Saturday, December 3, 2011

Saturday, December 3, 2011

Tonight's picture was taken in August of 2008. As the dry erase board indicated, it was August 24th to be precise. Each of Mattie's hospital rooms had a dry erase board in it. Once Mattie's treatments began, this board would be filled up with all sorts of stats about Mattie. We kept track of every input and output. In fact, our board was so detailed that his nurses no longer had to ask us questions. They would just come in, look at the board, make notes and leave. Which was a major bonus at all hours of the night. If something was going into Mattie, we knew about it. We knew the quantity, how often it was administered, and usually what was needed to combat whatever side effect the drugs could potentially produce. One particular evening, Mattie was in a silly mood, and decided to transform the board with a drawing from his imagination. This was "Mr. Big Head." The problem with Mr. Big Head was the things that came out of his nose. Being a typical six year old, Mattie was into gross things, and that evening, he proceeded to freak me out with his description of Mr. Big Head's "boogers." It was a memorable moment, which was most likely why I photographed it. Understand that during that first month of chemotherapy, we were all on the edge, so times of laughter were welcomed and appreciated.


Quote of the day: Your assumptions are your windows on the world. Scrub them off every once in awhile, or the light won't come in. ~ Alan Alda


It is funny how assumptions you develop while growing up can continue to cloud your perspective even as an adult. When I was growing up, as a teenager, the world seemed more black and white. Or maybe it wasn't necessarily the world's perspective as much as the perspective within my teenage mind. In any case, in my school, you were either a sports oriented person or you weren't. Those of us who weren't sports oriented at times were treated as second tier individuals and to some extent that affected our popularity. Fortunately, in many ways I was born older, and Mattie was this way as well. I did not get wrapped up with who was popular and who was not, and I certainly wasn't going to change myself just to fit into something that I didn't deem important. Therefore, while growing up, it was very evident to my peers that I was NOT a sports person but a dance person. I was viewed as fragile and most definitely not worthy to be selected on a sports team. In fact, in gym class when kids had to pick members of their team, I was always last to be chosen. I was the consolation prize. Rather humbling of course, until others learned that if you needed someone agile to run and jump over things, you really wanted me on your team. With that said, throughout my life I have been utterly turned off to sports and therefore this has also clouded my opinion of those who play sports.

This brings me to tonight's quote. Peter and I had the opportunity today to attend the Georgetown University Basketball team's game at the Verizon Center. As many of our readers know, the Georgetown Business School's "Creativity and Innovation" course adopted Mattie Miracle as their community based learning project this semester. One of the student groups in the class also happen to be members of the University's lacrosse team. As team members they are connected with an organization on campus called HoyaDreams.

The HoyaDreams program is a unique partnership with the Georgetown University Department of Athletics. The goal of the HoyaDreams program is to encourage Georgetown student-athletes to reach out to chronically ill children and their families and make a difference in their lives. The Hoya Athletes will spend time with Georgetown University Hospital's pediatric inpatients, and spend time bringing them to Georgetown athletic games. For the current inpatients, these visits will help them feel special and hopefully motivate them to work towards the goal of getting well and out of the hospital. For the patients who have finished their treatment, it will serve as a reward for their taxing and difficult medical treatment. http://m.georgetownuniversityhospital.org/documents/pediatrics/childlife/HoyaDreamsbrochure.pdf

So the lacrosse students in this business school class connected Mattie Miracle to HoyaDreams, and today, we journeyed with them to the Verizon Center, in the heart of DC, and escorted eight children who are being treated at Georgetown's Hospital with their families to the game. While at the game, I had the opportunity to interact with these lacrosse players and observe how they cared, looked out for, and connected with the children. The lacrosse players served the kids lunch, gave them high fives, talked with them, and made them feel special. So these young men changed or "scrubbed" away my assumptions about athletes and sports in general and they shed a new light on the picture.

I have never attended a basketball game in my life. The Verizon Center is huge and there are flashing and animated signs everywhere. In fact one sign was an advertisement for the acela train, and literally there was a train going around the entire perimeter of seating on the screens. Mattie would have loved this! He also would have appreciated the advertisement for BED BUGS!!!! Literally just like the train, there were computerized bugs walking across the screens. I took that as a sign from Mattie, because it reminded me of our days within the hospital!


During halftime, the children, Mattie Miracle, and the University lacrosse athletes were invited to center court. This was quite an operation to get our group from our seats down to the court area. The kids were excited and nervous because going in front of hundreds of people can be intimidating.

While journeying down to the court, I had the opportunity to talk to several children before the experience. Some got very scared walking out into these bright lights with crowds of people all around them. They jumped into their parents arms. However, as the experience continued, they started soaking it all in. Keep in mind that while we were walking out and standing there, an announcer was explaining who we were and why we were there.

Peter and I were center court at the Verizon Center with the children, their families, and the members of the lacrosse team.

It was hard to capture all of us, but Katie (one of the Hospital's childlife specialists on point today) was kind enough to snap pictures for me with my camera. She did a great job of capturing the excitement! Toward the right hand side of the line up are all the lacrosse players associated with HoyaDreams who helped make this outing happen today.

Mattie Miracle was given the opportunity to share our logo with the fans today as well as some pictures and information about us. Here is a camera shot of the large screen above our heads with our logo.

While the announcer was telling the audience about us, pictures of Mattie and of our Foundation events flashed on the screen. I can safely say that Mattie made it to the Verizon Center! I am not sure how many people can say in their lifetime that their picture flashed on the Verizon Center's big screen? Mattie would have been thrilled and if it weren't for Mattie, I would never have had this experience today.

 

While we were on center court, here was what the announcer read.......

Fans, please turn your attention to center court where Georgetown Athletics will like to welcome the members of Hoya Dreams and the Mattie Miracle Cancer Foundation.

HoyaDreams is a unique partnership between the student-athletes, Georgetown Athletics and Georgetown University Hospital Pediatrics. In conjunction with Georgetown University Hospital’s Child Life Program, Hoya Dreams pairs Georgetown student-athletes with children treated at Georgetown University Hospital Pediatrics.

Through Dream Days, these children who are undergoing treatment are brought to campus for an afternoon to interact with student-athletes and attend an athletic event.

Through Hoya Visits, student-athletes make a trip to engage with current patients in Georgetown University Hospital Pediatrics on a regular basis to provide motivation and support during their stay.

The Mattie Miracle Cancer Foundation is a non-profit, founded by Peter and Vicki Brown in the memory of their son Mattie who passed away from bone cancer at the age 7.

Mattie was treated at Georgetown Hospital, and because of the excellent care and treatment Mattie received while at Georgetown, the Mattie Miracle Cancer Foundation raises funds to support programs that help other kids facing cancer.

Mattie Miracle’s mission is to support the psychological, social and emotional needs of children and their families fighting childhood cancer.

The Foundation is proud to be partnering with HoyaDreams, the McDonough School of Business at Georgetown and Georgetown Hospital’s Childlife Program, to help bring these kids and their families to the game today. Please put your hands together for these courageous children and their mentors.

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This was an incredible experience for many reasons. The primary reason was I got to see smiles on the faces of these children. Actually they were so happy and thrilled at the end, that it brought tears to my face. It was overwhelming. One little boy said to me...... "It was AWESOME, the best thing I have ever done!" Seeing his facial expression was almost as priceless as his words!

We are very grateful to these lacrosse players for helping us make this meaningful connection to HoyaDreams, and naturally always to Linda (Mattie's childlife specialist), who helps us behind the scenes to make sure Mattie Miracle is prominently represented. For those of you who are interested Georgetown won the game. In fact it was a significant win against the New Jersey Institute of Technology.

 

We walked to the Verizon Center today. So round trip it is about 8 miles. Along our walk home, we passed the Nation's Christmas tree. The one aspect of this display that Mattie always LOVED were the trains. As usual the trains did not disappoint this year and all the 50 smaller trees (representing our 50 states) that surrounded this larger tree were quite beautiful.

I am ending tonight's posting with a message from my mom. My mom wrote, "You have made great strides in presenting Mattie Miracle's good works to the public. The 8 children who attended the basketball game through the Foundation and Childlife will have wonderful memories of being together at a happy event just before the holidays and it will counterbalance the daily grind of sickness by giving these deserving children a brief respite from doctors, hospitals, medical protocols and all the intrusiveness of treatment that they have had to endure. They are indeed like survivors of war with deep battle scars that have lasting, unimaginable effects on the body and soul and it is owing to your interaction with the Business School at Georgetown University that they will be honored during a half-time appearance with their families before the audience at The Verizon Center. It is a fitting acknowledgement of their personal victories over their dread diseases and a wonderful opportunity to once again draw attention to the important mission of the Mattie Miracle so that like ripples in a stream the waves of enlightenment about the need to rehabilitate the victims of pediatric cancer will generate an ocean of good will! Kudos to Georgetown University for having educators like Bob with vision, creativity and heart to inspire a new generation of caring innovators!!"

Friday, December 2, 2011

Friday, December 2, 2011

Tonight's picture was taken in August of 2008, right outside Mattie's hospital room. Linda, Mattie's childlife specialist, set up a painting station right in the PICU hallway. I am posting this because I wanted you to see what Mattie decided to paint during his first hospital admission. He painted the sun, which was bold and yellow, and then next to it something that looked like the earth. It is no wonder that the sun became an important symbol to represent the Mattie Miracle Cancer Foundation.

Quote of the day: We grow by love.... others are our nutriment. ~ William Ellery Channing


Today we celebrated Mary's (Ann's mother) birthday. I met Mary in December of 2008, at a birthday party Ann hosted for her at her house. When I met Mary, her son had already died from cancer, and Mattie was five months into his battle. I distinctly recall going over to introduce myself to Mary. At first my name did not ring a bell, but then I told her that I was Mattie's mom. I did not need to say anymore, she immediately put two and two together and grabbed a hold of my hand and started talking to me. In fact, whatever she said to me that day got me crying and it took a while for me to regroup that afternoon. That was our first introduction to each other, an introduction that seemed to bond us together. We are naturally differently people and generations lie between us, and yet having a son who died from cancer cuts through any differences.

Pictured from left to right: Vicki, Mary, and Shayla (Mary's caregiver)

We first took Mary out to get her hair done. Mary has her hair cut by the same lady, Theresa, each time. When Theresa found out that it was Mary's birthday, she started dancing. It brought a smile to all our faces. Which brings me to tonight's quote. We do grow by love. Even simple acts of kindness and love, as shown by Theresa today!

At lunch, I took a picture of Ann with her mom. As I told Mary today, this is her fourth birthday that I have celebrated with her, and yet it seems like we have known each other much longer.










As the day evolved, so did my mood. I do not feel like elaborating on it. So instead I wanted to end with the answers to the genius test I posted last night. I know some of you emailed me between yesterday and today about this test and some of you really got me laughing!

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Genius Test (mind you this is the kid version)

Directions: Find the words that fit. Example: 16= O in a P.
You need to figure out what the "O" and the "P" stand for. In this case the answer is 16 Ounces in a Pound.

1) 26 = L of the A (Letters of the Alphabet)
2) 7 = D of the W (Days of the Week)
3) 31 = F at B R (Flavors at Baskin Robbins)
4) 101 = D (Dalmations)
5) 52 = C in a D (Cards in a Deck)
6) 7 = W of the W (Wonders of the World)
7) 88 = P K (Piano Keys)
8) 13 = S on the A F (Stripes on the American Flag)
9) 365 = D in a Y (Days in a Year)
10) 18 = H on a GC (Holes on a Golf Course)
11) 90 = D in a R A (Degrees in a Right Angle)
12) 200 = D for P G in M (Dollars for Passing Go in Monopoly)
13) 50 = S in the U (States in the Union)
14) 3 = B M (S H T R) (Blind Mice, See How They Run)
15) 4 = Q in a G (Quarts in a Gallon)
16) 24 = H in a D (Hours in a Day)
17) 4 = W on a C (Wheels on a Car)
18) 1 = H on a U (Horn on a Unicorn)
19) 60 = S in a M (Seconds in a Minute)
20) 9 = P on a B B T (Players on a BaseBall Team)
21) 40 = D and N of the GF (Days and Nights of the Great Flood)
22) 28 = D in F (Days in February)
23) 64 = S on a C B (Squares on a Checker Board)

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Thursday, December 1, 2011

Thursday, December 1, 2011

Tonight's picture was taken in November of 2008. This was just days after Mattie's second limb salvaging surgery and though confined to his bed (which works beautifully for an active six year old!), Linda (Mattie's childlife specialist) and Jessie and Jenny (Mattie's art therapists) devised a game to entice Mattie to use his right arm (the arm that was previously operated on a month before). The game involved fishing! They knew Mattie liked to go fishing with Peter, so they decided to bring the fish to him instead. The bin that Jenny was holding represented the tank filled with fish. Inside the tank were all sorts of pop-it plastic pieces to represent water and then in and amongst the water pieces were plastic fish that had a magnet on the end of each one. They created a magnetic fishing pole, and literally right on Mattie's bed, he was throwing his fishing line into the tank to retrieve magnetic fish. These women worked very hard to engage Mattie, to keep him talking, and to feel empowered and important. At times their efforts seemed super human which is why I unofficially nicked named them Mattie's Angels (Charlie had his angels and so did Mattie!).


Quote of the day: Exploration is really the essence of the human spirit. ~ Frank Borman


This morning I had the opportunity to attend Dr. Bob Bies' "Creativity and Innovation" business school class at Georgetown University. On September 8 and November 17, when Peter and I attended those classes, it was related to Foundation content. Today, I was able to observe and participate in the class as a student, and then in the last 15 minutes of class, a Georgetown Business School reporter came in to interview us and the students. She then took a photo of our entire group. This is a story worth telling, not only because it is about childhood cancer and Mattie, but because Peter is a graduate of this business school and Bob was his professor. Now years later, this professor-former student team reunite to stimulate a new generation of young minds and connect them with a real life community example.


When Peter was attending business school, he spoke often to me about Bob. There are some professors who stand out in our educational experiences, and Bob was one of those educators for Peter. I naturally absorbed that fact, but not sitting in on his classes or having met Bob while Peter was going to school, I had no personal insights. It is quite ironic that years later, here I am sitting in a business school class and watching Bob in action. Bob is a born educator and what captures my attention about him is his passion. He is passionate about his subject matter and connecting with his students. In fact, as I was sitting in class today, I thought to myself.... maybe I could have been interested in business if I had been introduced to a professor like Bob. What intrigues me about Bob is that his class has a psychological component to it. After all, you can't successfully work in a business or help a business if you do not understand your co-workers or your clients. Relating to your clients and thinking outside the box to deliver a product really speaks to me. To me these are also crucial factors in developing a solid counseling relationship.

Bob always begins his class with a fun exercise to get his students to think creativity. Today's exercise was entitled, "The Genius Test." He gave us several minutes individually to complete this task. This is a task right up Peter's alley, but not necessarily mine. I can think creativity, but I am better without parameters. If Peter were sitting next to me, he would have gotten the majority of these right away. Nonetheless, I actually had a good time with these, but I am quite certain as we age our ability to be facile with this kind of information dwindles. Whereas the college students are able to easily play right into this. Which is important. Stimulating this kind of thinking definitely puts you in the right framework as you begin participating in the class session! Needless to say, I thought some of my readers may get a kick out of this test, so I typed it in below. I promise to give you the answers tomorrow night! Enjoy!

--------------------------------------------------
Genius Test (mind you this is the kid version)

Directions: Find the words that fit. Example: 16= O in a P.
You need to figure out what the "O" and the "P" stand for. In this case the answer is 16 Ounces in a Pound.

1) 26=L of the A
2) 7=D of the W
3) 31=F at B R
4) 101=D
5) 52=C in a D
6) 7=W of the W
7) 88=P K
8) 13= S on the A F
9) 365=D in a Y
10) 18=H on a GC
11) 90=D in a R A
12) 200=D for P G in M
13) 50=S in the U
14) 3=B M (S H T R)
15) 4=Q in a G
16) 24=H in a D
17) 4=W on a C
18) 1=H on a U
19) 60=S in a M
20) 9=P on a B B T
21) 40=D and N of the GF
22) 28=D in F
23) 64=S on a C B
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After this genius test, Bob then showed the class a video clip from the movie, Apollo 13 (http://www.youtube.com/watch?v=kAmsi05P9Uw). A movie I am quite familiar with. He showed the class the scene in which Tom Hanks and his crew members discover there is a problem and the shuttle is leaking their oxygen supply into the atmosphere. In other words, it was the segment in which the famous line... Houston we have a problem.... was delivered. As a former undergraduate educator, I am well aware of the power of movies and video clips to capture the minds and attention of my students. This clip today was used quite effectively, because it set up the discussion of...... what makes one a good leader!? NASA couldn't just guess and come up with solutions. They had to intelligently think this problem through and work as a team to bring these men home from space.

The class discussion fascinated me, because I was hearing all sorts of ideas flowing about what they feel constitutes an effective leader. Some of the thoughts that captured my attention were:

What makes a good leader?
1) allowing others on your team to think creativity
2) finding meaning in what you are doing (that one's tasks are not done just because that is part of your job, instead what drives you is your personal mission and convictions)
3) asking questions and not being afraid to ask questions
4) taking risks
5) having persistence
6) tolerating ambiguity


Bob then discussed with the class the challenges of starting a new business. He mentioned that so many new businesses flop and are not sustainable, in addition, he also mentioned that many people may want to start a business, but because of the lack of leadership skills mentioned above, the ideas never materialize. What I was taking away from this conversation is what Peter and I have really done is established a new business. Naturally my readers are probably saying.... of course Vicki, what do you think Mattie Miracle is?????!!! To me Mattie Miracle is an extension of my baby, so I do not think about it in business terms, but while sitting in class today, I stepped back and said indeed we have created a business and what Bob is saying to us indirectly is you have done something that not everyone has the strength, courage, or skills to do. So I take this as a huge compliment!

When the business school reporter came into the classroom, she posed a question to the students and went around the room for answers. Her question was..... how has working with Mattie Miracle this semester influenced you? Here are some of the responses I captured......

1) It was exciting to be able to apply business concepts to a real life example.
2) We had the opportunity to think big and have the freedom to develop different strategies for Mattie Miracle.
3) Mattie Miracle has a huge emotional component associated with it. By helping this non-profit, we are in essence reflecting the true mission of the University.
4) Working with Mattie Miracle has helped change my perspective on work and life. It is the first class I talked about when I went home for Thanksgiving break.
5) Having the chance to see a sick child's face "glowing" with excitement over coming to a University sporting event was special.
6) Learning about the challenges of starting a new business was enlightening.
7) Having the opportunity to go to the Hospital and see children who are sick was important and humbling.

I end with a thought. Bob gave his class the quote that I used tonight on the blog. Exploration can come in many forms. For Peter and I, our exploration was the development of the Mattie Miracle Cancer Foundation. This exploration could not have happened without being deeply tied to our spirit. In our case, our human spirit is guided and motivated by the seven year journey we had raising Mattie. Which is why during challenging times with the Foundation, we always go back to what grounds us..... and that is of course our son and using what he taught us to help others.

Wednesday, November 30, 2011

Wednesday, November 30, 2011

Tonight's picture was taken in October of 2008. Standing next to Mattie was his big buddy Brandon. Brandon was diagnosed with lymphoma and began treatment about a month after Mattie. Mattie and Brandon lived in the PICU together for months and though there was a significant age difference, these two fellows got along very well. In fact, Mattie really did not associate or play with any of the other patients on the floor. But Mattie allowed Brandon into his life. Though Brandon was sick himself and went through painful and horrific treatments, Brandon always mustered the energy to be kind, compassionate, and caring toward Mattie. Mattie related to Brandon and I know Mattie felt he could trust him, and that Brandon truly understood how Mattie felt. Which is why, Brandon will always be a special person to Peter and I. He was a true friend to our son, in a time when he really needed a friend to play with, talk with, and even be sad with. What I love about this picture was the dueling IV poles. Brandon has an artistic side to him and created some fascinating pieces while in treatment. One of the pieces he created was what I would call... "Wall-E IV pole." Wall-E was that animated movie character, who was popular in 2008. Mattie loved the movie entitled Wall-E, and when he saw Brandon's creation, he too wanted something on his IV pole. So Mattie went to clinic one day and decided to create the Hungry Caterpillar and velcro it to his IV pole, so that he could match Brandon's pole. But here is the touching part to all of this. When Brandon's treatment ended, he came to visit Mattie before leaving the hospital and Brandon gave Mattie his Wall-E creation so Mattie could use it on his IV pole. From that day forward, the Hungry Caterpillar came off of Mattie's IV pole and was replaced with Brandon's Wall-E creature. I think this is a beautiful story of connections and sharing between friends. Friends of different ages, but friends connected by their cancer battle.  

Quote of the day: When I am happy, I see the happiness in others. When I am depressed, I notice that people's eyes look sad. When I am weary, I see the world as boring and unattractive. ~ Steve Chandler

My friend Charlie sent me this quote today, and as soon as I read it, I basically said.... this is brilliant. Whether we are cognizant of it or not, we do experience each day based on how we are feeling. Our moods influence our perception. When we are happy, it influences how we interpret people's thoughts and actions around us, and typically when happy we are most likely to put a positive spin on our observations. Naturally quite the opposite happens during a sad mood. On a sad, down, or depressed day, everything looks and seems blue and hopeless. I firmly believe in what this quote is saying and I know when I was a mental health educator, I tried to get my students to step out of their own framework and place themselves in the shoes of the person sitting in front of them. Understanding a person's perception of the issue or concern at hand is crucial. It is only through understanding that perception, will you be able to evoke or help produce change.

I began my day at the dentist's office. When I went six months ago, I had a horrific experience. My usual dental hygienist, Libby, was away and they reassigned me to someone who wasn't familiar with my sensitivities. It was such a bad experience and the pain was so intense, that when I was paying my bill after the appointment was over, I spoke my peace to the front office staff. This dentist office is an experience. It sits right in the heart of DC, it uses high tech equipment, the atmosphere in the waiting room is geared toward relaxation (since there are many of us high strung types walking the streets of DC) with candles, sounds of flowing water, and so forth, and the dentists are highly regarded in their field with awards posted all over the place. So with that kind of atmosphere, I do not expect to have an appointment where the hygienist and I are combative. So in May, I made it quite clear that I never wanted to see that hygienist again and told them that if for some reason Libby couldn't see me, I should be alerted to this and reassigned another appointment time.

When I saw Libby today, I told her about my experience in May. Needless to say, my cleaning today was painless thanks to her, who uses an ultrasonic cleaner (which literally seems like a power water spray which blasts tartar from one's teeth) before having to manually clean my teeth. This pretreatment makes a HUGE difference! In addition, through the use of a small laser (the process is called Diagnodent) she was also able to detect any tooth decay. To my great joy, I have learned that bite wing x-rays are now becoming a thing of the past, as new digital technology is taking over. Whoever discovered this new process should get a medal, because giving me oral bite wing x-rays has always been a painful process in which I usually land up crying. Since sedation dentistry is SO common now, I have deduced that I can't be the only one with these types of sensitivities. But bringing this tooth conversation back to my earlier point (which is understanding someone else's perspective), Libby said to me today that before she does anything to a patient, she first asks herself, "how would I feel if this was happening to me?" That is actually an excellent question, because if you can stop and assess that first, then chances are whoever you are working on or talking to, will have a much better experience. Seems to be my motto of the day.... perspective influences one's experience. If my perspective is that I perceive Libby, or my doctor, to understand me, then chances are my experience will be positive. 

In the afternoon, I visited with Ann and while running around town, we bumped into our friend, Carolyn (the Walk's raffle chair). A rather small world indeed. Carolyn and I are already focused on this year's raffle at the Foundation Walk, and I prepped her for the fact that we will be going full force on this in January! The rest of the day seems like a blur, since I am not feeling well tonight.

Tomorrow morning, I have been invited back by Prof. Bob Bies to attend his Georgetown Business School class. There is a campus reporter who wants to interview Peter and I, and the class. It makes for a powerful story especially since Peter is a Georgetown graduate. In addition, one of the student groups we met on November 17, has connected Mattie Miracle to the University's Hoya Dreams program (this is a student athlete program which basically provides wishes to sick children at Georgetown's Hospital). This coming Saturday, Georgetown University is having a basketball game at the Verizon Center, and at half time, our Foundation will be featured. There will be announcements, a video presentation, and Peter, myself, and several children being treated at Georgetown will go out on the center court and greet the fans. Not being a basketball person (or sports person at all) this whole experience will be beyond novel to me! I am very impressed with the persistence and innovative ideas these students are generating and I am amazed that in a short period of time they have taken their ideas and brought them to life!

Tuesday, November 29, 2011

Tuesday, November 29, 2011 -- Mattie died 116 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie was visiting his close kindergarten buddy Campbell. Campbell and Mattie had a good time together that day and as you can see they were very proud of their Halloween cookies! While Mattie was with Campbell, Christine (my friend and Campbell's mom) gave me some time to myself. These precious moments to regroup were not only needed but were priceless. Christine gave me several times like this, in which she invited Mattie over to play with Campbell and his sister, Livi. She even had Mattie over when he couldn't walk or do much for himself. During those times, Christine carried Mattie around the house, and when she retells her experience doing this we usually both land up in tears. Because by that point in time, Mattie was barely eating. While her children were eating up a storm, Mattie would sit there and watch them, but he really couldn't eat. He couldn't eat because the cancer had taken over his body. Yet being with his friends was important and also playing with children his age was also crucial, since Mattie spent most of his days and hours with Peter and I. There was something very angelic about holding Mattie when he was so sick. He was full of pain, and yet usually never made a peep about it while you were carrying him. He would hold onto to you very tightly, like a monkey wrapping himself around you. I can picture it as I am writing this, and even the thought of these fragile moments bring me to tears.

Quote of the day: Every action in our lives touches on some chord that will vibrate in eternity. ~ Edwin Hubble Chapin


As it is Tuesday, it marks another week we are without Mattie. Each season brings about its own sources of pain regarding this loss, but somehow Christmas magnifies these feelings. Peter and I haven't decorated for Christmas since December of 2007, it seems so long ago, I can't even really remember what our home was like pre-cancer. To me Christmas must be felt within one's heart, and to me, that portion of my heart died in September of 2009. I know Christmas is coming because I can see the calendar and I am surrounded by visual signs of the holiday at malls, people's houses, and the ringing of the Salvation Army bell at most grocery stores. Yet for so many, not just Peter and I, this is not a happy holiday season. Whether it be because of a loss, an illness, or financial hardships.

Fortunately on Tuesdays, which are hard days in general, I attend a zumba class. If I could go to this class everyday, it would probably be good for me. It gets my body and mind working, interacting with people, and it gets me out of my home. Our instructor introduced us to a new routine today! The routine itself was great, but that isn't what caught my attention. What caught my attention was the dance was choreographed to ABBA's Dancing Queen. For my faithful readers, you know that this was Mattie's favorite song to do physical therapy to at the Hospital. I can't hear that song without thinking about Mattie, and when I heard the song, I told Jenny, our teacher, that Mattie would have approved. Keep in mind that Jenny was a mom I met when Mattie was in kindergarten. Her daughter and Mattie were in the same kindergarten class. Here is another person Mattie has connected me with. The connections are overwhelming if you start adding them up.

After class, I met up with Ann. Those of you who have been reading this blog since its inception, know that after Mattie died, I spent most of my days with Ann. In fact, from 2009 to 2010, I practically lived more at her house than my own. As more time lapses since Mattie's death, it becomes harder for me to sometimes integrate into Ann's life because, like how I used to be, she is very invested in raising her children. As such, it can be hard to absorb what an intact family is like, the excitements of children typically developing and growing, and the joys and frustrations that parenthood can bring about. Naturally Ann and I have been through a great deal together and I always want for her happiness. Yet I am only human, and at times I get upset that I too can't share in the life that I once led. That I can't have what she has, a healthy and an alive child. These emotions can be very intense and they can also impact my friendship. Certainly these feelings aren't easy for me, but they also aren't easy to be the recipient of either. However, when I get locked down in my feelings, I make certain assumptions, assumptions which do not always match reality. Whether Ann realizes it today or not, she said enough for me to realize that she is aware of my pain, and yet misses our time together. Our friendship is different from most because we are very tied and linked together by Mattie, his battle, and his death. These are huge emotional ties that bind us, but they can also be huge weights all at the same time. I realize my life is different from Ann's and yet despite these differences she reaches out to me to decorate for Christmas and in other ways. Christmas is so far from being a part of my life, however, finding a way to connect with my friend in a meaningful way is important to me.

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I hope you are both doing well, and that you are finding joy in little unexpected things. I miss you both. Thinking of you this Tuesday and everyday."


The second message is from my friend and colleague. Nancy wrote, "I spent time reading and making notes of those particular items which touched my heart. Your combination of thoughts, feelings, descriptions, and pictures bring a vividness to your writing. I often imagine myself walking down Roosevelt Island's paths with Peter and you. I imagine Mattie feeding the ducks, an occurrence that my Cindy and Dad used to do when my parents lived at their house in Manhasset Hills. She was so in to ducks that one time when we lived in Laurel, Maryland and friends had come for a visit, I decided to make a duck for dinner. It was a favorite of her father's and I wanted to try something different. She never asked what the bird was until later when she overheard us talking. We lived in a first floor apartment, at the time, with access to the playground right outside our door. Anyway, she heard the conversation, began crying and said, "You killed my friend" and ran out the door. It was so authentic! It is a shame that so many never experience this feeling and its depth or they lose it because of life's happenings. Mattie attempted this authenticity each time he pushed ahead during his illness. I was often amazed at how he tried to minimize his pain and experience by giving a smile to the camera. Your descriptions of the times then make it all the more poignant to realize the strength (of course, Mattie would love the color red, as that is what it symbolizes) of this brave little boy. Your recounting of the rules of non profit status with the post office system brought back memories. I remember sitting in our synagogue when I was younger, making sure that we had our bundles properly sorted and tied. We used a meter machine and then it was off to the post office. This may have been a grueling process, however, there is power in your education. Now you are armed for the time when the Foundation will be sending 200 pieces of mail at a time and it will be worthwhile to use this accommodation. For so many, they tend to give up when something requires spending more time and it not working out. It reminds everyone that many a success came on the heels of many failures. We usually focus on the success and forget about all the work involved in getting to that point. That is what makes Peter and you so terrific. You don't give up! You never did when Mattie was alive, healthy or ill and most definitely, you didn't give up after his death. You do go on, no matter what. Even with Peter not feeling well or you having a migraine, work is constantly happening for both of you. Your commitment to Mattie is that sincere and complete. That is why Mattie picked you for his parents. He knew that he would need two very strong and committed people to help him on his journey."

Monday, November 28, 2011

Monday, November 28, 2011

Tonight's picture was taken in November of 2008. Mattie wanted to start decorating his hospital room early for Christmas. In Linda's (Mattie's childlife specialist) usual fashion, she knew exactly what would get Mattie's attention and cheer him up. She gave him strings of colorful lights to put up around his room. At night, we would turn off all the lights in the room, and just have the colored lights aglow. Needless to say, Mattie's room was very popular that season, because despite it being filled with hospital equipment, it looked joyful. Or as joyful as one can make a PICU room. You can also see behind Mattie that there are origami cranes hanging from the ceiling (all 1000 of them) and a set hanging from Mattie's IV pole. These praying origami cranes were painstakingly made by hand by my friend Junko and her mom. You should note that with each fold of the origami paper, a prayer was said. So there were many positive thoughts that went into the creation of these birds! Mattie loved the cranes and they came with us on each hospital admission. In fact the set on his IV pole was actually a conversation piece. As we would roam the hallways of the hospital, people always stopped Mattie to ask him about the cranes. These colorful birds seemed to symbolize Mattie's character and personality. Both sets of cranes remain in Mattie's room at home even today and they hang from his ceiling.


Quote of the day: We have stopped for a moment to encounter each other, to meet, to love, to share. This is a precious moment but it is transient. It is a little parenthesis in eternity. If we share caring, lightheartedness, and love, we will create abundance and joy for each other. And then this moment will be worthwhile. ~Deepak Chopra

We have concluded after much investigation and after completing the first round of the non-profit stamp application, that this form of postage is not cost effective for Mattie Miracle. What an education we have received over the last few weeks. I could say that we wasted our time on the application (which by the way was approved by USPS) process and on running back and forth to the bulk mail center of Arlington, but in the end we learned about non-profit postage and can now say very confidently that it doesn't work for us. In order for this to be cost effective, Mattie Miracle would have to do multiple mass mailings (200 envelopes of more) more than once a year. I had no idea that once we qualified for non-profit postage status, this wouldn't apply to every envelope I wanted to mail out. It only applies to 200 items or more at a time. So the envelopes I mail out weekly, which are time sensitive, wouldn't qualify for the non-profit postage rate, because of their small quantity. So in essence by the time we pay the start up fee and the annual fee for non-profit status, we are really saving no money. We would only be saving money if we had multiple bulk mailings in a given year. So at least we assessed this issue and resolved it.

Later in the day, Peter and I went for a walk on Roosevelt Island. Peter isn't physically feeling well today and in addition, we are both in a Post-Thanksgiving saddened state. Roosevelt Island however, did not disappoint today. Our first sighting was the wonderful Great Blue Heron who seems to love this particular perch. He is usually on it each time we visit the Island.

The Island was quiet and peaceful today with very few people. It is actually the best way to see the Island. As we were walking, I tend to look around and even up, but typically not down. However, fortunately Peter was looking down on the boardwalk, because right in front of us was this lovely Praying Mantis. Now here is a BUG Mattie would have loved to see! This was a first for us on the Island. The praying mantis is named for its prominent front legs, which are bent and held together at an angle that suggests the position of prayer. By any name, these fascinating insects are formidable predators. They have triangular heads poised on a long "neck," or elongated thorax. Mantids can turn their heads 180 degrees to scan their surroundings with two large compound eyes and three other simple eyes located between them.

I came armed today with a sleeve of crackers. When the ducks saw me, they came swimming and flying over. To me there is nothing like feeding the ducks. I used to enjoy this when I was little, and though I am an adult, I still enjoy it just as much. I snapped this picture of these ducks, because I love how three of them were resting with their heads tucked into their bodies.

Toward the end of our walk, we were surprised by this beautiful Pileated Woodpecker. I have been going to the Island for years, but it is only this Fall, that I have seen these wonderful creatures! They are huge birds and I just love the way he uses his beak to hit the wood, it literally sounds like a hammer hitting a tree, rather than the constant peeking one is used to hearing from smaller woodpeckers. If this sighting wasn't enough, we were greeted by four deer at the end of our journey. One was a large buck with antlers. They ran away when they saw us coming, otherwise, I would have been snapping pictures. There is something special about going to Roosevelt Island for us. It is in the middle of the city, and yet it is a retreat that is so needed on many days when grief has simply over taken us.

Sunday, November 27, 2011

Sunday, November 27, 2011

Tonight's picture was taken in November of 2008 in Mattie's PICU room. As you can see Mattie's right leg was all bandaged up, as was his left arm. I did not photograph his IV pole, his pain pumps, or drains. But Mattie looked like an octopus hooked up to all sorts of things. Despite the magnitude of his surgery, the pain he was in, and the fact that he was immobilized, I remain in amazement at that beautiful smile. He smiled, even when there wasn't much to smile about.



Quote of the day: The ultimate measure of a man is not where he stands at moments of comfort and convenience, but where he stands at times of challenges and controversy. ~ Martin Luther King, Jr.


Peter went for his weekend morning walk on Roosevelt Island and when he came home he shared some wonderful pictures with me. Like on Thanksgiving, he saw a pileated woodpecker again, except this one did not flinch at Peter's presence and as the woodpecker was creating a large hole in this tree trunk, wood debris was flying all around Peter.

I think Peter did a wonderful job capturing this regal cardinal sitting in the tree. I have tried snapping pictures of cardinals on the Island before, but usually to my disappointing they fly away in the process. Mattie and I both loved cardinals, perhaps because red is our favorite color, or because they have a very distinctive call. 

This afternoon, Peter and I walked for several hours around Washington, DC. Our first stop was to the see the Martin Luther King, Jr memorial. Though this memorial opened months ago, because of crowds we avoided going. Today was the perfect weather day for walking and touring around. The memorial is very distinctive and symbolic. When you enter the memorial you are greeted by a boulder, which is otherwise known as the Mountain of Despair, broken in half.

At the entry portal, you see the Mountain of Despair which is two stones parted and a single stone wedge is missing. This wedge has been pushed forward toward the horizon. The missing piece of what was once a single boulder now sits to the right of this picture (the wedge is called the stone of hope). The smooth insides of the Mountain of Despair contrasts the rough outer surfaces of the boulder. Beyond this entrance portal, you see the missing part of the boulder which has been pushed forward and on it bears a sign of a great monolithic struggle.

The Mountain of Despair, through which every visitor will enter, signifies the struggle of Dr. King's journey and ends with being released into the open freedom of the plaza. The solitary stone (pictured below, which symbolizes the path he blazed through the Mountain of Despair) is called the Stone of Hope, from which Dr. King’s image emerges, gazing over the Tidal Basin toward the horizon, seeing a future society of justice and equality for which he encouraged all citizens to strive.

On the side of this stone, the theme of hope is presented, with the text from King's famed 1963 speech cut sharply into the stone: "Out of the mountain of despair a stone of hope." On the other side are inscribed these words: "I was a drum major for justice, peace and righteousness,” a statement suggested by Dr. King himself when describing how he would like to be remembered.

The following information comes from the Memorial's webpage......The element of the memorial which truly captures Dr. King’s legacy is the Inscription Wall – this element transforms a mere monument into a living memorial. Fourteen of Dr. King’s most notable quotes are engraved on a 450-foot crescent shaped granite wall. The quotes span the too-short career of Dr. King, the earliest taken from his rise during the Montgomery Bus Boycotts in Alabama, 1955. The latest quote, appropriately, was taken from his last sermon delivered in Washington, DC at the National Cathedral in 1968, four days before his assassination. The quotes are not placed chronologically, allowing any visitor to begin reading from any location within the memorial, not requiring them to follow a defined path. The quotes selected are those which are most representative Dr. King’s universal and timeless messages of Justice, Democracy, Hope and Love. None of the inscriptions are from King’s “I Have a Dream” speech, for several reasons. Primarily, the entire memorial design is derived from King’s most memorable speech; given the limited room for sharing his message and the breadth of his work, the overall design itself is the mark of respect for the moving words from 1963.

After our visit to the MLK memorial, we then continued walking to visit the WW II memorial. The World War II Memorial honors the 16 million who served in the armed forces of the U.S., the more than 400,000 who died, and all who supported the war effort from home. Symbolic of the defining event of the 20th Century, the memorial is a monument to the spirit, sacrifice, and commitment of the American people. The Second World War is the only 20th Century event commemorated on the National Mall’s central axis. This is one of my favorite memorials on the Mall. It is very symbolic of the battle that occurred in both the Atlantic and the Pacific, and the use of water simply attracts both young and old.

I suggested to Peter that we visit a particular location by the Tidal Basin. The location is actually called Independance Island, but frankly I did not know that until today. I have visited this place multiple times with Mattie when he was well and when he had cancer. I wanted to go back there today because it is serene and it attracts all sorts of birds and ducks! This plaque lies on the ground right before the bridge over to the little inlet.

As we traversed the bridge, we came to an opening that acknowledged all the signers of the Declaration of  Independence. Peter is sitting next to the five signers of the Declaration who were from Massachusetts! I thought that was fitting for a Bostonian.

Here is the part of the Island that Mattie LOVED. All the ducks! I remember the last time Peter and I took Mattie to this part of the Tidal Basin, he was quite sick and in a wheelchair. I was exhausted and forgot to bring bread and crackers with me. Another family observed Mattie's disappointment and they came over to Mattie and gave us loaves of bread to feed the ducks. I will never forget that act of kindness! Because it brought a smile to Mattie's face to see the ducks all around him looking to him for food!

While watching the ducks, I sat on a wall which happened to have a large sunflower right next to it. I am a big sunflower fan, and I remember so many members of Team Mattie giving me sunflowers to cheer me up in between our hospital stays. Sunflowers are a happy plant who like me, thrive in the sun.

I would like to end tonight's posting with a message from my friend and colleague, Denise. Denise's daughter is Marisa, and Marisa helped me in the spring and summer of 2009 with caring for Mattie when he was home between hospital stays. In addition, for all my walk attendees, Marisa is the young lady who heads up our bake sale (three years in a row!). Denise wrote, I haven't emailed in a while and wanted you to know that you, Peter and Mattie are never far from our thoughts and our hearts. We went to visit Marisa in Italy in October and we were sitting on the balcony at our hotel. We looked up into the night sky and saw a beautiful full moon and we looked at each other and said, "Mattie Moon." Another time Dave was reading the paper and there was an article about a Lego Park and it included a picture of a huge Lego sculpture. He passed me the article to read and said one word, "Mattie."  When we were in Rome, I knelt in front of the Pieta and said a prayer for all the mothers I know who have lost a son....    In Paris, we saw some sculptures made of Legos; they were in strange shapes and we all looked at them and had the same thought at the same time. The work that you and Peter, with help from your supporters, have accomplished with the Foundation is "awesome". I am so excited for you and we already have Mattie Miracle dates on our calendar for 2012. Sometimes, I do not write or email because words seem inadequate. Please know that you are always in our hearts and in our thoughts and we look forward to supporting you in all the activities for the Foundation."