Sunday, May 24, 2020

Sunday, May 24, 2020

Tonight's picture was taken in May of 2004. Mattie was two years old and we took him that weekend to the National Arboretum in Washington, DC. Outside the visitor's center, is a lovely pond filled with koi. They even sell food to feed the fish, which of course Mattie was eager to do! Well maybe not do himself, but he had me do it and he watched very carefully!











Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,641,585
• number of people who died from the virus: 97,686

Given the amount of time needed to coordinate the virtual walk and manage its administration, I haven't been able to take longer walks with Peter. Today, we went for our first long walk in a while. We headed down to the National Mall. I am glad we did. As we were walking down Virginia Avenue, we saw a familiar sight..... hundreds of motorcycles and the "the Saluting Marine." Actually signs of life, which was very welcomed. 

Every Sunday before Memorial Day (for the last 22 years), our National Mall experiences Rolling Thunder. Which has now been renamed... Rolling to Remember. Thousands of motorcyclists ride into DC in a patriotic display in order to honor our veterans, and also to remember those lost or missing soldiers from our nation's conflicts. These heroes from across North America ride into town for this annual event represent their fellow soldiers, sailors, airmen, marines, coast guardsmen, firefighters, rescue personnel and law enforcement officers and make the event especially memorable for riders and spectators. This is the first year the event has been CANCELLED! 

Nonetheless, the Saluting Marine was standing in his usual position today and there were some veterans who were present and united together. 

This is Staff Sergeant Tim Chambers, better known as "The Saluting Marine." He is the uniformed veteran who stands and salutes in the middle of the motorcycle traffic during the Rolling Thunder demonstrations in Washington D.C., on the Sunday before Memorial Day. He has done so since 2001, in the aftermath of "9/11."

This marine is truly incredible! He can stand there for hours and he represents the beauty of patriotism and the spirit of what makes America a great country. 

This is the first year I have ever seen a posting about the "Saluting Marine."

In a city, country, and world transformed by a virus, I found seeing our Nation's saluting marine and the hundreds of motorcycles surrounding him a sign that we must all remain strong, keep the faith, and not lose hope. 

Saturday, May 23, 2020

Saturday, May 23, 2020

Tonight's picture was taken in May of 2004. Mattie was two years old. That day we took him down to the National Mall. Specifically by the reflecting pool near the Lincoln Memorial. This pool attracts ducks. As you can see Mattie was very energized by this sighting and particularly loved seeing mama ducks with her ducklings. We checked it out together, and since I always tried to assess for all possible accidents, I had one hand attached to Mattie's shirt, in case he got too close to the water. Whenever we walk passed the reflecting pool now, I think of this moment in time. 



Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,617,838
• number of people who died from the virus: 96,802

Peter and I couldn't take it today! We got out the hair trimmers and went at Sunny. During normal times, Sunny goes for grooming once a month. Without his groomer, Sunny is a mess. Sunny is a herding dog and has multiple layers of fur. 

From this photo, you can see his shaved leg. The leg that underwent surgery. I am thankful that his leg no longer looks like a raw turkey leg. The fur is growing in nicely. But you can still see the layer of differences! 

I can't say Sunny likes to be groomed. But he put up with us! Given we don't know what we are doing, he turned out fairly well. 

You can see he wasn't happy with us! It is my hope that I can give him a bath outside tomorrow on our deck. Sunny hates water, so we shall see how it goes. 

I would like to share a memorable Walk 2020 story with you. It came from James' mom. This is James and he walked 36,357 steps on May 17th. 

At the end of our Walk day, I had a lovely email exchange with James' mom. I wanted her to know that James was one of our top walkers and therefore earned a $50 i-tunes gift card. In the process of chatting, she wanted me to know that James found our virtual walk to be an incredibly positive experience. At dinner on May 17th, she said she looked over at James and he looked a little melancholy. So she asked him if he was tired. He responded “No, I just can’t believe it is over. It was so fun.” Kristin wanted me to know that having a way of giving back and helping others during this difficult time really helped James. Kristin thanked me for having this event and said that her home would be glowing orange for many days to come. Her feedback made my day!!! 

Friday, May 22, 2020

Friday, May 22, 2020


Tonight's picture was taken in May of 2005. Mattie was three years old and that day we took him to the butterfly pavilion at the Smithsonian's National Museum of Natural History.  Mattie had a great time and several butterflies even landed on him!


Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,598,631
• number of people who died from the virus: 95,874

Peter and I spent about 5 hours driving around town delivering prizes and raffle baskets to our winners. Yesterday, I went to the post office and mailed five boxes of prizes and raffle items to out of state winners. So it was two days of logistics, and I was determined to get everything out in less than one week's time. This is our map of today's journey. We traveled from Washington, DC throughout Northern Virginia! 


Here's the fun part about today, which we did not expect. With each delivery, people wanted to talk with us. I am not talking about a quick hi how are you, I am talking about a true conversation. It was wonderful to meet our supporters in this more intimate way and to hear their stories and perspectives about Mattie Miracle! It was very special and at a time when we are all social distancing, it is clear that people are craving for face to face interactions and conversation.

When we dropped off a raffle item today, we had the pleasure of meeting this family. A family who has participated in our walks many years! But this is the first time, I had the opportunity to interact one on one with them. The young girl holding Emme the dog, is Alexandra. Alexandra won our ipad raffle basket. But I also met her younger sister, Kendall.  I got to hear how much they loved the walk and were really motivated to get in as much steps as they could. In fact, Kendall ran back inside the house to show me her step counter. 

Kendall wanted me to see that her counter is ORANGE and felt it was the perfect step counter for Mattie Miracle. But look at how many steps this young one walked for us on May 17th.... 11,244! I was very impressed. 

We also talked about our t-shirts! Their mom told me that her family keeps every shirt, and the girls use them throughout the year. Personally this caught my attention. So many people go through their closets and donate clothes they don't use on a regular basic. Yet our shirts are very much in circulation and I am  honored people save our shirts and continue to wear them!

Thursday, May 21, 2020

Thursday, May 21, 2020

Tonight's picture was taken in May of 2004. Mattie was playing outside on our deck with his ride-on fire engine. The irony was Mattie enjoyed playing beside this vehicle or incorporating it into his play schemes, rather than actually riding on it. This vehicle was even washed several times through a Mattie make-shift car wash. The beauty of Mattie was things were never boring and he was also a social person. He could play alone, but he much preferred having me as his side kick. 







Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,573,742
• number of people who died from the virus: 94,566

Tonight's Virtual Walk photos highlight some of the wonderful instagram postings done by supporters on May 17th. I think what has caught our attention is people have saved their Mattie Miracle walk t-shirts from previous years and wore them on May 17th. We loved seeing all our different t-shirts on display!

This instagram photo features our nephews in Boston. Again, each one was wearing a different Mattie Miracle shirt!

Our friends in Virginia. We met through Mattie's preschool! 

My friend, Junko's daughter! Bethie loves photography and you can see she has a good eye regarding composition!

This is Carter, our 1st place teen walker. He walked over 50,000 steps on May 17th. His mom posted this photo on instagram! Both of Carter's feet were aching and in a basin of water post-walk. 

This is our friend Kristen. She lives in Maryland. Her whole family was out walking on the May 17th. We met Kristen in 2011, when Peter and I were asked to participate on a palliative care and bereavement panel at a conference in DC. It was Kristen who was moderating the panel. From that brief interaction, I felt very comfortable with Kristen, as I sensed she understood loss and grief and wasn't judgmental or prescriptive as some other psychosocial professionals. In any case, now 9 years later, we are still connected. 

This teen is in California. She found out about our Walk on-line! She not only walked, but clocked in at over 25,000 steps! I love what she wrote in her posting.....

"This morning, I walked 25,063 steps because childhood cancer doesn't pause for a pandemic." 

This is Grant and his family! They have been to all 11 Walks and Grant's company, Ostendio, is a long standing corporate sponsor of our event!

This is a family from Mattie's school. In fact, one of the children in the family is a graduating senior (like Mattie). They walk with us every year and again, notice the different t-shirts. 



A lot of energy was generated from the Virtual Walk. Of course it is hard to determine was there energy around the event because people were trapped at home and were desperate for a positive and healthy distraction? Or does a virtual event provide more flexibility to people and it is more inviting to participants from around the country? 

For the last three years, we always had a virtual walker/team registration option on our walk website. However, the concept never took off. People naturally view our live event as confined to one area. If they weren't in our area, they therefore did not participate. 

Going virtual enables us to expand our base and our presence and frankly if it weren't for the Coronavirus, I am not sure I would have had the courage to change the nature and format of our live Walk & Family Festival. Having to be forced to go virtual this year, has enabled me to think about the Walk differently and expand the possibilities. Mattie Miracle operates on a national level, yet our walks have always been regional. So there are things to think about going forward, and we are grateful that all 50 states participated as well as 8 other countries. That is a Mattie Miracle first!

Wednesday, May 20, 2020

Wednesday, May 20, 2020

Tonight's picture was taken during Memorial Day Weekend of 2006. We drove to Pennsylvania for the weekend, so Mattie could experience Sesame Street Place. Since Mattie was a huge Elmo fan, he was very eager to go. The park, I would say it not so much about rides, and more about water themed rides. Fortunately Mattie was open to that adventure, as long as Peter went with him! I was typically our family's photographer. 


Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people who were diagnosed with the virus: 1,548,646
• number of people who died from the virus: 93,163

Still digging our from the Virtual Walk, but making great headway acknowledging donations, sponsorships, and packing up raffle items. 

On Friday, we will be mailing 5 boxes and hand delivering 6 items. Not just raffle items, but to winners of our Walk step challenge! 

Some more photos sent to us on May 17th. This is my friend Ann and her husband, Bob. Bob was Mattie's orthopedic surgeon. 

These are our friends Debbie and Peter. I absolutely love the pops of orange!

Our friend Ali and her three children. All of whom got into the Mattie Miracle spirit. 

This is Geannie. Geannie is our philanthropy contact at Children's Hospital at Sinai, and she is a pleasure to work with!

Our friend Sara Catherine. She went to preschool with Mattie. She was jumping and skipping while getting her steps in on May 17th. 

Though I don't know this young girl, her mom posted this photo. They downloaded our Walk bib from the website and she colored it in! I absolutely love this colorful photo and so happy they sent it to us!

This photo is priceless! The two boys on the left are James and Jake. They won 4th and 5th place in the step count challenge. Next to Jake is Nancy and then Abby. Nancy and Abby went to preschool with Mattie.

You maybe asking yourself, what are they doing?! They were forming the letters.... MMCF!!!

Tuesday, May, 19, 2020

Tuesday, May 19, 2020 -- Mattie died 555 weeks ago today. 

Tonight's picture was taken during Memorial Day weekend of 2006. We took Mattie up to Pennsylvania to experience Sesame Street place. On our drive up, we stopped at an incredible aquarium in New Jersey. Across the Delaware River, you could see Pennsylvania. Mattie had a wonderful adventure that day.


Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 1,525,367
• number of people who died from the virus: 91,661

We received a countless number of photos on Sunday. I tried to keep track of what states were being represented. Here is a small sample of the amazing people walking with us on May 17th. 

First up, is my mom in California!
She walked 12,743 steps!

Here is my lifetime friend, Karen. Walking in NY. She added an additional 9,556 steps to our overall walk count!

This is Brian and Katy in NY. We had 415 walkers and 106 of these participants tracked their steps. 

These are the Henshaws walking with us in Colorado.

Maureen, walking with us from PA. She clocked in at 8,000 steps. 

This is Anne and Bill in South Carolina. They walked 8,630 and 8,663.

This is Barbara, Peter's mom in Massachusetts.

This is Helen, walking with us in Quincy, MA. Helen walked 13,337 steps. 

The McCarrons in Massachusetts. 15,066 steps!

The Miller Family in New Jersey. 
Zach: 13,182 steps, 
Gary: 12,348 steps
Lisa: 9,138 steps

The Smith Family.... representing Michigan, Massachusetts, and Colorado. 
Maria: 24,213 steps
Julia: 13,006 steps

The Lindbergs in Maryland. The Lindbergs are like us, they lost their only child to cancer. They run the EVAN Foundation in their son's memory and we have great respect for each other. 

This is Jenny in Ohio. Jenny was one of Mattie's amazing nurses. Though she lives out of State, she registers EVERY year for our walk!  

These are the Laytons in Tampa, FL. 

This is Liz and she was walking with us in Florida. 

This is Sony. She was walking with us in Nevada. 

Sarah and her family walking in Nevada. 

Our friend Alison in Utah. 

Patty and Eddie in Ohio. 

Melissa and Maggie! Our second and third place walk count winners. Walking with us in Illinois!

Maggie: 48,517
Melissa: 46,220
Maya: 11,024 steps