Saturday, June 8, 2019

Saturday, June 8, 2019

Tonight's picture was taken on May 30, 2008. It was Mattie's last day of kindergarten. In a way, I have book ends of kindergarten photos. As I snapped a photo (practically in the same location of our deck) on the first day of school and repeated the process on the last day of school. I frankly thought I would have many more years of photographs capturing the first and last days of school. However, about a month after this photo was taken, Mattie was diagnosed with cancer. 







Quote of the day: The great thing in this world is not so much where you stand, as in what direction you are moving. ~ Oliver Wendell Holmes

We were on the road at 10am, leaving from Raleigh, NC and headed to Kiawah Island, SC. It was another 5+ hour car trip today. However, I love going from North Carolina to South Carolina, because there are these kitchy signs for 70 miles. Literally the fellow who thought these signs up years ago was brilliant. It keeps passengers busy looking for signs and reading them. Mattie would have absolutely LOVED this. I could just picture him and me looking for these signs while Peter was driving. 

I snapped 28 photos today of ads along the side of the road. I only posted a few here tonight. But know that these signs go on for 70 miles and at the end of the signage you will find yourself at "South of the Border." Which is a little theme park, filled with trinket shops, restaurants, arcades, water parks, and literally something for every member of the family.

 Pedro is the mascot for "South of the Border" and therefore he is on every sign!

I haven't been inside the Reptile Lagoon at "South of the Border," but if Mattie were in tow, it would have been a must see. 

Peter's favorite sign!

At the end of all the road signs, you have arrived at South of the Border. You can't miss this attraction on interstate 95 south. 

We stopped and took a selfie! 

This is what we drove through! At times torrential rain. But I-95 south is only two lanes and NOT at all like I-95 north. Which is congested and very stressful driving. 

Get the picture!? Very wet and very humid. 

By the time we drove onto Kiawah Island, the sun started to come out and we were greeted by a mama deer and her baby! 

Since we did not have lunch today, so went for an early dinner. This is the Turtle Point Golf Course. Inside the club house are lovely restaurants. Restaurants on the island are just for residents and renters. Making this is a very private and special experience. 

Our dinner view. Overlooking the golf course, watching birds and several deer. 

A beautiful dinner companion. 

Our condo, right on the beach. 

After dinner, we walked on the beach. Peter snapped pelicans flying over my head. The Atlantic Ocean down here is warm, maybe like 75 degrees!

The sand is finely packed on Kiawah Island, making it very easy to walk on and bicycle ride. 

Peter made it into the water tonight. Typically on our first day here we are too tired to do much. But today we ventured down to the beach. We met a very lovely couple from Atlanta. They wanted to know if it was our first time here. We said no! They then said, "well then you know how special it is here, making you want to return every year."

I am not sure how I would describe Kiawah Island. Yes it is an island, but it is about 40 miles away from Charleston, which is a quaint and historic city. The Island itself is beautiful, pristine, very natural, and well appointed. It is like visiting a planned golf community (in fact the PGA Championship in 2021 will be held on Kiawah Island), in that the public can't get on this island. You are only given access if you are a property owner or renter. Which makes it unspoiled, very clean, never congested, and peaceful. Coming from DC, it is noteworthy not to hear sirens, see graffiti, no homelessness, no rats and NO traffic. 

Friday, June 7, 2019

Friday, June 7, 2019

Tonight's picture was taken in June of 2008. I remember this day very well. It was Mattie's end of the year kindergarten party. The class went to a park that day. There were activities, pizza, and the opportunity to give the teachers gifts. In this photo, Mattie was sitting between his two closest friends, Charlotte and Campbell. Well according to Mattie, he was going to marry Charlotte, and according to Charlotte, Mattie and Campbell were going to be her college roommates. They were an adorable trio! 



Quote of the day: Courage is the first of human qualities because it is the quality which guarantees all others. ~ Winston Churchill

We hit a lot of traffic driving to Raleigh, NC today. It took us over 5 hours. Some how we seem road weary, or at least I do. Many of the roads in NC look like this! It is beautiful, a lot of greenery and very little congestion. 

This NC shaped shrub greeted us as we crossed the border into the State. I did my best to capture it, but moving at highway speed makes it challenging. 

After we checked into the hotel, we decided to walk a bit around Raleigh. If you look down this road the building in the distance is the State Capital.

This is Raleigh's performing arts center. It is a beautiful complex and literally right next door is Shaw University. 

I love this giant acorn that greets you in front of the Duke Center performing arts complex. It is 10-feet-tall and 8-feet-wide, and is considered a public-art piece saluting the city's nickname as the "City of Trees."

Thursday, June 6, 2019

Thursday, June 6, 2019

Tonight's picture was taken in June of 2006. Peter took Mattie to see a Day out with Thomas. That is Thomas the Tank Engine, from the book and TV series. They went on this adventure with Mattie's preschool buddy Zachary and his dad. Mattie had a great time and I am so happy Zachary's dad captured my two on the train. 


Quote of the day: There is no point treating a depressed person as though she were just feeling sad, saying, ‘There now, hang on, you’ll get over it.’ Sadness is more or less like a head cold – with patience, it passes. Depression is like cancer. ~ Barbara Kingsolver


It is almost three weeks since the Mattie Miracle Walk & Family Festival occurred. I would say starting hours after the Walk is finished, I begin to feel down. As time progresses, the sad and depressed feeling multiplies. This has happened to me with every Walk! So I am more prepared now when it happens, than I certainly was back in 2010. 

I think there is a lot wrapped up in the finality of the Walk. First of which is exhaustion. I would say for a month before the Walk takes place, I am working around the clock. I expend a great deal of energy putting this event together and then it requires an equal amount of effort to put things back in storage and administratively process the Walk. So tiredness contributes to the down feeling. But then there is a void, once the event is over. Not that I don't have other things to do, I do, but the Walk is all encompassing. Also timed with the completion of the Walk is summer vacation. I am beginning to see children out of school and of course hearing families making plans for these summer months. All of these things are truly cumulative for me and yesterday I was in a funk or a state. I am not sure today is much better, but tomorrow we head to South Carolina for a week. 

These photos are the last ones I will be sharing from this year's Walk. We had about 110 posters at the event. I am very grateful that our friend's company, ABC Imaging, prints all our posters for free. These posters are beautiful and we recycle them from year to year. 

This photo of Mattie is part of our Forever Heroes series. We have 70 posters, each featuring the beautiful face of a child who died from cancer. About three years ago, we ran a Facebook campaign asking for families to consider sharing their child'd photo with us. We do not use these beautiful faces to market our Foundation or our services. The photos are used to bring awareness to the fact that 5 children in the USA die a DAY from childhood cancer. Though the Walk is fun, we believe it is our job to also make it meaningful and to share information with the public about the psychosocial impact of the disease on children and families. 

This is what the Forever Heroes posters look like at the Walk. It is an arc of photos, and I was told this year by several of my volunteers that this photo series moved many of our walkers. 

We had 28 posters this year that highlighted our 10th anniversary accomplishments. This is a few of them. We placed them around the track, so walkers couldn't miss them. 

The posters you see on hurdles, were our 10th anniversary posters that I highlighted above. 

This series of posters highlighted our sponsors, our 10th anniversary accomplishments and the event schedule. 

Along the chain link fence, we placed posters that highlight our psychosocial services, our research, as well as posters that highlighted psychosocial facts about childhood cancer. 

Two such posters are below. An awareness poster about the reality of childhood cancer and one about the psychosocial impact of the disease. 

Wednesday, June 5, 2019

Wednesday, June 5, 2019

Tonight's picture was taken in June of 2009. That day, I took Mattie to physical therapy. On the left was Anna, Mattie's physical therapist, and on the right was Linda, Mattie's child life specialist. These women worked VERY hard at getting to know Mattie and meeting his physical and psychosocial needs. Anna was trying to get Mattie to move his legs and work his muscles. If she tried conventional exercises, Mattie would have shut down and that would have been the end of therapy. Instead, Anna made movement fun! I truly believe Mattie made Anna an outstanding physical therapist. Anna was great to begin with, but Mattie pushed her to always think outside the box. She never disappointed. 


Quote of the day: Be not afraid of greatness. Some are born great, some achieve greatness, and others have greatness thrust upon them. ~ William Shakespeare

The following photos from the Mattie Miracle Walk focus on the Raffle. In many ways there are multiple events happening on Walk day... the walk itself, kid activities, the raffle, and our corn hole tournament. 

This year's raffle generated around $5,600. The winner of our Disney basket is the daughter of Mattie's nurse, Norma. Norma and her family come to the Walk each year, and I am so happy that they won 6, one-day Disney park passes!

This is Abby. Abby went to preschool with Mattie. She and her family volunteered the whole day at the Walk. In fact, they were tremendously helpful during Walk clean up. By that point, Peter and I are exhausted, yet we have to pack up everything on site, load it into a moving van, and take it home and unload it. 

Abby won our money tree raffle basket!

This is Adina and her husband Uri. Adina is the Mattie Miracle child life specialist at Children's Hospital at Sinai. Adina's family won the coffee raffle basket! 

What this photo doesn't tell is a story of kindness. Someone else won the Nat's raffle basket on the day of the event. However, when the winner truly looked at the date on the baseball tickets, she realized she wouldn't be in town. So she wanted to give the raffle basket to someone else. She looked around and she saw my friend Kristen and her family. 

This photo captures Kristen and her family accepting the basket. It is a lovely photo, and I am happy I shared the story of kindness behind it, as it makes the acceptance of this raffle basket even more meaningful. 

Tuesday, June 4, 2019

Tuesday, June 4, 2019 -- Mattie died 506 weeks ago today.

Tonight's picture was taken in June of 2007. Mattie was posing in front of an Amish wagon. We took Mattie to a restaurant for traditional Amish fare that night. Outside the restaurant was this wonderful wagon. As Mattie loved anything with wheels, he was naturally intrigued by this vehicle!


Quote of the day: To effectively communicate, we must realize that we are all different in the way we perceive the world and use this understanding as a guide to our communication with others. ~ Tony Robbins


Out of the blue today, I received a text message from Sunny's groomer. We have been seeing her since we got Sunny. So let's say going on three years. She has changed workplaces four times since we have known her, but we have always followed her to her new locations. As I like her, she likes Sunny, and does a good job with him. But today she sent me a quick message saying that due to weight restrictions, she can not work with Sunny. 

Naturally when I first read this very brief message, I interpreted it as a Sunny problem. That there was some sort of policy on dogs being a certain weight, and of course my emotional reaction was anger. But I knew this did not make sense as there are far heavier dogs in this world than Sunny. Because I know the groomer and how much she cares about Sunny, I stepped back from the brief message and decided to ask MORE questions. Fortunately I did, because I deduced that the groomer is pregnant and must not lift heavy things until the baby is born. She has every intention to work with Sunny after maternity leave. 

Now this is where the art of communication comes into play. She most likely did not realize how I would receive her message, and perhaps she never thought I would interpret it the way that I did. My interpretation was that her vet had issues with Sunny's weight. After all Sunny's vet has issues with Sunny's weight, so I transferred my frustration from one vet to another. Thankfully, I went back to what I always rely on, and that is my interpersonal connections. I know this groomer, I know she loves Sunny, and I couldn't believe she would want to give up a long term client. I was correct, and fortunately used that line of reasoning while asking questions today! 

More Mattie Miracle Walk photos. We have many activities for kids at our event. One of which is a magic show. Bob Weiman, Mattie's assistant head of school, is considered the 'magic man.' He learned magic from his dad and Bob teaches magic to elementary students at Mattie's school. In fact, Bob visited Mattie often while he was undergoing cancer treatment. Mattie gravitated to magic, especially since he no longer had gross motor skills, but his fine motor skills were spot on. Bob hosts a magic show every year at the Walk in memory of the connection he had with Mattie. 

We had two moon bounces this year. This one was geared to smaller children!

We also had an inflatable obstacle course! Which is geared toward kids and adults.

This is the second year in a row that we had a Reptiles Alive show. For Mattie's 7th and last birthday, our friends hosted a party for Mattie in their backyard. They invited Reptiles Alive to have a show to entertain the kids. Mattie loved it and held a snake similar to Sun Glow (the snake you see Peter holding). 

Rachael is the educator from Reptiles Alive who has joined us two years in a row. She is fabulous, knowledgeable, approachable, and fun. 

We also have craft tables! This year's craft was design a pipe cleaner critter on a Mattie Miracle pencil. The two children in white t-shirts are Charlotte and Parker. They are our youngest volunteers! They are the grandchildren of my friend, Margaret. Though Margaret is no longer alive, her daughter and grandchildren continue where she left off. We are thrilled to have the opportunity to work with young children and introduce them to the Foundation!  

Monday, June 3, 2019

Monday, June 3, 2019

Tonight's picture was taken in June of 2007. Mattie was five years old and on a weekend trip with us to Lancaster County, PA. We stopped at a store and as you can see there was a statute of a cow outside the door. Trust me you won't be finding such a statute in Washington, DC. Therefore, this caught Mattie's attention. Not to mention the fact that Mattie knew I LOVE Holstein cows. So we posed for a photo! Honestly we went on both of our weekend trips to Pennsylvania, with no expectations. Nonetheless, both trips were fun and memorable. 





Quote of the day: Vulnerability is the birthplace of innovation, creativity and change. ~ Brené Brown

I have been working for two days straight on creating this year's Mattie Miracle Walk video. It starts first with having great photos, organizing them, and figuring out what messages I want to convey. 

In the beginning of the Foundation's history we relied on friends to snap photos at the Walk. Though well intentioned, it was hard to capture the event if you are not a professional. 

I go over with Herman, our photographer, ahead of time the things I want captured at our event and since he has been working with us for 7 years now, he knows our event well. He also knows me! How did we find Herman? Through Mattie's hospital, as Herman covers many MedStar Georgetown events. 

I invite you to check out this year's 10th Anniversary Walk Video. I think it captures the energy at the event and the amazing people who helped us raise money, get people to attend the Walk, and volunteer! It may come as no surprise to my loyal readers that the music I chose for this year's video was ABBA's Dancing Queen. In fact, we start every Walk with Dancing Queen. I realize most people may not notice, nor do they understand why. But Mattie did many of his physical therapy sessions with Dancing Queen in the background. I mean therapy sessions literally right in the middle of the hospital hallways. The music was so loud, that people would come out of their offices and want to know what was going on. When they saw Mattie, they smiled and would remain in the hallway to watch Mattie do his exercises. In memory of Mattie, I felt this song was appropriate!

Walk Video: https://youtu.be/6A24m1NqHMA

Sunday, June 2, 2019

Sunday, June 2, 2019

Tonight's picture was taken in June of 2007. Mattie was attending his friend's super hero birthday party! Mattie dressed up as Super Man. Ironically Mattie received this outfit as a gift in April of that year. Mattie had a great time at the party and was truly happy to be included. It was wonderful watching Mattie learn how to be a good friend. I remember this party as if it were yesterday. 









Quote of the day: Memories are the treasures that we keep locked deep within the storehouse of our souls, to keep our hearts warm when we are lonely. ~ Becky Aligada


Other than walking Sunny today, I haven't left my computer. I am now working on creating of video of this year's Foundation Walk. I have lost track of how many videos I have created for the Foundation. Certainly the more you do, the easier it is, yet it still takes time. I am still not done with it! 

Tonight's Mattie Miracle Walk photos highlight the surprise Flash Mob we had at the event. What is a flash mob? It is a large public gathering at which people perform an unusual or seemingly random act and then disperse. 

We want to thank Susan Thompson, the wife of one of our board members, and her company Take the Stage Performance Company for making this possible.

I had the idea of doing a Flash Mob, because I thought it would be something different to highlight our 10th anniversary. But I wasn't sure how to execute it. Fortunately I know Susan and she got her team of kids together. Susan choreographed the dance to ABBA's song, Mamma Mia, and the kids did a great job. 

People loved their energy and in fact, several of our Walk participants jumped in to dance along. 

Literally there was a flash mob on either side of the track! Walkers kept going, but that did not stop the  performers. We love seeing the next generation actively involved in our Walk!








Here is a short video I took of the Flash Mob. I was across the field when it started, so I ran over to catch a part of it!