Saturday, May 24, 2014

Saturday, May 24, 2014

Tonight's picture was taken on May 6 of 2009. "Super Mattie" was created by Mattie's art therapists, Jenny and Jessie. They created this decal of Mattie and ironed it onto a cape. So literally Mattie had his own Super Mattie Cape. The photo of Mattie featured him wearing his circus glasses from his night at the circus in March of 2009. 


Quote of the day: Who doesn't want to know that we notice them and value them? And who might respond to us better when they feel that they matter? It probably cannot be overstated – it matters...that people matter. ~ Steve Goodier

Tonight's photos capture the excitement and energy of the Kids Trots from the fifth anniversary Mattie Miracle Walk. I love this particular photo! One of our high school student volunteers was escorting one of our youngest trotters to the track. However, I want to put this cute trotter into context. 

This year's Walk was dedicated in the memory of Jocelyn Sweet. Jocelyn was a good buddy of Mattie's and an avid supporter of the Foundation. Jocelyn also battled osteosarcoma and on April 2, she lost her 9 year battle with the disease. This little one headed to the track is Jocelyn's niece! Jocelyn practically attended every Foundation Walk, and though she wasn't physically with us this year, her spirit was very much present!

There were FIVE kid trots in total: 1) 3 and under, 2) 4 and 5 year olds, 3) 6 and 7 year olds, 4) 8 and 9 year olds, and 5) 10-12 year olds.

This photo captures the 4 and 5 year old trot! The adult walking beside them is our Foundation board member, Ann, who runs the trots on the day of the event.  

Though each trot has a top prize winner, each child receives a medal for participating! As you can see in this photo, the kids were wearing their medals after the race!

As the age of the trotter increases, the kids get into the competition of the race! These 6 and 7 year old racers started by stretching!

This was the 6 and 7 year old trot! We use an orange streamer as our finish line and it was adorable to watch the kids hit the finish line. Many of the kids did not want to tear the streamer. It was a riot to watch! We actually had to tell them to run through it! Once we instructed them to do so the rest of the racers got it immediately!

This was the 8 and 9 year old racers flying down the track!!!

By the time we got to the 10 to 12 year olds, they probably had enough energy to sprint around the entire track!

These were the top winners of each of the trots! The top winners received not only a medal to wear but the following:

(1) the 3 and under winner received 4 passes to play mini golf
(2) the 4 to 5 year old winner received a certificate for one week of junior day camp at St. Stephen's and St. Agnes School
(3) the 6 to 7 year old winner received a certificate for one week of traditional day camp at St. Stephen's and St. Agnes School
(4) the 8 to 9 year old winner received a certificate for one week of sports camp at St. Stephen's and St. Agnes School
(5) the 10 to 12 year old winner received a certificate for two day passes to Six Flags Amusement Park

Friday, May 23, 2014

Friday, May 23, 2014

Tonight's picture was taken on April 30, 2006. Check out that big smile on Mattie's face!!! Mattie was thrilled because that day he went with Peter and they picked out a bicycle together. Our outdoor commons area was the perfect space to learn to ride a bicycle, to use side walk chalk, to fly a kite, and to also ride "Speedy Red." Speedy was Mattie's ride-on car that he got when he was battling cancer. Mattie took to driving like a duck to water. Even attached to an oxygen tank, he would zip around the pavement in his car!


Quote of the day: Highly sensitive people are too often perceived as weaklings or damaged goods. To feel intensely is not a symptom of weakness, it is the trademark of the truly alive and compassionate. It is not the empath who is broken, it is society that has become dysfunctional and emotionally disabled. There is no shame in expressing your authentic feelings. Those who are at times described as being a 'hot mess' or having 'too many issues' are the very fabric of what keeps the dream alive for a more caring, humane world. Never be ashamed to let your tears shine a light in this world. ~ Anthon St. Maarten


Tonight's quote resonates with me wholeheartedly! Maybe because it is a philosophy I live by. I am sure to some I would be classified as "highly sensitive" and therefore perceived as "weak." However, if you truly know me, or know anyone who is highly sensitive, then you know WE ARE NOT WEAK! On the contrary, we take in a lot of information, a great deal of feelings, and as a result we most likely can balance more than most people. What I have found out about myself after Mattie's battle with cancer and death is that I prefer to connect with others who are also highly sensitive! It is far more stimulating to know what someone is thinking and feeling, than to go through meaningless tasks and chores. We live in such a fast paced world where people are losing the art of conversation, the joy of being authentic and sharing feelings, and having the courage to trust and connect with one another. It is a shame, because it is only within such meaningful connections that true bonds are formed. 

I went to see my neurologist today. We bantered back and forth about my daily headaches and my migraines. He is perplexed how I function through a migraine when the rest of the world takes to bed or a dark room! I laughed! I laughed because I said to him... "you do what you have to do!" When Mattie had cancer, there was NO WAY I could have relaxed and rested in his PICU room if I wasn't feeling well. Forget it, that wasn't even an option. I have found that I have conditioned my body to push through the pain, and after a while, my body is just used to it. But I know I am not that unusual, and there are others who deal with greater amounts of daily pain. I am happy though that I meet with this doctor now every two months and he updates me on the research and how to help rare cases like people such as myself. But it is helpful to know that taking over the counter medications like Tylenol just won't help me. The research shows this and I clinically can say this is correct! 

As promised, here are more photos from the Mattie Miracle 5th Anniversary Walk! Tonight's photos feature our four adult zany relay teams! Congratulations to our four successful teams who generated in total $6426 for Mattie Miracle!

This is an overview of our four teams! Peter was the MC of the races and we had eight judges. Two for each team! We thank our GREAT judges:

Heidi and Isabel Anderson
Leslie and Mike Greenberg
Dave Holm
Larry Jenney
Emily Owens
Brian Will

Peter and I developed ALL the races that were selected and performed at the Walk. We picked races that were ZANY and fun. Not ones that required sprinting, distance running, and agility! One of the races was called the "Newspaper Train." As you can see Team Foxy Voxy got into the spirit of this one and WON it!

Team Chris was captured here doing the race entitled, "Hooping it up." The goal here was to pass a hula hoop around a circle of 10. However each person in the circle had to step through the hoop without letting go of team members' hands! 

Team Healthy Mothers/Health Babies was captured in the middle of performing the "Shoe Box Race." Mind you we added to this race. Not only was each person sliding in a shoe box, but each racer was also holding a tray that had a cup of water on it. The goal was not to spill the water! 

RCC Moms are champs at the three legged Race!!!! I know Jane and Catherine well, since Mattie went to preschool with their daughters!

Team Chris --  won a Trophy for the #1 Fundraising Team (contributed $2070 to Mattie Miracle)

Foxy Voxy -- won the Go Team Award For Outstanding Team Work and Creativity 

Healthy Mothers/Health Babies Coalition -- won the Super Star Award For Audience Participation, Support, and Cheers

RCC Moms -- won the #1 Medal for winning the Most Relay Races

Thursday, May 22, 2014

Thursday, May 22, 2014

Tonight's picture was taken on April 20, 2002. Mattie was literally 16 days old! I am not sure what was more funny here! The fact that Mattie was bright eyed and focused on the camera or that Patches was sprawled out on the couch not paying a bit of attention to any of us! At this baby stage, Mattie looked more like Peter. However, as we joked, that did not last long. As soon as Mattie reached about four to six months old, he began to look exactly like me. I would go as far as to say that we had similar personalities as well, and we both were emotionally driven and passionate about things. Which is why we understood each other well, we got how we viewed the world, how we viewed people, and we appreciated that about each other!


Quote of the day: Sometimes its not the strength but gentleness that cracks the hardest shells. ~ Richard Paul Evans


I have finally begun to comb through the 500+ photos that were taken from this year's Foundation Walk! I am so thrilled we hired a professional photographer, because I think Herman did a beautiful job. Herman worked with us once before, during our Faces of Hope Walk in 2011. It was important to have him back for our 5th anniversary Walk. He captured parts of the Walk I never got around to seeing!!! Over the next couple of days, I will be sharing photos with you. I hope you enjoy them and you get to relive the Walk with me. 

Herman captured us before we began walking (keep in mind that our first lap was to Dancing Queen--- a Mattie favorite)! Holding the banner with me are Joan Holden (the Head of St. Stephen's and St. Agnes, Mattie's School), the Mayor of Alexandria - Bill Euille, and Emily and Abby Doane (preschool buddies of Mattie's). Right next to Peter and "James the Roach" is Brandon Johnson, Mattie's Big Buddy. Brandon was part of our Honorary Walk Committee this year, along with Joan, the Mayor, Linda Kim (who is wearing an aqua blue jacket on the far right of the photo) and Tricia Grusholt (Mattie's favorite HEM/ONC nurse, who is in pink and standing right next to "Phil the Squirrel" on the right hand side of the photo).

Before we began our Walk, Mayor Bill Euille gave our participants a greeting! 











Mattie Miracle acknowledged the Mayor for his participation and presence with a glass plaque!

Mattie Miracle also gave a special acknowledgment to Joan Holden. Joan is retiring from St. Stephen's after 30 years of service to the School. Though everyone in the community is aware of Joan's achievements as a head of school, we were giving her a leadership award for her service to the Foundation. We met Joan when Mattie was accepted to her school in 2007. When Mattie was diagnosed with cancer, Joan would visit Mattie in the hospital and did everything possible to support him from a school stand point. When Mattie died, Joan continued to reach out to Peter and me. She NEVER forgets Mattie's birthday or an anniversary and writes to us on each of these occasions. She also gives us access to her campus every May to host our annual Foundation Walk. Our annual Walk generates over 80% of our operating budget, therefore, this event is crucial to our survival. In a way, Joan enables all of this to happen because she believes in our cause and mission. For this we are grateful and she will always hold a special place in our hearts. Such loyalty and compassion are not replaceable. 

Pictured from left to right are: Virginia (Vicki's mom), Linda (Mattie's Child Life Specialist), Peter, Vicki, and Karen (Vicki's lifetime friend). 

A good portion of the Walk funds go to endow the Mattie Miracle Child Life Program Fund at MedStar Georgetown University Hospital. The coordinator of Child Life is Linda, and Linda is a person Peter and I will always be grateful to because of the outstanding care she provided Mattie and us. As I always say, if I am sick, I want Linda brought in immediately to provide my care, and I am an ADULT! 

Pictured from left to right are Brandon (Mattie's big buddy, and a Lymphoma Childhood Cancer Survivor), Peter, Vicki, Tricia (Mattie's favorite HEM/ONC nurse), Nicole (Tricia's older daughter), and Virginia (Vicki's mom). 

Brandon is a devoted and loyal friend of Mattie's. These two boys were very different age wise, and yet they got along and understood and respected each other. Though Mattie is no longer with us, Brandon never skips a beat. He comes to every Walk and carries Mattie's memory forward. I will never forget the day Mattie died, Brandon came to the hospital and sat in the PICU room with us. Remember Brandon was a teenager, and he was sitting in a room with a dead body of a seven year old. This isn't easy for an adult, much less someone so young and impressionable. I am not sure everyone knows this about Brandon, but it took a lot of courage to come to the hospital that day, a place where he had been treated himself months before, to come to say good-bye to his friend. A friend who had already died. So in essence he was attending a wake within a PICU room. 

As for Tricia, I will never forget my first true encounter with her. Early on in Mattie's chemotherapy process, we were in his PICU room and Mattie was having a really bad day. He was upset, angry, and lashing out at me. He was pushing me and told me he HATED me. Tricia was in the room for ALL of this. She could have easily walked out of the room or even judged what she was hearing. But she did neither. Instead, she told Mattie that he did not mean what he was saying. Instead she said we were both tired and encouraged us to rest. She escorted us into bed and literally tucked us in together. Mattie took her advice and settled down and I was in tears because the whole thing was beyond toxic and overwhelming. It was in that moment that I saw Tricia's true character. A woman with spunk who also wasn't afraid to advocate for what was right for a patient, even if it meant confronting a doctor or two. Mattie knew he could trust Tricia, we all did, and each time we see her, that feeling some how just comes to the surface. 

New to our Walk this year were themed characters. We had three! Clearly this was Sponge Bob! Played by our friend Tad! Next to Tad is his daughter Bethie. Bethie's brother is Kazu. Mattie and Kazu were good buddies in elementary school and to put it further into context, Sponge Bob's wife is my good friend Junko! 

Mattie absolutely LOVED Sponge Bob. Mattie would have gotten a huge chuckle out of seeing Tad dressed up as Sponge Bob at the Walk! 

This fellow in brown, is James the Roach. Now you could be asking why do we have a big roach at the Walk?! Well James purchased this costume for Mattie's 7th birthday party, which we had at his house. This was Mattie's last birthday, and Mattie happened to love bugs. Our friends James and Christine hosted a party that none of us will forget anytime soon. Beside James dressing up as a roach, they also hired Reptiles Alive to come and entertain the kids. Mattie got to see and touch snakes and other horrific looking things from my perspective. Needless to say, Mattie was partial to James' roach costume, and therefore in honor of Mattie, this costume was worn at the 5th anniversary Walk. Walking next to James is Campbell. Mattie's very close buddy from kindergarten. 

I leave you with this tonight!!! There is much, much more to share. Until tomorrow. 

Wednesday, May 21, 2014

Wednesday, May 21, 2014

Tonight's picture was taken on April 9th of 2002, only five days after Mattie was born. Most likely this was our first day home from the hospital, since we spent the first five days in the hospital with Mattie. This was actually a VERY unusual photo!! You maybe asking yourself why? Well, first Mattie rarely slept and second Mattie NEVER slept in his crib. Certainly not for the first three or four months of his life. Mattie preferred my shoulder or even sleeping in his car seat. Some nights we literally strapped him into his car seat and put the whole car seat into the crib. That was how we would get an hour or two of sleep! But it never lasted long. 



Quote of the day: You can find anyone that will tell you what you want to hear, but the only one worth valuing is the one that tells you what you need to learn. ~ Shannon L. Alder

Peter and I are still downloading huge photo files from the Walk. The professional photos are looking fabulous! We want to share some photos that we or some of our friends took with you tonight! The area featured in this photo was under the Lego Tent. It featured several free build Lego tables, where kids of all ages could build on their own and then there were tables manned by Play Well TEKnologies (http://www.play-well.org/). This company teaches kids the principles of engineering and physics with the use on hands on lego projects. Needless to say, some of the kids were occupied for hours under this tent.

This photo captures some of our poster displays! We tried to consolidate how posters were displayed this year, in a more gallery type of format rather than dispersed around the HUGE track!

Orange is the Foundation's official color, and it was everywhere at the Walk. From tablecloths to merchandise. 

New to the Walk this year was Wacky World! This was a combination moon bounce and obstacle course. Kids could bounce, slide, twist, turn, and do all sorts of stuff inside of there. In fact, today I received an adorable text message from a friend who alerted me that her daughter loved Wacky World so much that she wants to have it for her birthday party! Very cute!

This special threesome is Greg, Jim, and Becca! As our faithful readers know, Becca is the executive chef at Clyde's of Tysons Corner. Becca donates and cooks all the food at our Walk! She is an amazing, talented, and incredibly generous individual. She had back up help this year, which included her husband Greg, her father-in-law, Jim, and Greg's daughter, Rachel. We had the whole family participating and we felt very honored!

Mattie adored Legos. Not only when battling cancer, but he gravitated to them even as a toddler. Which is why we try to feature them at every Walk. This is the fifth year in a row that the WAMALUG and WAMAltc Lego Groups participated in our event and set up their incredible city scapes and Lego Trains. These are works of art, incredibly intricate, and the team's enthusiasm for the work that they do is appreciated by Mattie Miracle! 

Tuesday, May 20, 2014

Tuesday, May 20, 2014 -- Mattie died 245 weeks ago today.

Tonight's picture was taken during the Mattie March in May of 2009. Mattie was surrounded by his cousins. He had a big smile on his face and clearly was enjoying his time out of the hospital and with people who cared about him and wanted to support him. It was a day to be remembered, and it was that day that serves as the backdrop and foundation for all subsequent Walks! 


Quote of the day: Never be so busy as not to think of others. ~ Mother Teresa

Peter and I appreciate so many of the wonderful comments and feedback we are receiving about the Foundation's fifth anniversary Walk! We are still tallying up contributions toward the event and should have a grand total soon, but it is a complex total to calculate because donations for the Walk have been coming into the Foundation since March! This is NOT a just the "day of event" financial total! It makes me very happy to hear that people of ALL ages enjoyed our event, that they felt it was well organized, there were lots of things to do, and that it was hard to tear their children away from certain activities, such as the Legos hands on tent! Wonderful news! I received many compliments this year about the attention to details and the overall flow of the event! One person went so far as to say that it was clear the amount of time and attention paid to logistics, in order to make attendees feel relaxed, at ease, and cared for! The best compliment I could have received!!!

Our professional photographs are starting to come in and we are beginning to down load them! I will organize them and will share them soon. So stay tuned!

This afternoon, I literally was serenaded from Mattie's window. This bird caught my attention with his beautiful voice, so much so that I decided to go outside and look for him. When I looked up, this is what I saw!!!! This wonderful Cardinal. I always loved Cardinals, and they happened to also be Mattie's favorite bird. Then I met Mattie's favorite HEM/ONC nurse, Tricia, and Tricia shared with me her grandmother's philosophy about cardinals. She felt that when you see a cardinal that it is a sign and visit from a loved one who died. I always remembered Tricia telling me that, so when I saw and heard this beauty today, I couldn't help but wonder if this was a message from Mattie. Needless to say I was outside in our complex snapping photos and listening. I swear at one point, this bird was looking at me, as much as I was looking at him!

My parents and I spent the day together. My mom and I went to my zumba class this morning and then we all had lunch at one of Mattie's favorite restaurants in DC. On the way to this restaurant we unfortunately passed the funeral home in which Mattie's cremation took place. Every time I pass that location, I can't help but remember that moment in time. I can remember it as if it were yesterday. Every detail, even the room we sat down in to discuss arrangements. Not to mention seeing coffins and urns, and so forth. The visuals will always remain burned in my head. Even these many years later, and yes they all are triggered just by passing the outside of the building. 


It happened to be a glorious weather day, and despite neglect from sheer preoccupation with the Walk, our garden is thriving! I snapped some photos!

To me our flowers just look happy and when Mattie's fountain is on and flowing, it is a very peaceful spot. 

It is a secret garden in a way, which isn't too secret, in the middle of a ton of buildings! Yet we have been trying to build up a wall of plants to block out the rest of the world. It seems to be quite successful!

Monday, May 19, 2014

Monday, May 19, 2014


Tonight's picture was taken in May of 2007. Mattie was out on our deck and showing off his new, "got lobster" t-shirt! I can't help and pause when I look at this shirt now, because this shirt has been integrated into Mattie's memory quilt. In fact when I see the patch within the quilt, I can remember this particular moment that you see on the deck! Isn't it interesting how the quilt captures these memories and in a way brings them to life in a three dimensional sort of way?! 





Quote of the day: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~ Leo Buscaglia


I may need a few more days to return back to a more normal routine. At the moment I am still exhausted and wiped out from the Walk. Yet as Buscaglia's quote points out, kind words can make all the difference in the world. I received a beautiful email today from one of our newest supporters, Linda. Or as I call her, my "Mattie Miracle Ambassador." Linda was one of our Walk volunteers on Sunday and today, after laundering her event t-shirt, she wore it around town while doing some chores. She enjoyed the event and wanted me to know this, but it is her enthusiasm, her faith in what we are doing, and her belief that we can achieve our goals that truly make me feel supported. A supporter supporting the supportee. How do you like that?! I know I love it!!!

Later today, I received another email from a friend, who I met when our children went to preschool together. She wrote, "Just thinking of you - what an amazing day yesterday! The people, the cause, the activities - the raffle baskets! -- even the weather. You guys do such a great job. I thought of Mattie throughout the day and felt his spirit and your love and care in every detail." 

This email meant a lot to me because I am all about details. Tiny details, especially as it relates to capturing Mattie's memory. Such as playing the ABBA song, Dancing Queen, when the Walk began, to having Legos prominently featured at the event. Mattie LOVED Legos and Dancing Queen was his song of choice when doing physical therapy! I was so happy that another mom noticed and could also feel Mattie's presence with us on that track! I know that I can't be on that track without thinking of Mattie. To me that track is NOT just a track! But it is a place where we rallied in 2009, to help Mattie through his cancer battle. To me his presence will remain there. 

Which maybe why I personally feel that on Foundation Walk days, there can be NO rain! Mattie just won't allow it! Certainly every year there is a threat of rain, and in many cases, we have gotten quite close to being rained out. But in the end, that Mattie sun, always comes out! Mattie just wouldn't let it rain on me, NOT on a WALK day. Call it superstitious or illogical, but to me while everyone else is worried about the weather, this is honestly one thing I truly do not dwell on. I leave it up to Mattie and know he has it taken care of! 

Sunday, May 19, 2014

Sunday, May 19, 2014

Tonight's picture was taken today at the 5th anniversary Mattie Miracle Walk & Family Festival. On the left was a display of Mattie and on the right was a display of his close buddy, Jocelyn, who just lost her battle to Osteosarcoma on April 2, 2014. Both taken too young by a horrible bone cancer. It is 1am, and we have been working since before 6am to get this Walk together and operational today! Then of course once it was over, we had to load the car back up, unload it, and try to disassemble everything and store it back securely in our closets. It is not as if we have a basement and a lot of storage, so I have to pack strategically! I am beyond exhausted and therefore I will write more later. As our professional photos come in, I will post several!

We of course thank ALL our volunteers for their amazing service and dedication and of course all our supporters who believe in our cause and stand behind us..... making our financial goals possible! 

Quote of the day: Wherever you turn, you can find someone who needs you. Even if it is a little thing, do something for which there is no pay but the privilege of doing it. Remember, you don't live in a world all of your own. ~ Albert Schweitzer

Saturday, May 17, 2014

Saturday, May 17, 2014

Tonight's picture was taken in October of 2007. It is one of my favorite photos I ever took of Mattie! On the eve of our 5th anniversary Walk, I reflect on this beautiful face and it reminds me why I kill myself to put this Walk together. Certainly I do it for the health and welfare of the Foundation and to help other children and families. But at the core what always drives me is Mattie's memory. Probably that is my ultimate compass in life, caring for Mattie. Whether Mattie was alive or now this means caring for and protecting his memory through the Foundation. Preserving and respecting that memory are vital to me, which is why every aspect of the Walk and our events are important to me. The details are important, because it is within those details that certain nuisances of Mattie are revealed. 


Quote of the day: There are no shortcuts to any place worth going. ~ Beverly Sills

It is 12:30am, I am exhausted and have to get up in less than 6 hours to get ready to prepare for the Foundation Walk set up. It is hard to believe that this day is upon us! I don't know where the time has gone. We now have my parents, Peter's parents, and my lifetime friend Karen in town! All to help support us through the Walk. There was a ton of last minute things to do today, including loading up the SUV with Walk materials. That alone is a huge operation and production! I feel so much rides upon this Walk, mainly because the Walk provides a good portion of our annual operating budget! So to me Walk season signifies PRESSURE and STRESS. It is my hope at this time tomorrow, I can feel happy about what we were able to accomplish for the Foundation. But in the mean time, please keep your fingers crossed for us. We thank all of our supporters for their kindness and generosity! Without you we would not be able to reach our targeted financial goal!