Saturday, April 23, 2016

Saturday, April 23, 2016

Tonight's picture was taken in April of 2004. Mattie was two years old. That weekend we took him to the Reston Zoo. A favorite of Mattie's because it was small, not crowded, and very hands on! As you can see I was intrigued by both Peter and Mattie that day. Peter was feeding the sheep and Mattie was staring at the goats. Both boys glued to and engaged with the animal of their own choosing. 


Quote of the day: My garden is my most beautiful masterpiece. ~  Claude Monet

We divided and conquered today! We were able to do this because we went to Home Depot last evening and got ALL the materials we needed to work today. Which included plants and wood! Peter and I worked on two different projects. 

Peter has been creating schematics to build Corn Hole boards for weeks. This year at the Foundation Walk we are having a corn hole tournament. What is corn hole? 

Corn hole is like a bean bag toss. Specifically it is an American lawn game in which players take turns throwing bags of corn (or a bean bag) at a raised platform with a hole in the far end. A bag in the hole scores 3 points, while one on the platform scores 1 point. Corn hole tournaments are very popular now and we are trying to add this new activity to our event to raise additional funds, but also to give teens, young adults, and adults a lively activity. The prize for winning our tournament is an iPad. 

Designing the corn hole boards (Peter made SIX, because people are playing simultaneously, so you can't just have one or two boards) isn't as easy as it may seem. There are regulations one has to follow in terms of dimensions. We debated on buying the boards versus making them. Purchasing them would cost us close to $800. Though making them is labor intensive, we opted to do this. In addition, a girl scout troop at Mattie's school was looking for a building project for their bronze award. So next weekend, we will hand over the corn hole boards to them and they will finish assembling, painting and decorating them. So it truly is a labor of love for the Foundation. 

It took Peter over 6 hours today. He had drills, saws, and all sorts of power tools out. We had sawdust everywhere. In the morning it was pouring, but fortunately he was able to work on our balcony. 

While Peter was on one end of our home, I was on the other. I was determined to plant our deck space. That is no easy feat and typically I do it with Peter. This is the before photo!

Here is the finished product. 

Another view of our garden! 

What the deck now looks like from Mattie's Room!

This evening I picked up 25 peachy roses, each with a water tube. I then wrapped and bowed each flower individually. Why the flowers?

Tomorrow "Take the Stage," a performing company featuring local children is hosting a benefit musical for Mattie Miracle. Peter and I will be attending and after the show, I want to give each of the 25 performers a rose! We appreciate their efforts and energy they are bringing to this musical, as they try to help us raise funds for the psychosocial needs of children with cancer. 

Friday, April 22, 2016

Friday, April 22, 2016

Tonight's picture was taken in April of 2006. Mattie was four years old and was outside with me on our deck. I was out there watering our plants. But if you look closely, look who was also soaked! Mattie loved going outside and always requested to be sprayed with the hose. So I literally as watering the plants and Mattie! 


Quote of the day: Spring drew on...and a greenness grew over those brown beds, which, freshening daily, suggested the thought that Hope traversed them at night, and left each morning brighter traces of her steps. ~ Charlotte Brontë

I went to Mattie's school today to bring supplies for my art lecture series starting next week. While there I of course went to visit and clean up Mattie's Memorial Yellow Wood tree. For his birthday, I wrapped a beautiful yellow butterfly around Mattie's tree. But with all the intense winds we had, the butterfly was torn to shreds. So I removed it from the tree and just left the pretty yellow bow. But what immediately caught my attention were the tulips around the tree.

Every Fall we plant bulbs around the tree. We plant crocus, daffodil, and tulip bulbs. The beauty of this is all three flowers bloom at different times. So literally the tree has flowers around it for a good part of the Spring. There are many wonderful trees on the campus, but Mattie's tree is the only one decorated and with flowers around its base. 

A close up of the tulips! Somehow the photo doesn't do these flowers justice. They are a vibrant red and purple! It caught my attention from over 100 feet away, as I was walking toward the tree from the parking lot. 

It is a very surreal feeling to be visiting the tree and to be surrounded by kindergarten students playing on the playground. In my mind, Mattie will always be a kindergarten student. Despite the fact that he would be in 8th grade now if he were alive. In some ways, I am caught in time, and in my time zone Mattie is forever 7. As the children were running and playing all around me today, it left me wondering of course why did Mattie get cancer and die? The profound feelings Peter and I live with, parents of healthy children can't possible grasp. Which is a good thing, but none the less, it does add to the isolation. For the children running passed me, this tree is just a pretty tree, whereas to me, it is much more. Yet we both co-exist and experience the same tree, but maybe in different ways. 

Thursday, April 21, 2016

Thursday, April 21, 2016

Tonight's picture was taken in April of 2007. That weekend we drove to Luray, VA to explore Luray Caverns with Mattie. The first time I went to such a cave was with Peter in college. We had Howe Caverns near us in upstate NY. I thought they were memorable and daunting at the same time and I was a young adult. I wasn't sure how Mattie was going to handle a cavern at age 5. But as you can see he was leading the way. In this respect Mattie was a lot like Peter. They both like adventure and new experiences! 



Quote of the day: So he tasted the deep pain that is reserved only for the strong, just as he had tasted for a little while the deep happiness. ~ F. Scott Fitzgerald

It was another busy day! In the midst of juggling many Foundation things, I have now started staging and organizing the raffle baskets. We have nine wonderful baskets this year and they really do take months to solicit items and pull them together. Hopefully in a week or so I will have photos of the finished products. 

Anyone can support our raffle. Tickets are only $5 each and can be purchased on line:
https://mmcf.dojiggy.com/ng/index.cfm/aa27806/regCatalog/products/?p=ad142620

Wednesday, April 20, 2016

Wednesday, April 20, 2016

Tonight's picture was taken in April of 2007. Mattie was still in preschool and one of the things Mattie absolutely LOVED was creating with cardboard boxes. In fact, this skill became a great therapy tool when battling cancer. Mattie transformed all sorts of packing boxes the hospital received and these projects would keep us all busy and engaged. Some of the finished products were truly incredible such as a haunted house, an apartment complex with a pulley elevator, and a Christmas house!


Quote of the day: Instead of saying “I don’t have time” try saying “it’s not a priority,” and see how that feels. Often, that’s a perfectly adequate explanation. I have time to iron my sheets, I just don’t want to. But other things are harder. Try it: “I’m not going to edit your résumé, sweetie, because it’s not a priority.” “I don’t go to the doctor because my health is not a priority.” If these phrases don’t sit well, that’s the point. Changing our language reminds us that time is a choice. If we don’t like how we’re spending an hour, we can choose differently. ~ Wall Street Journal


Tonight's quote captured my attention because what I said ALL DAY LONG was I don't have enough time! I truly believe there isn't enough time in the day to do everything I need to do. Perhaps it is a matter of making priorities, but the thing is when it comes to the Foundation everything is a priority! Especially at this time of year, Walk season. 

I remember someone once saying to me that hosting the Walk has to get easier and easier each year. Mainly because I have done it before, so it becomes routinized. I would say for the most part that isn't the case! Yes there are some consistent things from year to year, but with each year new challenges present themselves. Of course not having a staff to share the tasks with me, also complicates matters. 

Now in addition to Walk plans, we are also traveling for the Foundation and my Spring art sessions at Mattie's school begin next week. I honestly wanted to say.... I DON'T HAVE TIME for this. But I rarely use that line on other people, though I internally have it streaming in my head. Teaching the three art sessions is actually time consuming because I have to buy all the materials, set up for each session, run each session, make snacks, and then also clean up the classroom each time. So it isn't like I just breeze in and out for an hour at a time! 

This week, Peter and I started a walk routine when Peter gets home from work. Again this is something I would make time for normally. But if I don't make time for some things, I am quite certain life will pass me by as I am glued to the computer and working on the Foundation. Tonight's quote made me pause, as it may have done this for you too! I am quite sure there is something we all feel we need to do a better job at making time for and yet haven't! How do we change that?!

Tuesday, April 19, 2016

Tuesday, April 19, 2016  -- Mattie died 344 weeks ago today.

Tonight's picture was taken in April of 2008. Only three months before Mattie developed cancer. Hard to believe really when you look at this photo. In any case, this was one of Mattie's favorite past times..... playing with the hose and water. I remember the first summer we took him to the beaches of North Carolina. Mattie wanted NOTHING to do with the sand and surf. Instead, he wanted to hang out on the deck and play with the hose. At the time, I wasn't too thrilled with his decision, but he grew to love the beach after exposure to the ocean a few times. In this particular photo, Mattie wasn't out on our deck watering the plants, but instead getting soaked!


Quote of the day: Each day holds a surprise. But only if we expect it can we see, hear, or feel it when it comes to us. Let's not be afraid to receive each day's surprise, whether it comes to us as sorrow or as joy It will open a new place in our hearts, a place where we can welcome new friends and celebrate more fully our shared humanity. ~ Henri Nouwen

Today we had a phone call with the American Cancer Society (ACS). How we got connected with ACS isn't something I am going to share on the blog. But there is definitely a story there. None the less, a few weeks ago, we asked ACS to stand up with us and make psychosocial care a priority. Specifically we asked them to consider funding a follow up symposium we would like to host on Capitol Hill in the Fall. Talk about wonderful surprises as Nouwen mentioned in his quote..... we learned today that ACS is willing to give us a $12,500 grant to host our event. For Mattie Miracle this is a huge amount of money, because I have learned to do A LOT with NOTHING! 

A follow up symposium is crucial, to help launch the next phase of the Standards project... IMPLEMENTATION. Our first symposium occurred on March 20, 2012, and was 8 hours long. It was greeted with MASSIVE enthusiasm, with over 85 attendees (doctors, psychologists, social workers, counselors, physical and occupational therapists, child life, and parent advocates) from 12 different States. Along with congressional staffers and members in attendance. The core research team at the symposium loved Mattie Miracle's vision to create Standards of psychosocial care. This vision was appreciated so much that after the event, Dr. Lori Wiener (NCI/NIH) emailed me and asked whether we could consider funding a think tank at a National conference to start brainstorming how such a vision could become a reality. In three years the impossible became possible. So though phase three (implementation) is very daunting, I can't forget how we navigated through phase 1 (creating the standards) and now phase 2 (getting them endorsed by professional organizations). This is an historic feat! 

We need to give this second symposium a great deal of thought but having funding to help with the cost of bringing in the right leadership to help direct this conversation is crucial. So I am thankful to ACS for joining us and giving psychosocial care a voice at the cancer table of care. 

Monday, April 18, 2016

Monday, April 18, 2016

Tonight's picture was taken in January of 2003. Mattie was only 9 months old, but fully on. That day we went outside in our commons area so Mattie could scoot around in his "tot wheels." In essence it was a walker. He sat in it, his feet touched the ground and the walker had wheels. Mattie did not toddle around, instead I would say he flew on wheels. 

Peter always joked with me! He said that you could always tell where I was in Mattie's photos since Mattie's eyes typical tracked me. Mattie kept a close bead on me. This maybe hard to see in this photo, but thanks to our Facebook friend, Tim Beck, you will see exactly what Peter meant below. 


Quote of the day: You don't make a photograph just with a camera. You bring to the act of photography all the pictures you have seen, the books you have read, the music you have heard, the people you have loved. ~  Ansel Adams

When Tim posted the photo above on my Facebook page (as I typically do), I commented on it.  Tim captures photos he sees on the blog and transforms them. When Tim shares them with me on Facebook, I always pause and try to remember when the photo was taken and the context. When I told Tim what Peter used to say about Mattie's eyes, Tim decided to blow up the photo. It maybe hard to see here, but in the upper left hand corner, you will see my reflection. Which makes sense, since Peter was snapping the photo directly in front of Mattie and I was standing off to the side! 

This afternoon traffic was horrific in front of our home. I did not know why, until Peter and I took a walk later in the day. We found a large filming crew in front of the Watergate buildings. 

It was close to 80 degrees today and humid. It felt like summer. As we walked through Washington Harbor, along the Potomac River, EVERYONE was out and about. I mean everyone and everything...... bicycles, dogs, you name it! It was like people came out of hibernation. 

This was my favorite sight along our walk.... a mama duck with 14 ducklings! Mattie would have gotten very excited over this sighting, because whenever he saw a duck with her ducklings, he would tell me it reminded him of us. 

The beauty of pansies!

Sunday, April 17, 2016

Sunday, April 17, 2016

Tonight's picture was taken in April of 2009. What I love about this photo was the line up of cars in Mattie's food container. From an early age Mattie always loved having a toy of some kind in his hands. A car or truck was always with us. Linus had his security blanket in the Peanuts cartoon and Mattie had his vehicles. Many times we engaged Mattie in play in order to distract him enough to eat. Sometimes it worked and other times it was a losing battle. But I learned early on in the cancer battle..... I wasn't going to make nutrition an issue. Mattie did not need that pressure (despite all the pressure I received from the dietitian -- which was a riot because even well I wouldn't eat hospital food, much less being on chemo like Mattie). We tried to follow Mattie's needs and ques and I found that was what ideally worked for him. 


Quote of the day: A life isn't significant except for its impact on other lives. ~ Jackie Robinson

It is a little disorienting for me to be doing so much traveling. Within the last two weeks, we have covered Florida to Massachusetts. We left Boston this afternoon, and as you can see it was a very clear flying day. My favorite kind of day, because you can see the coastline throughout the entire hour long flight. 

When we got home we hit the ground running with grocery shopping, cleaning up our deck area, and processing Foundation Walk donations and addressing other planning issues.