director).

Susan is married to our board member, Brett. Brett has helped Mattie Miracle with lobbying for psychosocial care. Susan and Brett are a dynamic couple and we are grateful to both of them for their support of Mattie Miracle.

Last night I hand wrapped and bowed 25 peach colored roses. After the performance we handed a rose to each performer. The children were truly touched and appreciative of this gesture.