Saturday, May 9, 2015

Saturday, May 9, 2015

Tonight's picture was taken in May of 2009. Mattie made me a special mother's day gift while he was in the hospital. In fact, he spent several hours in the child life playroom with his art therapists designing this creation. What you can't see below the tissue paper flowers was a beautiful red pottery vase that Mattie created on a potter's wheel in clinic for me weeks before. Mattie wanted to surprise me with this gift and therefore I was banned from the playroom that day while he was creating. Once he was done, he came back to his hospital room and presented me with this mother's day surprise. To this day, this vase with tissue paper flowers can be found sitting on display in our living room. 


Quote of the day: A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts. ~ Washington Irving

Our day started bright and early as we wanted to be on the road, headed back to Washington, DC, so we could pick up our Foundation's Walk posters before 3:30pm, when the print shop closed. I also knew that it was important to review the posters to make sure they were printed correctly so that if they weren't I would have a few days to rectify the problem. I am glad I actually did that today!

When we arrived home, we were greeted with all these boxes in our front hallway. Thankfully Maria, our friend and huge Mattie Miracle supporter, who works in our complex, let me know while I was away that we received a TON of packages. Maria was going to have someone from our complex come with a cart and deliver them to our unit. Maria did us a MAJOR favor, because I had no idea the extent of how many packages she was referring to until I actually ran right into them as we entered our doorway. After a full day of presenting yesterday and traveling today, the thought of carrying all of these heavy boxes from the front deck of our complex to our unit was unbearable. We are too exhausted. So Maria's efforts are greatly appreciated! 

Here is another photo of all the boxes. In any case, Peter and I processed through the items in the boxes for the Walk and I was able to dig out of the emails I received over the last two days. I am happy to report that the current Walk fundraising grand total is over $50,000! 

Friday, May 8, 2015

Friday, May 8, 2015

Tonight's picture was taken in May of 2006 at Sesame Place in Pennsylvania. The park is perfect for the child who loves Sesame Street. Which was right up Mattie's alley. He loved Elmo back then and seeing Elmo characters walking around the park brought a smile to his face. There were parades, all sorts of activities, and water adventures. Which was what Mattie gravitated to that day!

Quote of the day: Never worry about numbers. Help one person at a time, and always start with the person nearest you. ~ Mother Teresa

Peter and I attended the Association of Pediatric Hematology/Oncology Nurses Conference (Metro NY, Long Island, & New Jersey Chapters) today. We sat through sessions from 8am until 3pm, when our session began. 


There were also vendors at the conference. I fell in love with one who was a jeweler. She used to be a podiatrist, but then she became a mom and started making jewelry. Her jewelry is beautiful. I bought a moon shaped pendant today, and on it was written... I love you to the moon and back. This is exactly what Mattie and I used to say to each other. In addition, dangling from the moon was the letter M. Why? It turns out the artist has children that all have names that start with the letter M. It works for me, because to me that M is for Mattie!

Peter snapped a photo of the conference room within the Baruch College. 

We delivered a 90 minute presentation today that included 50 power point slides. Here is a copy of the agenda we covered. I opened up the session with a 15 minute overview of "who was Mattie Brown." This included showing a four minute video of Mattie.

However before I did that I asked for a show of hands in the audience of the number of mothers present in the room. The reason I asked this was because 98.9% of the room was comprised of women. So my hunch was a majority of them were going to be moms, and I was correct. I wanted to appeal to these women NOT only as professionals but as women who had children. Because I wanted them to understand that Peter and I created a foundation because of Mattie, his cancer battle, the love we have for him and our desire to keep his memory alive. As I told them today, 13 years ago I had a son named Mattie and when any woman has a child, the last thing she thinks of is.... my child is going to get cancer and worse die. It was my hope that one day if I was going to be before a large audience of people talking about Mattie, it would be for one of his great accomplishments. Not due to his battle with cancer and death. Yet because of his death, as his mom I feel compelled to keep his memory alive and that is one of my life's mission.  

Despite the fact that Peter and I have been working around the clock, we feel it is important to spread the Foundation message. Especially as it relates to our National standards project. So even though this conference is a week before the Walk, we made the huge effort to come to New York. 

My life time friend Karen and her mom attended our session and Karen snapped a photo of us with several members of the conference planning committee.... Jeanne Greenfield, Debbie Giugliano, and Cara Giannillo.

Peter and I met all three of these wonderful women last year in Columbus, Ohio at the APHOES conference (Association of Pediatric Hematology Oncology Educational Specialists). It was within this conference that Debbie mentioned today's speaking engagement to me. 

After the conference, we went out to a lovely dinner with Karen and her mom Naomi! We had wonderful conversation, food, and had a chance to reconnect. I am glad we were able to do that since they were the highlight of coming to New York. For me New York is not what it once was, and I used to love the city. Now I find it an extremely over crowded city, challenging to navigate given the attitudes of some of the people, and the sights on the streets are not only questionable but down right insulting to one's moral fiber.  

This was Times Square
this evening. It was a sea of people. But it isn't just Times Square that is like this, the sidewalks are packed throughout the city. If you stop moving, you are going to run over. 

I have lived in a city for many years now, from Boston to Washington, DC. But these are very different cities from New York. New York has it advantages for sure and of course I am not ever going to knock it for its creativity and culture. But I have been transformed by cancer and this transformation has left me needing more open spaces, tranquility, and peace in order to survive. 

The lights of Times Square

People and lights






















I first downloaded a photo of the "topless painted women" in the middle of Times Square and posted it to the blog. But I actually find them so offensive, that I removed the photo, and now just have a link to them through a NY Post article. I couldn't get over my eyes tonight while walking through Times Square. Peter was busy taking photos of the buildings and lights and while he was doing this, I of course am intrigued by people so I was scanning the streets. I immediately saw painted American Flag women as well as violent costume characters (that is what they are called) roaming the streets. They all are there hustling people to pose with them for photos and to make money. Honestly some people were posing their children next to these topless women and snapping photos! I came back to the hotel beyond disturbed, perplexed, and just agitated. 

http://nypost.com/2015/04/22/topless-women-posing-with-underage-kids-in-times-square/

Thursday, May 7, 2015

Thursday, May 7, 2015

Tonight's picture was taken in May of 2006. We were driving to Pennsylvania that weekend on our way to Sesame Street Place. Along our journey we stopped in New Jersey at a wonderful aquarium. I snapped this photo of Mattie and Peter after our visit inside. It was a true weekend adventure for the three of us. We had done many adventures with family members, but this was a first with just the three of us and it was noteworthy. Noteworthy because prior to cancer, we had overcome many other developmental issues with Mattie. But I strongly believe in getting outside support early on and with the help of speech and occupational therapy, by the time Mattie entered kindergarten most people would never have known there were ever any underlying issues. Of course when cancer entered our lives several of them came right back and made treatment very complex, especially when working with physicians who do not take the time to understand the full child and the nature of the issues at hand. 

Quote of the day: Nobody made a greater mistake than he who did nothing because he could only do a little. ~ Edmund Burke

Today Peter and I are packing up and are headed to New York City for two days. Tomorrow we have been invited to give a 90 minute keynote session at the Association of Pediatric Hematology/Oncology Nurses (Metro New York, Long Island & New Jersey Chapters) conference. 

We met the president of the Long Island chapter, Debbie Guigliano, last March when we did a key note presentation at the Association of Pediatric Hematology Oncology Educational Specialists Conference. During that conference Debbie mentioned that she wanted to stay in touch and would like us to come to her conference! It has now become a reality. Tomorrow I will be writing from NY!

Wednesday, May 6, 2015

Wednesday, May 6, 2015

Tonight's picture was taken in May of 2008, only two months before Mattie was diagnosed with cancer. It was grandparents day at Mattie's school and I happened to be one of the lucky parents who got to volunteer on that occasion. I am so happy I did because I got to experience the day and Mattie showing my parents around his classroom and school. 

Quote of the day: No one has ever looked at Matisse's paintings more carefully than I; and no one has looked at mine more carefully than he. ~ Pablo Picasso


Today was may last kindergarten art session (of a three part series) at Mattie's school. After doing this series for five years now, I know that the first session is always an adjustment and it gets better over time. The children are not used to learning in the format that I present the content to them. But at this age, they catch on quickly and learn quickly. In all reality I am asking them to sit through a mini lecture that involves power point slides. This would be how I would conduct my graduate classes, but I can't imagine most elementary classes run this way. So they are not used to focusing for this period of time or in this manner. Yet what I find intriguing is that their minds absorb facts and they don't only absorb them, they retain them! Better than most of my college students did. I could teach a college class one week and come back the next week and ask them to recap what we did the week before and maybe 10% could. When you ask a kindergarten student what you covered the week before, I would say 90% or more get it! I was so impressed today with the facts they listed off about Matisse and Picasso. They were able to tell me.....................

 Picasso -- he was bold, passionate, scruffy, and impulsive.

1. Painted from IMAGINATION.

2. Was the Master of Drawing and Shapes.

3. A founder of cubism (painting shapes and objects in an abstract 

manner - instead of depicting objects from one viewpoint, the artist depicts the 

subject from multiple viewpoints to represent it in greater context) 

Matisse -- he was reserved, aloof, dapper, and cultured.

1. Painted from NATURE.

2. Was the Master of Color.

3. A founder of fauvism (the use of strong color that may not be representational or realistic in nature).

The third session focused upon the friendship and rivalry between Picasso and Matisse. I first had to explain what rivalry meant. They did not know that word, but they clearly understood the notion of competition! Yet it did not make sense how you could be friends with someone and yet be jealous of them and want to compete with them! Isn't that a beautiful notion?! The beauty of being 6! Yet as I explained the lives of the artists and then showed several pieces of their art, side by side they could see how Picasso and Matisse really tried in many ways to almost copy each other's style. As Picasso's quote points out tonight..... no one studied Matisse's works more carefully than he! With that, Picasso integrated color and more fluidity into his works, while Matisse learned to incorporate shapes into his paintings. None of these artists would have integrated these additions if it wasn't for their rivalry between them, and if they both weren't striving to achieve a number one status over the other. Yet it was most likely this rivalry which forced them to be even greater artists than they were and it was well documented that despite their rivalry when Matisse died (he was 12 years old than Picasso), Picasso truly grieved this loss. Since he felt that no one quite understood him or the depths of his paintings like Matisse.  

Since both Picasso and Matisse were well known for painting a still life, that was the subject matter I had the children paint today on their own canvases. Of course this doesn't magically happen! I went into the classroom yesterday afternoon and set up the display of flowers, tablecloth, and fruit. Along with each child's table with a canvas, paint brushes, and paint trays. 

The instructions we gave them was that they could paint the still life on display in the classroom in a Matisse or Picasso type style. Or of course combine them, like the art work we had studied today. The children were very concerned that there was a right way to do this, or "should" they do the painting a particular way? We assured them there were NO SHOULD'S! That so much of what they saw in front of them was up to their interpretation, as we saw with Matisse and Picasso, who could paint the same subject matter and yet the paintings would look totally different from one another. 

Check out some of the finished products below. The children were all looking at a blue vase filled with sunflowers and other yellow flowers, sitting on top of a powder blue tablecloth. Along side the vase were oranges, apples, and bananas. As you can see each one is a masterpiece in its own right! 

Tuesday, May 5, 2015

Tuesday, May 5, 2015 -- Mattie died 295 weeks ago today.

Tonight's picture was taken in May of 2008. What Mattie was holding in his hand was one of our two jars we had for tent moth caterpillars. Mattie would bring them home from school in a cup. He literally would find them on the playground and insisted on transporting them home in the car. He knew I hated bugs or anything that crawled. Yet I knew he had a fascination with the whole metamorphosis process. Therefore, in order to embrace his  curiosity I dedicated jars for him to experiment with and we would trap the caterpillars inside with saran wrap and poke air holes in the wrap. Needless to say we perfected the technique year after year, and even learned what to feed these creatures. They despise maple leaves and only like eating oak! They also happen to be messy, which I suppose makes sense if you are constantly eating. All I know is I was always cleaning out the jar! However, once they spun their cocoons, about a week later, out would pop moths and with that we always had moth releasing ceremonies on our deck. 


Quote of the day: Donors don’t give to institutions. They invest in ideas and people in whom they believe. ~ G.T. Smith


Tonight's quote resonates with me! It is ironic though because Mattie Miracle has donors who thankfully sustain and enable us to do the work that we do, and yet the Foundation in turn does not keep any of this money. Instead, we take this money and wisely contribute it to people and to places like Georgetown University Hospital which can assist children with cancer. So when I look at tonight's quote, I understand it wholeheartedly. From the perspective of the donor as well as the fundraiser. 

As I say often.... I do NOT donate to institutions. In fact, institutions really do not mean much to me. It is the people within them that matter. This is who I believe must be invested in, and this maybe why at the core our donations to Georgetown are very personal. I know our donations are overseen by Linda, Mattie's child life specialist. Considering I know the effort it takes to raise this money and the support community behind us helping to generate it, I am very judicious about where and how this money is spent. 

This afternoon, I took a break from my usual Walk work routine and headed to Mattie's school. I had to set up for my last kindergarten art class session scheduled for tomorrow morning. In addition, at 4pm, I was scheduled to meet with the 5th grade girl scout troop and their leaders. This is the same troop I met with in April and introduced them to Mattie Miracle with a power point presentation. The girls asked me to visit today and bring the Mattie Miracle banner to school for their podcast (basically the kids were taped and this session will broadcast to the school on Friday). They wrote a script for their performance which explained who Mattie was, what the Foundation does, information about the Walk, the fact that they were standing in front of Mattie's tree, and that May 15th would be dress orange day at school in honor of Mattie. This is something the troop got school approval for from Bob Weiman (aka, the Magic Man, the head of the lower school, who taught Mattie magic) which is lovely, because typically the children wear a uniform each day. 

It was an experience watching about 12 girls give this broadcast performance and deliver this message. Each one had a part to play, either delivering lines or holding up signs to emphasize what was being said! For the most part these children did not know Mattie and I would have to say that was hard for me to grapple with, but then again, I wonder do Mattie's friends really remember him too? It is hard to say because they were so young when they knew him and their memories were really forming back then. So it is quite possible they do not remember him very well at all. Taken in total, somehow that is a sad prospect because the younger generation really is not personally touched by Mattie. They maybe through their parents, but they themselves are not truly impacted by Mattie. Somehow that realization hit me today. 

I got to Mattie's school early this afternoon, because I wanted to park in the correct location to ensure that I wouldn't have to walk too far with all the art supplies I had to carry into the classroom. Where that left me was parking right next to the playground. Being that it was after school, there were children running all over the place and their caregivers weren't far behind. I remember being one of those parents and it was a surreal feeling, almost like being on the outside looking in! I knew that world and yet I also knew I was no longer a part of it. A very sobering feeling which can leave you mad and angry, sad and depressed, or all of the above. Yet somehow I have to channel all those feelings somewhere and be able to interact with the world, because there is one thing someone who is grieving quickly learns...... the world doesn't stop for you and people quickly forget or have patience for your feelings regarding a loss. 

Monday, May 4, 2015

Monday, May 4, 2015

Tonight's picture was taken in May of 2008, on Grandparents Day at Mattie's school. This was a special occasion at the school in which the children got dressed up, there was a concert for the grandparents, and classrooms were opened up to display what the children were learning and creating all year long. Thankfully I volunteered to work on campus that day, so I got to experience that moment in time. The only moment we were lucky to have together, because that was our one and only grandparents day. Pictured next to Mattie is Larry Jenney. Larry was Mattie's assistant teacher. Larry understood and appreciated all of Mattie's gifts and he shared them with me early on. I was very impressed with how perceptive Larry was regarding Mattie, especially since he only spent a half day with him each school day. Larry is still very involved with the Foundation and is instrumental in our Foundation Walk every year. In fact, he helps me secure the majority of our volunteers to run the Walk each year. He is a special teacher and person to our family for many reasons.  

Quote of the day: Where there is charity and wisdom, there is neither fear nor ignorance. ~ Francis of Assisi


Our Walk Facts of the Day:

Total Funds Raised so far: $44,844
17 Walk Teams
Walk teams have raised in total so far: $11,312
On-line Raffle has raised so far: $1,650


Our Top Walk Teams:

RCC Moms Rock ($3,183)
The Book Club ($2,502)
Blessed Sacrament Bullfrogs ($1,412)
Team Tilch ($1,343)
Teen Team -- Team Heart ($1,081)


I leave you tonight with this video that went viral today on Facebook and Twitter. It was launched by Truth 365, a nonprofit childhood cancer organization. It is ONLY 4 minutes long. The video was shown in Times Square and the way it was done was clever. What caught my attention the reactions to the video! It wasn't what bystanders were expecting! They were expecting something humorous! I won't say more, look for yourself. 

Get Wind of This...12-year-old Kylie Myers' Broadway Debut:
https://www.youtube.com/watch?feature=youtu.be&v=A5fKD02bFtc&app=desktop

Sunday, May 3, 2015

Sunday, May 3, 2015

Tonight's picture was taken in May of 2007. Mattie was having a playdate with his very good friend Zachary from preschool. These two friends were basically inseparable. They gravitated to each other from the very first day of school and remained close to each other even after they both went to different elementary schools. In fact, Zachary visited Mattie in and out of the hospital. As you can see from this photo, Mattie and Zachary had a Thomas train set running from one bedroom clear across the hallway to the next room. They both loved trains and could play with them for hours. When they got tired actually playing with them, they used to pretend they were trains, which was a riot a watch!


Quote of the day: It is one of the most beautiful compensations of life that no person can sincerely try to help another without helping themselves. ~ Ralph Waldo Emerson

Peter and I went to Mattie's school today where the Walk will be held. In tow with us were the sample plastic cups we ordered. I have been searching high and low for the right cups that will fit in this chain link fence. Not just any cup will do! Most solo cups are too big and therefore can't be slotted through! I found these wonderful cups through a restaurant distributor. The great part about this is that they come in over 20 colors. Which is fabulous, because I need a different color cup for every one of our teams. At the moment we have 16 walk teams! 

I have always wanted to show walk progress around the track, but there is no score board or other visual. So it came to me one day. Why not use the fence! I thought of transforming the chain link into a score board using colorful cups. As team members walk a lap, each member can earn a cup to place in the challenge wall. The goal is to fill a portion of the designated wall by the time the event is over. This will hopefully encourage motivation and energy to walk. Also providing incentives, some competition, and having a DJ, we are hoping will also help! In any case, I am so happy we resolved the cup issue today. Meanwhile Peter has been estimating cups and how many to order for weeks now. This is no easy task to undertake and clearly once I order these cups, my goal is to recycle them from year to year. 

Saturday, May 2, 2015

Saturday, May 2, 2015

Tonight's picture was taken in May of 2007. Mattie was five years old and in kindergarten. It was spring and we were enjoying time outside on our deck. We were a family who loved our deck, all of us... including Patches. All four of us would spend time together out there and each of us had a chair at the table, YES Patches too! She helped herself. 


Quote of the day: You will never “find” time for anything. If you want time, you must make it. ~ Charles Bruxton

Today was another whirlwind, of working on Foundation walk posters, dealing with other Walk issues, and then also working on a Power Point presentation for next week's keynote presentation in New York City. This presentation is 90 minutes long, so this is substantial and requires brain power to put together. Brain power which I really do not have right now. I started this calendar year tired from writing book chapters in the summer of 2014, and I have yet to be able to catch my breath. This time of year is by far the worst with fundraising and planning the Walk. 

In addition to all this work today, I took a break and finished planting our deck with Peter!

I am signing off, but before I do I wanted to share another deck photo! All around us while we were planting were birds. We even had a cardinal visit with us this evening. Which was a lovely and special sighting. Not only do I view the cardinal as a symbolic sighting, but I remember how much Mattie loved cardinals because of their bright red color.