Saturday, April 29, 2017

Saturday, April 29, 2017

Tonight's picture was taken in June of 2009. We were given tickets to see a Nat's game, so we took Mattie to the stadium. I will never forget this visit to the ball park. Why? Because we got many rude and hurtful stares from people all around us. You would have thought Mattie had four heads and was purple! Mattie noticed people stopping and looking, but how I did not throttle a few people that day is beyond me. Eight years later and I still can recall this exact moment in time. I am not a sports fan anyway, and if I never return to Nat's park, that would be fine with me. 


Quote of the day: Just living is not enough... one must have sunshine, freedom, and a little flower. ~ Hans Christian Andersen

Look who was enjoying his time in the living room last night. Sunny will roll on his back on occasion and what he is looking for is attention. Specifically he LOVES tummy rubs. 

We took Sunny to Scott's Run Nature Preserve today. I can't tell you how many times we took Mattie there. Mattie loved crossing the water on these large stepping stones. Though Sunny isn't fond of water, he wasn't going to negotiate his way on the stones. 

Mattie traversed this part of the trail many different ways..... by stepping on stones, through the water, and at times on top of Peter's shoulders.

Sunny and I by the overlook! We walked in the morning because today was in the 90's and very humid. 

Sunny took to this trail like a duck to water. He absolutely loves new adventures and checking out the trees, bushes, birds, and occasionally what ever dog he meets along his path. 

Friday, April 28, 2017

Friday, April 28, 2017

Tonight's picture was taken in May of 2009. Mattie was visited by his friend Abbie. Mattie and Abbie went to the same preschool and were in the same kindergarten class. That day they decided to take a big bin (used to catch vomit in all reality) and make a concoction  inside of it of legos, goldfish, water, and you name it. They had a great old time. Visiting Mattie in the hospital wasn't always easy. There were times he did not want to see his friends, hear noise, and with that would refuse people access to his room. As a friend visiting, one had to understand this and not take it personally. Some parents refused to allow their child to visit Mattie as he got sicker, but regardless of how Mattie was doing, Abbie came to visit and play. In fact, she treated Mattie always as a friend, not someone she was simply visiting because he had cancer. 


Quote of the day: I dreamt we walked together along the shore. We made satisfying small talk and laughed. This morning I found sand in my shoe and a seashell in my pocket. Was I only dreaming? ~  Maya Angelou

The little girl you saw in the photo above is now 15 years old. This is what Abbie looks like now. She is in 9th grade, where Mattie would be if alive. Abbie, with assistance from her mom, got to the donut store at 7am today, bought donuts and set up this sign-up table in the hallway of the high school. Abbie is trying to recruit students to join her Walk team, and believe it or not, donuts are a great incentive on a Friday morning. To make a long story short, Abbie recruited 10 other students so far, and collected over $100 in donations, in addition to registrations. 

A close up of the table! Duck Donuts just opened in Alexandria, VA, so it is the hottest donut right now, APPARENTLY! Abbie had flyers about the Foundation's Walk, registration forms, and in a matter of a short period of time, was very successful. There will be another donut incentive table next week at well at School. 

Tempting no? Apparently these boxes of donuts accomplished their goal today. Though Mattie missed 1st grade through 9th grade, it is wonderful to know that children still remember him. Of course, I do think that for these children who remember, they are nurtured and encouraged to do so by their parents. These parents aren't afraid to understand and reflect on the nature of such a significant loss. Accepting this loss and talking about it among teenagers isn't easy, which is why being given a safe platform to talk about this must happen at home. It isn't only a conversation that children should hear about from their school counselor. Mainly because this will be a VERY acute or non-existent conversation at some schools. Whereas processing and accepting loss takes a long time, and the only one going on this lifelong journey with a child is one's parents and family members.  

Thursday, April 27, 2017

Thursday, April 27, 2017

Tonight's picture was taken in September of 2008. Mattie was a month into treatment. While home, his close preschool friend, Zachary, came to visit. Zachary brought Mattie an Indiana Jones hat and other accessories. Mattie loved the hat, which sits on our Mattie memory rack in our living room. As if the hat is waiting for its owner to come back and wear it. Throughout Mattie's battle with cancer he had a handful of friends like Zachary, who came to visit him regardless of the situation. I am not sure who I admire more.... the children or their parents. Because it takes courage to enter a hospital room and see a child sick with cancer and transformed by the treatment and the disease. Many parents over time did not allow their children to come and visit Mattie, and I can appreciate why. But I have to say I am thankful for those who kept on visiting Mattie until the end. 


Quote of the day: The greatest use of life is to spend it for something that will outlast it. ~ William James 


Peter and I both subscribe to one of our corporate sponsor's blog postings. Dominion Consulting has been sponsoring the Mattie Miracle Walk since 2012. They are our largest corporate sponsor and I was thrilled to see their posting today entitled, "NOT JUST ABOUT MONEY…OUR COMMITMENT TO THE MATTIE MIRACLE FOUNDATION."

The NOT JUST ABOUT the MONEY is a direct take off of our tag line.... IT'S NOT JUST ABOUT the MEDICINE. Which was great to see, but it is the message behind their blog title that was so meaningful. 

Dominion Consulting not only financially supports Mattie Miracle, but they also coordinate a Walk Team to help raise funds, they host an activity table at the Walk, they provide us with professional resources such as consultants who moderated our psychosocial round table on Capitol Hill in January, and they also provide assistance with press releases.

Mattie Miracle knows "It's NOT just about the medicine," but Dominion Consulting clearly shows us "it's NOT just about the money." They stand behind our mission in all ways possible. I am not sure how we lucked out to find such a committed community partner, but I encourage our Walk attendees to visit Dominion Consulting's activity table at the Walk and if you don't know who they are, they will be the people who are ringing orange COW BELLS at the starting line of our Walk! 


To read Dominion Consulting's blog posting, go to:

http://dominionconsulting.com/not-just-moneyour-commitment-mattie-miracle-foundation/

Wednesday, April 26, 2017

Wednesday, April 26, 2017

Tonight's picture was taken in May of 2009. This was at the Mattie March held in Mattie's honor at his school. Clearly who ever took this photo was fascinated by Mattie's love of caterpillars. On the day of the event, Mattie used a cup to collect caterpillars from the bushes around the School's track. Notice that Mattie was holding one. But this was only one of many he collected that day and that came home with us!  


Quote of the day: Life engenders life. Energy creates energy. It is by spending oneself that one becomes rich. ~ Sarah Bernhardt


The plans for the 8th annual Mattie Miracle Walk & Festival are well under way. This is always a stressful time of year because I not only have to plan the event but I have to raise money. Either one of these things alone is challenging but together, watch out! Our goal this year is to raise $80,000. We have raised around $40,000 so far, making us 50% of the way there! But now I worry about the remaining 50%! Last year the walk generated $85,000, and I took this into account when deciding this year's goal. 

I am happy to report that we have 14 walk teams signed up so far. Two of which feature a childhood cancer survivor and a third team which was created in memory of a mom (with four children) who lost her battle to kidney cancer. We are very honored to have these three teams with us this year because typically Mattie Miracle raises money from people in the community unaffected by childhood cancer or cancer in general. It means a lot to me that these three groups touched by this disease wish to support our psychosocial mission. If you haven't done so, please check out our Walk website: www.mmcfwalk.com. 

The beauty of our event is you can support us in person or even join a team virtually and help us raise money. So walk, join a team, purchase raffle tickets, or contribute to our event.... lots of ways to support this event even if you can't attend. All walk proceeds go to support our psychosocial programs for children with cancer and their families.  

Later this afternoon, I had to get an MRI of my back. The technician asked me if I needed to hear music and so forth. When I asked her how long I would be in the tube, she said 20 minutes. So I passed on the music. I have taken so many MRI's of the brain, and been through countless ones with Mattie, that I literally can tune out the noise. I reflect on all that Mattie had to endure in an MRI tube, and that gives me pause. It is uncomfortable enough for an adult, but how they expect children who already have issues and are in pain to withstand such a scan for over an hour at a time is unreasonable. Bordering on inhumane, especially if you have an inpatient tech who is inexperienced working with children. We had many of them at Georgetown. One tech truly did not like Mattie and he told his colleague, Jey (who was very fond of Mattie), as much. Jey told this tech he had NO IDEA about Mattie, Mattie's personality, how his life was transformed by cancer and what Mattie endured. In the end, it turned out that this tech had a change of heart about Mattie, but it wasn't a pleasant story to hear about. 

There were many times living in the hospital that I wanted to throttle people! I was never physically combative (though I can appreciate why someone could be), but when I got upset, people knew it! Typically if I did not get a response out of the person I had a disagreement with, I went above their head. Up the food chain, and I learned quickly when in doubt, call your patient advocate. I have no idea why medical staff are so intimidated by these people, but they are. 

I remember one day, a friend of mine (living in the outside world as I called it), came to visit me in the hospital. She saw me have it out with a medical resident about Mattie's inadequate pain control. My friend took me aside and questioned why I had to be so aggressive and why I was getting so upset. That it wasn't good for me. I tried to explain this to her, but I gave up. I gave up because I was living in a system she was unfamiliar with. In a hospital setting the MORE noise you make, the more attention and care you get. I hate to say it, but it is the fact of the matter. It is no place to be timid, patient, and the like. After my friend's visit that day, I wasn't sure what infuriated me more. That Mattie was in pain and I was working in a system that didn't get that, or that my friend was challenging my behavior and viewed me as inappropriate. Needless to say, I knew what I had to do, and I didn't change my style. Funny how it is 8 years after this incident, and I still remember it vividly.  

Tuesday, April 25, 2017

Tuesday, April 25, 2017 -- Mattie died 397 weeks ago today.

Tonight's picture was taken in May of 2006. We were on our way to Pennsylvania to take Mattie to Sesame Street Place. Half way was an amazing aquarium in New Jersey. Across the water you can see the buildings in Philadelphia. Mattie LOVED the aquarium and was very excited about our threesome weekend away. I am so glad we did as much as we did when we did it with Mattie because there were no second chances. 


Quote of the day: The world today doesn't make sense, so why should I paint pictures that do? ~ Picasso

For seven years, I have been teaching a three part art series at Mattie's school to a kindergarten class. Specifically, about the artistic styles of Picasso and Matisse, as well as the rivalry that existed between the artists. A rivalry that inspired each artist to out create the other. As a result, they studied each other's art so diligently that they began adopting aspects of the other's style. 


In 2011, I created this wonderful curriculum that involved power point presentations, hands on activities, and finished with a themed snack. I spent a great deal of time that first year developing this series, as I am NOT an artist, art educator, or better yet an educator of young children! That first year I had almost three hours to work with the students in comparison to the one hour I had today.

In a way I am seeing longitudinal changes on kindergarten aged students. Certainly I am not following the same children over 7 years, but instead I am getting to see how children at the age of 6 learn, process information, and behave from 2011-2017. I am seeing generational changes. That alone has been enlightening and I wish I could say what I am seeing are vast improvements thanks to technology, over programmed schedules, and forced curriculum. However, I am NOT. I am saddened that what I am observing is shortened attention spans, need for immediate gratification, a disinterest in really learning, difficulty with communication, a lack of attending to what others are saying, and the list goes on. 

I questioned at first why we were moving away from my power points this year to showing students a brief video instead. However, given what I saw today, I got all the answers I needed. Yet as a former educator I wonder....... should the educational system change and conform to the demands of its pupils, or is there something to be said for the traditional methodologies that so many of us grew up with as we were learning. I don't have the answers, but I do know that I left the one hour experience today dejected. Mainly because showing kids a video should not be deemed an educational experience. I did not feel like I connected with the students using this format and worse I don't feel like they gained any knowledge about Picasso, like they would have in previous years with my lecturing, discussing, and asking questions.

If you want to see the five minute video I chose to show the class, here it is:

https://www.youtube.com/watch?v=RlNf5XZDcQs


This was Picasso's Woman with a Hat. I had Peter trace the outline of this painting onto table sized pieces of cardboard. I brought in four of them, so that children could work in teams of three to paint in the shapes. After all Picasso was the master of shapes. 

The children aren't shown this painting, until after they color in their cardboard, so as not to influence what they are creating. 

When each of the four tables of students saw the same tracing before them, their respond to me was that the product would all look the same. But of course, it never does. What makes art is the artist, one's feelings... which direct colors chosen and how one sees those colors in space.

Here is one group's Picasso type painting. Notice it looks nothing like the real Picasso nor does it look like any of the other groups below. 

A second group. This group created polka dots by painting their fingers and then dotting the cardboard. That may sound creative and neat, but it was a royal mess. Which may have been fun, but I am not sure got at the purpose of the exercise. 

A third group. This group was serious and intentional about staying in the lines and they talked to one another about who was going to work on each section of the painting. 

This fourth group fascinated me from a behavioral standpoint. In the previous six years I have done this, I never saw a group more focused on mixing colors and doing this directly upon their own art work. There were puddles of paint everywhere, with no focus truly paid to either the assignment or the pleasure of creating beauty. Instead the result was free will to do whatever pleased the child. 

Monday, April 24, 2017

Monday, April 24, 2017

Tonight's picture was taken in May of 2009. Mattie was at the Mattie March which was coordinated by his care community. The notion of the March was to show Mattie that there were many people who loved and supported him and wanted him to get better. It was also a fundraiser to help with Mattie's treatment expenses. Next to Mattie was Charlotte (who Mattie deemed as his girlfriend) and Campbell (another close friend of his from kindergarten). Pushing the wheelchair was Robbie, a child life volunteer from the hospital who Mattie loved. Notice that Mattie was holding a cup in his hands. There wasn't liquid in that cup but caterpillars, which he picked off of the bushes on the track. Those caterpillars came home with us by the way!


Quote of the day: Nothing brings me more happiness than trying to help the most vulnerable people in society. It is a goal and an essential part of my life - a kind of destiny. ~ Princess Diana of Wales

It was another rainy day in DC. In fact, for part of the day Sunny took to the couch. Yet that did not stop him from wanting to take numerous walks. He got plenty of exercise and seems to like the rain. I on the other hand am not wild about it at all. 

In between Sunny walks, it dawned on me that I had to file permits with the Health Department for the Foundation's Walk event. I am so focused on all the other permits, I pushed off the food permit from the Health Department. Today I filled it out and hand delivered to the appropriate folks. So that's done and now awaiting for my other permits from city hall. 

I also visited Mattie's school today to set up for tomorrow's first art session. I have never done the session before using only a five minute video (as requested by the teacher), so the verdict is out on how I will feel about this. But I am trying to be open minded. 

Sunday, April 23, 2017

Sunday, April 23, 2017

Tonight's picture was taken in 2006. It was Mattie's class photo during his first year of preschool. Lana (in pink on the left), Mattie's assistant teacher, posted this photo today on Facebook and shared it with me. Now that I see the photo, I remember it, but since it wasn't an electronic photo, I haven't seen it in years. It is truly hard to know that two people in this photo are dead.... Mattie and his teacher, Margaret (directly behind Mattie). When Mattie was in Margaret's class, I never imagined that I would have a personal experience with childhood cancer and ALS. Margaret and Lana created a beautiful class environment for the kids but also for the parents. Of the other 11 children in Mattie's class, 8 out of the 11 families are involved in the Foundation as volunteers and/or contributors. Amazing no?!


Quote of the day: A Mother's job is to keep her child safe...An Angel Mother's job is to keep her Child's memory alive. ~ Unknown

This beautiful rhododendron is blooming in Mattie's memorial garden outside our deck door in our common's space.

I am proud to say that Peter and I designed this word cloud for the front of our t-shirts this year. We are very grateful to our graphic artist, Kristen Thoman, who has been working with us since 2008. Kristen just understands us and the look we want to accomplish. Kristen helped design our Mattie Miracle logo, our walk logo, and now this word cloud. She does ALL her work for us pro-bono. 

Peter and I wanted to capture all the words that are meaningful to Mattie Miracle in one visual!

We visited my friend Christine today, who is our registration chair of the Walk. We delivered 400 Walk t-shirts to her, and she will take all these shirts and fold them and sort them into the appropriate box that corresponds to its size. A real labor of love. Being the registration chair is no easy feat on the day of the event, because she and her team provide set the tone for our event. If registration goes smoothly, people tend to be happier about participating. 

In tow with us was Sunny. After being such a good boy with the t-shirt drop off, we then took him for a walk. This particular tree made Sunny's day, as he spotted five squirrels in it. He could have sat there all day if we let him!