Sunday, September 16, 2018

Sunday, September 16, 2018

Tonight's picture was taken in September of 2003. Mattie was intrigued by fire trucks, or I should say trucks in general. Peter's parents gave Mattie this ride-on vehicle and Peter was out in our commons area showing Mattie how it worked. Mattie was cautious at first, but quickly got the hang of it. 

Quote of the day: Man’s greatest actions are performed in minor struggles. Life, misfortune, isolation, abandonment and poverty are battlefields which have their heroes - obscure heroes who are at times greater than illustrious heroes. ~ Victor Hugo

Peter and I went to Curefest on the National Mall in Washington, DC today. This is our fourth year setting up a booth for Mattie Miracle at this annual awareness event. 

What is upsetting about this event is that it doesn't reach the public.... people not exposed to the issues of childhood cancer. 

Nonetheless, the event attracts cancer advocates, childhood cancer patients, survivors, and bereaved parents from around the country and Canada. There are many advocates we love seeing every year and another highlight is meeting new families, hearing their stories, and discussing the importance of psychosocial support with them.

There were 80 foundations (each with their own tent) represented on the mall!

I snapped this memory wall! Rows and rows of children taken from us by cancer. Look at these beautiful faces. It reminds us that childhood cancer is not just about the medicine and it isn't so rare. Families are forever affected!

A close up of Mattie's tribute on the wall. 

At around 12:30, people began walking around the Mall. I tried to snap a few photos of the activity coming passed our tent. 

Walkers! You will find several families holding up signs, walkers holding photos of their children, people dressed with colorful outfits or catchy sayings on their clothing. 

Peter, me and Sunny at our Mattie Miracle booth. We got to the Mall at 8am, to start setting up, and left at around 2pm. 

Sunny was a huge hit. I can't tell you how many people came up to us and asked if they could meet and pet Sunny!

Peter and I were grateful to have Helen and Abbie helping us today. By having their help, it enabled us to truly talk to people coming into our tent. 

We gave away 80 t-shirts today, brochures, business cards and a ton of toys and gifts. 

Peter and Sunny with Vickie, the president of the Coalition of Childhood Cancer (CAC2, or which Mattie Miracle is a member of this organization). 

We were delighted to have our friends Margy and Ken with us under our tent. Margy ran a successful childhood cancer organization for 20 years, and I am honored that she values what we do and wants to bring attention to Mattie Miracle's mission. 

Margy worked with childhood cancer patients for many years and I can't tell you how many patients came into our tent to reconnect with her today. 

We are pictured with our friends Wendy and Gavin. They lost their only child too, so we understand each other well and we respect each other's foundations!

Peter with our Canadian friend and amazing advocate, Neal. Neal lost his son, Brendan, to cancer as well. 

Pictured with us is Joe. Joe runs a very successful childhood cancer foundation out of Delaware and is a wonderful and charming man. We bonded several years ago at Curefest, over the emotions of the day, and we have been friends every since. 

Our friend Margy, with Valerie. Valerie lost her brother to cancer and she comes to Curefest every year in his memory. She is a ray of sunshine. 

Peter with Annmarie, a fellow cancer advocate. 

This is Michaela. She is from Israel. In Israel she works with children who come from troubled homes. So she doesn't have experience with childhood cancer, but truly wanted to learn more. She really caught me off guard, because we need more Michaela's in attendance. She wanted to hear my story and about Mattie Miracle. After I told her, she hugged me, wanted to take a photo, and took my business card because she wants to stay connected. She has four children and couldn't imagine losing one of them. She felt I am amazing, a strong woman, and wanted me to know I am the mother to every family I help. 

I am pictured with Pam Wolters. Pam is a psychologist who works at NIH. She is the Co-Director, Behavioral Health Core, like our friend Lori (who works closely with Mattie Miracle). 










Though I did not take a photo of Linda (a mom) and her poster she was holding of her son, Charlie, I will never forget today's interaction. Linda lost Charlie to cancer only a few weeks ago, and yet found the strength to come to Curefest from Syracuse, NY. Linda purposefully came into our tent today to let me know she met me two years ago at Curefest. Two years ago, I met her and Charlie and I apparently told them about our Psychosocial Standards of Care. Charlie was so inspired by what he learned from me, that he took our brochures on the Standards back to his medical institution where he was seeking treatment and demanded that they provide psychosocial support to teenagers. Charlie worked on his providers for a year. At which point, psychosocial care was started. He's was amazing! Charlie is no longer alive, but Linda wanted me to know that Mattie Miracle's work matters. It affects change. As our Standards provide scientific evidence for the benefits of psychosocial care and it was the ammunition they needed to get Syracuse to do something to support its patients more effectively. This story will stay with me forever, because sometimes it is hard to see the tangible differences the Standards are beginning to make. The story of Charlie proves that we are on the right track. I feel that Charlie and Mattie Miracle produced a change in treatment for children in Syracuse. It doesn't get better than that. 

Saturday, September 15, 2018

Saturday, September 15, 2018

Tonight's picture was taken in September of 2005. We took Mattie to a park and I have no idea what got into him, but the next thing I knew when I turned around was that he was carrying a big log. The log was almost bigger than him! Sometimes Mattie would do things that would just make me laugh. That was definitely one of those times. 


Quote of the day: Art enables us to find ourselves and lose ourselves at the same time. ~ Thomas Merton


Today my friend in cancer invited me to a free workshop she was giving in an art gallery in Arlington, VA. I met my friend through the hospital, as she too lost an only child. We met in 2013, and have been friends ever since. Ilona has found art very helpful on her grief journey. She has studied art and even got a certification in intentional painting. Today's workshop was to create a mini smash book. 

I had never heard of a smash book, so I had to look it up. A smash book is a new trendy way to do your memory keeping. A simple do it yourself craft idea. Smashing is a way to journal that isn’t as precise as scrapbooks are usually considered to be.  A smash book doesn’t need to be in chronological order and it’s even okay if you skip around on the pages. 

This set up was in front of each of us. Ilona had several examples of smash books on display and she walked us through the entire process. 

First she had us write words on a piece of paper. Words that either resonate with us or words that are a part of our lives. Mostly people chose happy words, mine weren't as upbeat. 

So this is what my paper looked like. Words were underneath, and then we shook powder paint on top of the words and sprayed the powder with a water bottle. It was an interesting technique. My colors were Mattie Miracle themed. 

 There were two long tables of attendees! 

This was my final product. You basically take the paper, dry it with a hairdryer and then folder it around a notebook. Almost like a jacket cover!

These were most of the attendees! All I know is it was an hour where I wasn't checking my phone, working on the computer, or focused on Foundation tasks. It was a break. 

My friend Peggy came to the class with me! A photo of us with our final products. 

Me and Ilona. I told her this photo captures two true survivors. 

Friday, September 14, 2018

Friday, September 14, 2018


Tonight's picture was taken in September of 2006. Each weekend we took Mattie to some outdoor park, trail, or experience. Being outdoors was where Mattie was happiest! Ironically, I wasn't an outdoor person at all, until I had Mattie. Now just like him, I prefer being outdoors. He trained me well. Got to love that smile. 









Quote of the day: There are three constants in life...change, choice and principles. ~ Stephen Covey


I had a very long licensure board meeting today. The kind that makes my head spin. One of the issues discussed produced two camps of thinking. We debated this issue for close to an hour. If I have all the facts and feel strongly about something, then it will be very hard to sway me. As a leadership style, I am guided by my principles and at the end of the day, though you may disagree with me, I have found people appreciate my logic and candor. I was told by our leadership today that they were impressed with how I handled this difficult issue. 

Some of my faithful readers may know that our friend, Tim, celebrates orange tie week every year around the time of Mattie's death. Tim wears an orange tie to work five days in a row and shares a photo with us daily. 

Who is Tim? Tim worked in the Georgetown Hospital office of development. Tim was our point of contact for philanthropy and we got to know each other well since 2011. Tim never met Mattie, but instead learned about him and his life through out blog and our stories. 

Though Tim no longer works at Georgetown, our friendship continues, as does his tribute to Mattie. 

So this was Monday's tie.

 Tuesday's tie!

Wednesday's tie! I believe Mattie would have loved this one because it would have reminded him of Nemo (a clownfish), from the Disney movie. 

Thursday's tie. 

Friday's tie reminds me of sun bursts! To me this screams out.... Mattie Miracle. One thing is for certain, Tim has one of the best orange tie collections I have seen. Mind you he rotates his collection, so I don't see the same five ties every year!!!

Mattie left me many gifts behind, and we consider Tim one of them. 

Thursday, September 13, 2018

Thursday, September 13, 2018

Tonight's picture was taken in September of 2007. Peter took Mattie to a Nat's game. One of his first! This was at the old baseball stadium. Mattie was like me, meaning he enjoyed the people watching more than the game itself. Nonetheless, Mattie was happy to be experiencing a new adventure. 


Quote of the day: The secret to change is to focus all of your energy not on fighting the old, but on building the new. ~ Socrates

I am trying to live up to the Socrates' quote. Change in routine is difficult for all of us. But I would say it is particularly complicated when it comes to fundraising. Which is something that is already out of my comfort zone. I would love not to worry about where money is coming from each year. 

Our annual Walk in May is a tradition. In fact, this year will be our tenth anniversary Walk. Yet I have been hearing for years that others may wish to support us, but they don't want to come to a Walk. 

So in essence I have been encouraged to do a cocktail party for many years but I have always put it off because the energy to invest in something new is challenging. After all our target audience for an evening party should be different from the Walk. 

This year, one of our board members, who runs a bourbon distillery in DC, offered to host a free event for us. This was the push that I needed to actually plan a fall event. Yesterday, a core planning group got together and we brainstormed our Bourbon & Bites Bash scheduled for November 8 in Alexandria, VA. We are fortunate that another board member is opening her beautiful home for this event and a master distiller will be on-site to talk about the making of their bourbon and providing samples. 

But of course there will be more..... fine food, music, and information. Peter and I will talk about Mattie Miracle, and one of our researchers will also give a greeting and share with our attendees Mattie Miracle's vision and what we have been able to achieve on the national level. The biggest thing we wish to accomplish with this event, is to attract new supporters to our cause and organization. Because of that, there is no fee or suggested donation amount to come to this invitation only event. Instead, we wish our friends/board members/volunteers to invite their friends for an evening of fun and good food and drink. Of course the intention is that if you are coming, you will seriously consider becoming a supporter of Mattie Miracle. 

Keep in mind that all of this planning is going on, right in the midst of our Post-Halloween candy drive. Which is a show in and of itself. But our board member, Brett, who runs the distillery has been influential in my Mattie Miracle career. With Brett's guidance and support, Mattie Miracle.... 1) Created the first psychosocial resolution on Capitol Hill, 2) Held the first ever childhood cancer psychosocial symposium on Capitol Hill, and 3) Designed a whole new website which more accurately reflects our mission and accomplishments. So clearly, there will be a #4 to add to this list.... with Brett's support, we will be hosting the first Mattie Miracle evening event in our 9 year history. 

Wednesday, September 12, 2018

Wednesday, September 12, 2018


Tonight's picture was taken in September of 2007. On weekend mornings, Peter took Mattie out fishing on the Potomac River. Mattie and Peter were early risers and of course as soon as Mattie got up, he was raring to go. Mattie loved being on the water, riding in a boat, and was learning to fish. As you can see they caught a catfish! The fish was on the boat long enough for a photo and was then released back into the Potomac. 






Quote of the day: If you want to go quickly, go alone. If you want to go far, go together. ~ African Proverb

Over the weekend, our friend who typically houses our annual candy drive, asked that we move the candy to a storage facility this year. Mainly because it is overwhelming to house 12,000 pounds of candy for month. As soon as I received her request, I began checking out storage facilities in the Alexandria and Arlington area. I narrowed my choices down to three places. 

Yesterday, Peter and I went to visit each facility for a tour. The first facility we visited was lovely. We loved the staff, the cleanliness, and the fact that the facility was new and near a police station. However, I felt it was important to be honest with the facility and let them know what we were planning on housing in the unit. I brought a flyer about our candy drive with pictures. Though they loved our mission and the purpose of the drive, the company's policy is that NO FOOD of any kind can be stored. So one down!!!

So we moved onto company number 2!

At the second facility, we met the manager. He is Nigerian, and studied in Italy. He speaks Italian fluently. We got along splendidly. He gave us a tour of his facility and we told him what we needed to store. Again he immediately quoted us the same food policy as the last facility. But in his case he decided to make an exception for us, because he liked our mission. 

This is what the hallway into the unit looks like. It is climate controlled, clean, and secure. You can't get into the building without a code and every unit is locked. 

This is the size of our unit.... 10x30. It is the size of a garage. It will be perfect for both sorting and storage of candy in bins. Of course the main concern is candy donors. They have been used to dropping off candy at my friend's house at any time of day. Now that we are using the facility, candy can only be dropped off on certain days and I will have to man the unit to receive the candy. However, we are going to work on streamlining the process this year, so that candy drop off and sorting are on the same days. We will no longer accept candy donations 24/7 for two weeks straight. This may deter some people from donating, but time will tell. The drive has gotten bigger than a home grown project and therefore this seems like the most practical and efficient solution.  

Tuesday, September 11, 2018

Tuesday, September 11, 2018 -- Mattie died 469 weeks ago today. 

Tonight's picture was taken in September of 2008. Our neighbor gave Mattie this special cowboy bear. The bear was hand sewn and had an inscription to Mattie on the white portion of the bear's boot. Literally this bear was as tall as Mattie. Mattie received countless gifts, daily, for over a year. I honestly have no idea where everyone found these amazingly creative and special gifts. But each and every item (big and small) were deeply appreciated by us. Days that we couldn't get Mattie engaged with the world, he was always intrigued to open up a present. 


Quote of the day: If Not Me, Then Who… ~ Travis Manion (1st Lt. Travis Manion, a heroic marine who died in Iraq)

We took this photo today as we drove passed the Pentagon. This big flag comes out every September 11th, and drapes over the part of the building hit by Flight 77. 

It is hard to believe that 17 years ago today, the US experienced the greatest tragedy and loss of human life (on our own soil) in our history. It is a day Peter and I will never forget, as he was working in Northern Virginia and I was home, two months pregnant with Mattie. Peter called me that morning and told me to turn on the TV. I couldn't get over what I was seeing, as it looked more like a movie than real life. I am not sure how the cities most impacted by these terrorists have ever recovered. But like NY, DC rebuilt. 

What continues to capture my attention is the trauma that survivors and family members continue to experience today. Their lives have been forever changed and I honestly can't imagine how they feel as they walk around town in 2018 and see people for the most part carrying on like business as usual. Certainly this is important optics, because the American spirit will not be brought down or controlled by threats and terrorism. But there is a human factor to all of this. The survivors, the families of victims, and first responders who live with their own traumas and are dying from 9/11 related cancers (over 72 cancers to be specific... http://www.911cancervictim.com/?gclid=Cj0KCQjwz93cBRCrARIsAEFbWsiVkAfnC2ydhBv1U_LWpRKuNglPElybbiZvesS6kAGOooH1Mx4MahkaAvF7EALw_wcB). 

As Sunny and I walked along the DC waterfront, we could see flags hung from at least 5 buildings in Rosslyn, VA. We see the American flag displayed in this fashion twice a year.... September 11th and July 4th. 

For the most part, those I met today seemed totally unaffected by September 11th. I mean by its anniversary. All I know is in 2001, after this nightmare, we saw a different side of people. Not people fighting over ridiculous political nonsense but instead united together. People helping others in extraordinary ways. Which gets to tonight's quote.... If Not Me, Then Who? 

This quote was spoken by 1st Lt. Travis Manion. Lt. Manion was a marine, who served his country with great honor. He died in Iraq under sniper fire, but not before drawing fire away from two wounded teammates. Saving their lives.  

In 2006, Lt. Manion, met a firefighter by the name of Tim Sullivan, at Rescue Company #1 in midtown Manhattan. Mr. Sullivan survived 9/11 and to this day gives the public tours of his firehouse and recounts for them the heroism of his fellow firefighters, first responsers, and every day people performing extraordinary acts to help others. In 2006, a marine visited this firehouse and chatted with Mr. Sullivan. Little did Mr. Sullivan know, but this marine was Lt. Manion. He only found this out after reading a memoir about Lt. Manion. In one of the chapters Lt. Manion mentions that he had the opportunity to meet a 9/11 firefighter. He said after hearing about this firefighter's experiences during 9/11, he was reminded why he continues to serve the USA. Mr. Sullivan immediately knew that Lt. Manion was talking about him. That this brief conversation mattered.

Many people changed jobs after 9/11. Lives were altered and as such so were priorities. I am in no way equating the loss of Mattie, to such a grand scale terrorist attack. But what I do see in terms of a commonality is trauma. The survivors express many of the same signs and feelings that are within Peter and me. Which maybe why we both watch 9/11 documentaries every anniversary, because it is 17 years later and for those personally affected, this tragedy could have happened yesterday. Peter and I get it and we get them. 

The article written by Tim Sullivan reminds me that our lives are intertwined. We aren't always aware of what kind of impact our thoughts, feelings, and behaviors have on others. Yet as in Mr. Sullivan's case, his conversation with Lt. Manion was meaningful and as a result both lives were altered by the other.  

The article about Mr. Sullivan and Lt. Manion:
New York City firefighter: How September 11, a day of tragedy, can be a day of inspiration 17 years later

Monday, September 10, 2018

Monday, September 10, 2018

Tonight's picture was taken in September of 2007. Mattie had started kindergarten and was adjusting to that transition. As he loved his preschool and really did not want to leave it behind. 
Mattie's kindergarten teacher ran an after school program, called construction club. As you can see, the club involved making creations out of everyday household items. Mattie absolutely loved this club and I can't tell you the kinds of pieces he brought home. All sizes and shapes and Mattie did not like parting with any of them. This club set the stage for his time in the hospital. Because Mattie would literally take boxes and other hospital supplies and build and create with them.


Quote of the day: The smallest act of kindness is worth more than the grandest intention. ~ Oscar Wilde

On Saturday, I received an email about a kindness project being done in Maryland in Mattie's honor.  Our friend, Kristen (and her adorable children), bought wheeled toys (cars, planes, trucks) in Mattie's memory. They then left the toys outside of their town library, train station, and playground. The goal was to make other children happy in Mattie's honor. Of course the number one way to add a smile to a child's face, is to surprise them with a toy. 

This is a photo I took last August of Kristen's boys with Sunny. I am told that Sunny is the first and only dog who has been invited to visit their home. Sunny was thrilled!!!

These are the wonderful toys Kristen and her boys bought. They then created the beautiful Mattie card tags for each toy.

We met Kristen shortly after Mattie died. She is a social worker by training and invited us to present on a bereavement panel discussion at a local conference. We have been friends ever since then and we value Kristen's kindness, compassion, and sensitivity.  

Kristen started her own 501c3 called Kindness Grows Here. The organization's mission is dedicated to fostering kindness in children and spreading kindness in our communities!

Her website is:
https://kindnessgrowshere.com/about/

Believe it or not, the mom of these cute children sent me an email on Saturday. Her children found these toys with Mattie's tags outside the library. She wanted me to know her children were delighted to find these acts of kindness and she decided to even make a donation to the Foundation. 

Check out the message from Heidi (the mom).....



We found these wheely toys at Odenton library! Thank you!! We spent the afternoon talking about your Mattie. And of course playing. We are praying for your family as you remember him today. We donated, too. 🙂 I'm glad I found a way to share the photos! Our kids wanted to buy toys out on errands today, but it wasn't in the budget or plans. When we found these toys, they asked if we could have them. I said no at first, but then saw the tags. They were so thrilled to take them home! I told them it was a sweet gift from Mattie and God. Many blessings to you.

Sunday, September 9, 2018

Sunday, September 9, 2018

Tonight's picture was taken in September of 2008. Mattie was a month into treatment and had already lost his hair. Thankfully for the most part, Mattie wasn't upset about losing his hair. But in the grand scheme of all that he endured, losing his hair was probably the easiest thing he faced. As you can see, Mattie was BUSY!!! He made a tower out of his markers and for the most part, whether Mattie was receiving chemo or dealing with the side effects of chemo, he remained busy. Mattie rarely slept or rested and therefore neither did we.  I would say we lived on little (2-3 hours a night) to no sleep for over a year. 


Quote of the day: This is the true joy in life — being used for a purpose recognized by yourself as a mighty one; being thoroughly worn out before you are thrown on the scrap heap; being a force of nature instead of a feverish selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy. ~ George Bernard Shaw

After a full day yesterday, which wasn't only physically exhausting but mentally and emotionally, Peter and I prepared a lovely lunch for our niece and nephew. Sydney and Will were visiting from Boston, as Will is a senior in high school this year and wanted to see several colleges in the DC area. 

This was our officially first meal with others on our new dining room set (well not so new, since we bought it from our neighbors who moved back to Ireland). It was a true pleasure to set this table and eat at it. It just feels right, unlike the table and chairs we have been using for years. 

We even made a homemade blueberry pie. It was super easy and delicious!! Served with vanilla bean ice cream..... a Mattie approved choice!

Indie, our cat, hid for the entire visit. But Sunny.... loved the attention. 

Before they left, I captured this photo. I think photo documentation is important for all occasions. 


Given that yesterday was the anniversary of Mattie's death, it was hard not to reflect on our reality today. My nephew Will, is close in age to Mattie. They were about 18 months apart. Yet as this photo so vividly shows.... Mattie will be forever 7.

Over lunch the kids were talking about their dad and some of the things he is famous for saying around the house. In fact they have a whole list of dad 'isms.' I did not need to tap into Peter's head, because I immediately understood how this conversation was affecting him. I think when you lose a child to cancer, you live in two worlds. The world impacted by death and the world around us unaffected by child loss. It is a fine line to walk, almost like a trapeze artist in a way. You get good at perfecting the art of balancing these worlds but I would be lying if I did not admit there are still times where we feel like we are slipping from the guide wire.