Saturday, June 1, 2019

Saturday, June 1, 2019

Tonight's picture was taken in August of 2008. Mattie started his cancer treatment that month! While home between infusions, Mattie's preschool teacher, Margaret, came to visit. It is hard to believe that both Mattie and Margaret are no longer with us. Today is the fifth anniversary of Margaret's death and I will never forget how Mattie grew, developed, and made his first friends in Margaret's classroom. In the process, I gained a wonderful friend. 


Quote of the day: It's one of the ironies of human nature that the most sensitive people are generally insensitive to the feelings of others. ~ Ann Landers


Ann Landers' quote caught my attention tonight. Why? I guess because I do consider myself sensitive to other people's feelings, yet under certain circumstances, I probably can be insensitive. I will give you an example. Today, Peter and I took Sunny with us to Home Depot. I needed to purchase a few plants for our garden to replace some that had died. While in the garden section of Home Depot, a woman came up to me and started giving me a hard time about Sunny. She said... 'don't you know your dog's feet are hot, touching the pavement.' Certainly I could have responded with either no response or with something snappy. But instead, I said to her..... 'Sunny lives in the District of Columbia and is VERY used to walking on pavement even in the summer months.' With that I walked away. She had no response. If I thought about being sensitive, I could have thanked her for her concern and made conversation with her. But frankly, my response was the best I could do at the moment. 

After that wonderful interaction, then a man came up to me and said..... 'what a beautiful dog. Can I pet him?' This fellow and I got to talking and I learned that his border collie died and he misses that dog. But he does have another one at home. He told me that his dog is like his child, and he doesn't leave home that often without his dog. Needless to say, we got along splendidly because our pets are a vital part of our family. I do think it is interesting that these two very different conversations happened within minutes of each other, which just confirms to me that how a question is asked, and the tone that is used in the inquiry can elicit very different responses from the same person. 

Tonight's Walk & Family Festival photos highlight the Lego activities at the event. In 2011, I got connected with the WamaTLCs (The Washington Area Lego Train Club). Particularly a wonderful couple, Rich and Linda Schamus. Rich and his wife have been working with us for years! They do not charge us a thing and I assure you their set up is time consuming and labor intensive. But their train and city displays are incredible. They also bring thousands of Lego bricks to the Walk for kids of all ages to play and build. 

See what I mean.... kids of all ages gravitate to build under the Lego tent. We have Legos at our Walks in honor of Mattie, the King of the Legos. During Mattie's cancer treatment, we owned every Lego kit on the market that year. Legos in essence were therapeutic for us as a family and these creations enabled Mattie's nurses to connect with him. Many times Mattie did not want people in his room. But if someone was coming to talk about his Lego structures, then some how that broke the ice and conversation ensued. 

These are colleagues of Peter's! They have been supporting us for years. The three year old is Charlotte, she is our God Daughter. She even attended our Walk as a newborn!

These are our wonderful volunteers, who signed up to work under the Lego tent. Little kids and tiny Lego pieces always concern me which is why I feel it is important to have supervision on hand and I know the little kids like interacting with the teenagers. 

The fellow on the right is Kazu. Mattie and Kazu were close friends in kindergarten. In fact, they met each other in summer camp of 2007, a couple of months before school officially started. I enrolled Mattie in camp in hopes of him making friends before kindergarten. I like to take credit for their friendship. On the first day of camp, I literally walked into the classroom with Mattie. All the other kids seemed to know each other and Mattie felt anxious. I noticed another little boy by himself. I literally walked up to him, him being Kazu. I introduced Mattie to Kazu and I suggested they get to know each other and stick together. Believe it or not, that actually worked! So much so that Kazu's mom, Junko, and I have become close friends and Junko's whole family are big Mattie Miracle supporters. 

Friday, May 31, 2019

Friday, May 31, 2019

Tonight's blurry photo was taken by me in June of 2007. We were at Dutch Wonderland in Pennsylvania and Mattie and Peter went down this gigantic slide together. By that point, Mattie had overcome whatever hesitation he had about slides. Mattie had a great time at the park that day, as he went on every roller coaster possible! I was thankful Peter could share in this excitement with Mattie, because unlike the both of them I do not care for such motion. 






Quote of the day: Success is not final, failure is not fatal: it is the courage to continue that counts. ~  Winston S. Churchill

In all reality, Churchill could have been talking about cancer. Because I would say it is the courage to continue on that is amazing! It is what makes all people with cancer super heroes in my book, as they dig deep to find the inner strength to face each treatment, each side effect, and the long term psychosocial issues that impact one's mind, spirit, and quality of life. 

Today I went to visit my friend Margy. Margy is a thyroid cancer survivor, and now she is coping with a second diagnosis.... metastatic ovarian cancer. Margy was diagnosed in January of 2018, and will begin a trial next week, as standard of care hasn't stabilized her disease. 

I was so thrilled to hand deliver the Dining Around Town raffle basket to Margy today. As she and her family support Mattie Miracle in many ways. You may find it interesting to note that we only talked a small percentage of time  about her diagnosis and the upcoming treatment next week. That may seem odd to read this, but I know first hand what living with such a life threatening disease feels like. Just like with grief, when managing a cancer treatment, you really have to go in and out of the disease. Meaning, in order to psychologically survive, distractions are NEEDED. These positive diversions truly take our minds and hearts off of being ill. So I am happy to serve in that capacity today. 

To my surprise Margy and her husband made me my own photographic placement for THEIR kitchen table. I try to visit monthly and now I officially feel like part of the family. 

This photo was taken around Margy's birthday in April. 

One of the items in the raffle basket was this light up fourth of July headband. Margy put in right on, so we could show off our gifts. Margy with her headband and me with the beautiful seashell pendant she brought me back from the beach. 

I wanted to highlight several of the wonderful vendors or corporations that support the Mattie Miracle Walk. This is Sergio, from Rack Impact Entertainment. Sergio has been our DJ at the Walk for 5 years now. He brings his entire family, and all of his children volunteer with us. I found Sergio years ago on a website called Gigmasters. Sergio responded to my request for a DJ and never charges us even a penny for his professional service! He and his family are delightful to work with and he brings a certain level of fun and life to our event. 

This is Dylan, from Dylan Draws Stuff. I found Dylan through Gigmasters too. He started working with us last year and he was a major hit at the Walk. Like Sergio, Dylan charges us NOTHING for over 4 hours of his amazing service. I consider our vendors..... Mattie Miracle workers as they enable us to generate funds for the Foundation and also ensure our Walk participants have a good time. 

This is Candra, from Beaux Lou Events. How did I find Candra? No surprise, from Gigmasters. Candra responded to my on-line request for a face painter and balloon twister. Candra and I connected immediately as she lost her Aunt Maddie (who was a pediatric nurse) to cancer. Candra also donated her hours of service for free. 

This is Adina, our child life specialist at Children's Hospital at Sinai in Baltimore, MD. Adina set up a booth at the Walk and was on hand to answer questions about what child life is and does, and also provided fun activities for kids of all ages.

Adina has been working with us since the Fall, and is truly dedicated to helping children but also committed to learning more about Mattie Miracle. Adina created a Sinai Walk team this year and her entire family attended our event.  

This is Lenny and he works with TeraThink. TeraThink is the presenting sponsor of our Walks. TeraThink has been a Mattie Miracle sponsor since 2011. This year, they made a $10,000 commitment to us. In addition to monetary support, they also provide on the ground professional support with our other activities..... such moderating our Round Table on Capitol Hill. 

These ladies work at the local AT&T store. They asked whether they could set up a community tent at our event. After I discussed this with them and learned that our supporters weren't going to get pitched for products and services, I agreed to their attendance. They were lovely and they want to get more involved in our future events. 

Our other big corporate sponsor is Anthem. From left to right is Carolyn, Artis, and Ernest. Carolyn flew in from Atlanta to walk at our event and it was delightful to be able to thank them in person for their generous support! 

Thursday, May 30, 2019

Thursday, May 30, 2019

Tonight's picture was taken in June of 2007. We took Mattie to Pennsylvania that Memorial Day weekend. As we were driving, we saw a farm and this huge rainbow colored thing in the field. So literally we pulled over to check it out. What was it? A trampoline, but at ground level. Mattie and Peter had a great time jumping up and down and I will never forget that moment in time. As it wasn't planned and NONE of us expected a trampoline to be embedded in a farm field. 


Quote of the day: When someone you love dies, and you’re not expecting it, you don’t lose her all at once; you lose her in pieces over a long time — the way the mail stops coming, and her scent fades from the pillows and even from the clothes in her closet and drawers. Gradually, you accumulate the parts of her that are gone. Just when the day comes — when there’s a particular missing part that overwhelms you with the feeling that she’s gone, forever — there comes another day, and another specifically missing part. ~ John Irving


I went to see my urologist today. Since 2009, she has been seeing me every 3-4 months for TEN YEARS. My joke is I have put her children through college. However, after Mattie died, I developed many physical issues, the bladder being one area of concern. When I was referred to her, I was not in a good place emotionally, but I put up with her personality because she was deemed a competent provider. 

Now ten years later, I can definitely say with confidence that she medically knows her stuff. She has even referred me to great doctors like my gyn-oncologist and my kidney specialist. However, she bedside manner leaves a lot to be desired. On occasion, I have told her off. Especially when she was upset with me for paging her after hours while I was having a full blown UTI. She is a talker, typically one way, and I truly do not think she always understands that patients have feelings and sometimes we are in pain and need attention immediately. 

When I saw her for my check up today, she told me that her father died. Her father was a surgeon by training and he and her mom have been married close to 60 years. The point of the story was she was telling me that her mom is now very depressed and is being watched constantly because of the concern of suicide. I could clearly see that my doctor was overwhelmed and wanted to know what to do with her mom! 

As she was expressing herself and talking a mile a minute, I just listened. After which I said to her that there are NO fixes. She can't want her mom to feel better, to move on, or to focus her attention on volunteering. When someone is in this much pain, the only thing we can do for a loved on is to be present, to listen, and listen, and listen some more. I realize what I was expressing to her was counter intuitive because medical doctors want to prescribe something, initiate a plan, or see immediate change. Unfortunately there is nothing immediate about accepting loss and trying to re-engage with the world. 

Certainly the 15 psychosocial standards of care that Mattie Miracle envisioned are crucial, but I would say standard 14 (bereavement) maybe one of the MOST needed standards in the health care profession. As helping families cope and manage living after a significant death is practically non-existent. Families for the most part are left on their own to navigate in their world, a world that no longer makes sense to them, a world that seems insensitive to the loss, and a world that doesn't understanding that some losses are forever losses. 

I wanted to ask my doctor where her mom lives, because frankly I think her mom and I would relate to each other. Normalizing how one feels in loss is actually very helpful. Because without this, it is very easy to think something is wrong with us, that we are going crazy!

Some more Walk photos. Tonight's posting will highlight some of our Teams. These are students from TC Williams High School. These students are part of the School's Robotics Team and this is the second year they have come to our Walk and brought their team designed robot (the square shaped robot in front of them)!

This is Take the Stage. They are a children's theatre performance company in Rockville, MD. The artistic director is our friend Susan Thompson (the wife of a Mattie Miracle board member). 

Susan and several of her students came to the Walk to surprise participants with a Flash Mob to the ABBA song, Mamma Mia. 

This is Team Saints! The team was led by Abbie Henshaw, Tim Keefe, and Liliana Dowling. ALL of whom were kindergarten students with Mattie. Amazing no? Team Saints had over 50 participants this year and raised $3,000 for us. 

This is team Kimber. The captain of this team is my friend Margy. Margy is currently in active cancer treatment and even in the midst of this, was determined to come to the Walk and raise money. Margy walks in memory of her friend, Kimber. Kimber was a pediatric oncology nurse who died from kidney cancer. The team is comprised of Kimber's husband, sister in law, children, and Margy's family!

This is Team MedStar for Mattie. Notice the lady holding up the sign! That is Tricia, Mattie's favorite HEM/ONC nurse. 

This is team RCC ROCKS, which is captained by my friend Ann. All of the individuals on this team are connected to us through Mattie's preschool. Some of the kids went to school with Mattie, but many are parents I met through the school. Incredible people who after all these years are still committed to Mattie Miracle. 

The lady in the photo all the way on the right is Ali. Ali is the daughter of Margaret. Margaret was Mattie's preschool teacher and my close friend who died from ALS in 2014. Margaret was committed to Mattie Miracle and Ali has picked up where her mom left off. In addition, all of Ali's children participate in Foundation activities. Do you see the little girl on the front right? That is Charlotte, Ali's daughter. Charlotte was our youngest volunteer at the Walk this year, helping people under our craft tent. 

This is team 'Mattie Moon' and 'That Walk Team' (captained by my friend Peggy). We took a joint photo together. Peggy helped raise close to $12,000 for the Foundation this year. 

Mattie Moon was comprised of my family and close friends. I am so proud of our team this year, because they raised over $8,400 for the Foundation. 

Wednesday, May 29, 2019

Wednesday, May 29, 2019


Tonight's picture was taken in June of 2007. We took Mattie to Lancaster Country, Pennsylvania that Memorial Day Weekend. Along our travels we came along a pretzel factory, that makes its tasty treats the old fashioned way.... by twisting the dough by hand. Mattie got a tour and then learned how to twist a pretzel. You can see his creation in his hand!










Quote of the day: True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others, at whatever cost.  ~ Arthur Ashe


Don't even asked me what happened to today! Other than walking Sunny, I haven't moved from my computer. As I am digging out from the Walk and diligently working on acknowledgments of checks and our raffle donors. I am making headway, and hopefully with another push tomorrow, I will be done with all written letters. Then onto writing a June newsletter and working on a Walk video. 

Tonight's photos highlight the Corn Hole Tournament at Mattie Miracle's Walk & Family Festival. In all reality we have three big things going on at the event.. 1) the Walk with a family festival of activities, 2) a corn hole tournament, and 3) a raffle. 

Herman, our photographer, captured all 35 registered participants in the tournament. Our largest group of participants ever!

Believe it or not, it takes all of these volunteers to make the Corn Hole Tournament successful. Volunteers observe all six corn hole boards, they keep score, as well as pick up bean bags to return to the next set of players. 

This is Ellie and Tim. Both of these teenagers went to school with Mattie. Ellie and Mattie were in preschool together and she has been raising funds for Mattie Miracle since she was in elementary school. In addition to that, Ellie shows up by 7am, to help with Walk set up. She has done this for least five or more Walks. 

Tim went to kindergarten with Mattie. Their birthdays are one day apart from the other. How do you like that? Tim has been attending Mattie Miracle Walks for a decade now. He works hard at getting classmates to attend the Walk each year. Tim also fundraises at school by hosting Friday bake sales and was extremely helpful with event set up this year. I believe Mattie sees all of this and I certainly appreciate that a core group of friends work diligently to keep Mattie's memory alive.  

This is our friend Kristen. Peter and I met Kristen soon after Mattie died, as she was moderating a bereavement panel we participated on at a local conference. I immediately connected with Kristen, and as my loyal readers know, I don't always get along splendidly with psychosocial professionals. Kristen was different. 

Five years ago, Kristen connected me with Inovalon. Thanks to this connection, I am proud to say that Inovalon has become one of our top level corporate sponsors! Amazing how it all started over talking about Mattie. 

This fellow is Zachary! He and his parents traveled from New Jersey to attend our Walk. 

This is our 1st place Corn Hole winner, Chris Brogan. Though I never met Chris before, he has been supporting our Walk for years now. As he works with my friend Carolyn, and has bought raffle tickets from her over the years. Chris is unfortunately familiar with childhood cancer, so his support of our work is very meaningful to us. 

Pictured from left to right: Vicki, Ann (Corn Hole Chair), Chris, and Peter. 

This is our 2nd place Corn Hole Tournament winner, Zachary Miller. Zachary's dad was a math student of my mom's. When my mom won her hall of fame honor at her school in October of 2018, she had the opportunity to reconnect with Gary (Zachary's dad). They have picked up right where they left off, and Gary and his whole family drove down to support the Walk this year. 


Pictured from left to right: Ann, Vicki, Peter, and Zachary

This is our 3rd place Corn Hole Tournament Winner, Mike Grusholt. Mike is Tricia's husband, and Tricia was Mattie's favorite HEM/ONC nurse. Mike plays in our tournament year after year, and is an excellent player. So much so, that he typically wins 1st, 2nd, or 3rd place. We love his whole family's participation.

Pictured from left to right: Vicki, Ann, Mike, and Peter

Tuesday, May 28, 2019

Tuesday, May 28, 2019 -- Mattie died 505 weeks ago today.

Tonight's picture was taken in June of 2007. Mattie was five years old and we took him to Pennsylvania for Memorial Day Weekend. We wanted Mattie to experience Dutch Wonderland, a theme park in Lancaster County, PA, geared toward preschoolers. 

We stayed at a Marriott, and the chef took a liking to Mattie. One morning, the chef gave Mattie his own chef's hat to wear. Mattie loved the hat so much that he wore it back to the room and while IN THE ROOM!!! 




Quote of the day: To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and to endure the betrayal of false friends. To appreciate beauty; to find the best in others; to leave the world a bit better whether by a healthy child, a garden patch, or a redeemed social condition; to know that even one life has breathed easier because you have lived. This is to have succeeded. ~ Ralph Waldo Emerson


Today is the first day in WEEKS that I slept for for more than 4 to 6 hours. It is glorious to have the Walk behind me and to be home. Home without deadlines and other obligations. With that said, the Walk maybe over, but the work isn't! I spent several hours this morning re-organizing Walk materials that were stacked in Mattie's bedroom. They were re-organized and stored away for next year. It is wonderful to have that behind me and accomplished! 

I can safely say that Walk items are now officially stored away. But unfortunately I am not done. I still have raffle baskets to deliver or mail to winners across the Country, donations that came in by mail/check to acknowledge, and then my focus will go to acknowledging all of our raffle donors. Of which we have around 40! Mind you, a good portion of our Walk donations were acknowledged on-line, as they came in, that same day I sent out a thank you email. Which is a blessing, because with over 300 donations, the use of technology makes processing this volume manageable. 

Posting some more photos from the Walk & Family Festival. This is a photo of two teams combined together..... Team Mattie Moon (our family's team) and That Walk Team (with my friend Peggy as its captain). Peggy had a small team this year and asked whether she could take a photo with us.  

A family photo of Peter, me, my parents, and Peter's parents!

Me with Barbara and Don (my in-laws) and Lisa (my sister in law). All three came down from Boston to attend the Walk. 

Me, my mom, and her friends from New York..... Ronee and Eugene. 

Next to me are Gary, Lisa, and their son, Zachary. Gary was a student of my mom's. Actually one of her favorite students! Gary brought his family down to Alexandria, VA from NJ to attend our anniversary Walk.  

Our photographer, Herman, captured this photo of my dad at the magic show. My dad always loves this show (performed by Mattie's assistant head of school), and I think this photo captured that feeling completely. 

Our God Daughter, Charlotte, came to the Walk with her parents. So happy Herman captured Peter with Charlotte. 

This is a photo of us with Tricia (Mattie's favorite HEM/ONC nurse) and her family. Tricia hasn't missed one Foundation Walk yet. We are deeply grateful she continues to be on this journey with us, as we think she is an incredible nurse and person. 

Left to right: Peter, Tricia, Vicki, Nicole (Tricia's daughter), Mike (Tricia's husband), Matt (Nicole's boyfriend), and Matt's mom

Monday, May 27, 2019

Monday, May 27, 2019

Tonight's picture was taken on Memorial Day of 2006. That year we took Mattie to Sesame Street Place in Pennsylvania. I had learned about this preschool theme park after talking to several moms at Mattie's school. Given that Mattie loved Sesame Street, and especially Elmo, it seemed like a good place to visit. Mattie had a GREAT time. I am not sure what he loved more.... staying in a hotel, going to the park, or seeing the park's Memorial Day parade. It was a weekend to remember! 







Quote of the day: People do not decide to become extraordinary. They decide to accomplish extraordinary things. ~ Sir Edmund Hillary

Peter and I stayed at the Fairfield Inn in Brunswick, Maine this weekend. I have never stayed at this form of a Marriott hotel before, but I would have to say everyone who worked at this hotel was stellar. Starting with the people working at the front desk. Who always greeted you with a smile and they even gave us a hand written welcome letter when we checked in. Absolutely unheard of living in the city! 

Though Maine is a very rural state, there are aspects of it that are fantastic. Starting with green space and NO traffic EVER! Do you love the humorous signs on the road that we passed??

In addition, people are warm and friendly. Not to mention trusting. A night and day experience from living in Washington, DC. This morning, we went downstairs for breakfast a little after 9am. The hotel said their buffet was open until 10am, given it was a holiday. But when we showed up, the buffet was being dismantled. I spoke with the lady working in the restaurant, and I wasn't sure who was more mortified by this timing error, me or her. She couldn't do enough, and brought us out food and made sure we had a full breakfast. Absolutely amazing service at this hotel and I would love to clone them! 

Before heading to the airport, we stopped at Freeport Village. Which is an outdoor shopping area, situated in a charming town. Though it was a holiday, there were NO crowds, NO trouble parking, and yet there were major sales. Living in a city, this freedom of space is a rarity and a welcomed treat! Though our luggage was packed, we bought several lovely things and I squeezed it all into our carry on bags!

This moose sign was at the Portland Airport. Unlike airports at major cities, this airport was open, no traffic, not a lot of people, and was truly a more relaxing experience!

Check out our sparrow friend who was sitting right near us as we were waiting to get on the plane. Perhaps a sign from Mattie? Perhaps this bird knew I wasn't in the best of moods, as celebratory events such as a college graduation depress me. Either case, the sparrow provided us with a happy diversion and a good send off to Washington, DC. 

Sunday, May 26, 2019

Sunday, May 26, 2019

Tonight's picture was taken in May of 2007. We took Mattie to Pennsylvania over Memorial Day weekend. Because Mattie LOVED trains, we took him to the National Toy Train Museum. Mattie enjoyed the whole experience, especially seeing trains up close and personal. Near the museum, there was also the Red Caboose Motel. Literally train cars have been converted to hotel rooms, which Mattie thought was great. We always joked about coming back and staying in one, but of course a year later, Mattie was diagnosed with cancer. 


Quote of the day: A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ~ Christopher Reeve

This morning we attended the Bates College graduation. I have never been to the campus before, but we wanted to make the journey up to celebrate our nephew, Nat's graduation. As we arrived on campus, we got to see Nat proceeding in with his 469 other classmates. Peter snapped this photo!

The ceremony lasted for about two hours. What started as a cool day, turned out to be bright and sunny. We took a family selfie. From left to right:
Will (our nephew), Nat (our nephew), Chris (Peter's brother), Sydney (our niece), me, Lisa (my sister in law), and Don (Peter's dad). In the front are Barbara (Peter's mom) and Peter. 

Nat with his siblings and parents. 

Peter and me with Nat. After the graduation ceremony, Bates had a luncheon buffet outside for the graduates and their families. It was a major production, but very nice for the campus to provide lobster rolls and other goodies for everyone. 

After graduation, we drove about an hour to Waterville, Maine. The rest of the family was staying at a camp by a lake. So we visited them there and had dinner together. 

Of course we are happy to spend time with our nephews and niece and to see them grow and mature. Yet I would say that happy events always give me pause. I pause because I am reminded of who is missing and who we won't be seeing graduate. I saw parents all around me today watching their children graduate, clapping, cheering, and helping them pack. I can absorb all of this but that doesn't mean I don't also feel the loss. 

I would have to say that Maine is not for the meek. It is very beautiful, but very rural. Trees everywhere and frankly since I navigate by landmarks, I would be lost here ALL the time. As every road looks exactly the same to me. We see signs along the road for Moose and deer, and can only imagine these roads at night with no lights.  

My view while Peter was driving back to the hotel. I am thrilled we drove before the sun completely set, because I truly think the four legged creatures own the roads at night.