Saturday, January 14, 2012

Saturday, January 14, 2012

Tonight's picture was taken in January of 2009. Mattie had a clinic visit at the hospital and while there Jenny and Jessie (his art therapists) saved him a box. Mattie LOVED constructing all sorts of objects from boxes. You would be amazed the boxes that the hospital staff saved for Mattie, and then even more amazed by how he transformed them! As you can see Mattie took an ordinary box and made his version of a bicycle helmet out of it! He was wearing it at home and I snapped a picture of him. But if you knew Mattie, then you can tell from his facial expression that he wasn't really happy or feeling well. He was looking at me with a very glassy smile, and yet despite how he was feeling on even the worst days, he always tried to connect with me in some way.

Quote of the day: There is something in humility that strangely exalts the heart. ~ St. Augustine

This morning I attended a local gymnastics meet. Ann's youngest daughter, Abigail, was competing and Ann invited me to go with her. Typically Abigail's meets are out of town and therefore I can't attend them. In fact the last one I remember going to with Abigail was in January of 2010. A lot has changed in two years both developmentally for Abbie and emotionally for me.

I never studied gymnastics nor do I watch it on TV. So I do not understand how the sport is scored and judged, but that is okay. Actually it may be even better that I don't have this knowledge, because I was able to sit back today and watch things for there sheer grace and beauty. What I found intriguing was that my eye focused upon those gymnasts who presented themselves more like a dancer. Some looked like dancers and moved with the same grace and beauty. Clearly there are two very different philosophies to gymnastics, you either train and reward skill and power, or you really train the kids on the grace and poise of the sport. It would be lovely to see these things go together and I imagine they do as the children mature. Nonetheless, grace and style capture my mind and heart. It is a treat to watch a child defy gravity with beauty and to see her facial expression to match.

It was evident to me that the girls performing really had humility and for the most part supported their team mates, which was lovely to see. It is through this humility that I think the hearts of those in the audience are captured. Nonetheless, I would have to say that the children managed the stress of the day better than most of the adults in the room. The level of tension and anxiety in the room were high and I came home and I asked Peter, what on earth is all of this for? This is when my cancer world collides with the real world, and things or priorities do not make sense.

I spent the rest of the day at home in bed. I haven't been feeling well all week, and the pain has culminated this weekend. So I just have to rest. I truly believe all my physical ailments are very tied to grief and stress and most likely a direct result of the 14 months of intense stress fighting Mattie's cancer. This is a stress that lies dormant within my body and seems to pop up at interesting times. Any case, I am signing off for tonight in hopes that tomorrow is a better day.

Friday, January 13, 2012

Friday, January 13, 2012

Tonight's picture was taken in January of 2009 in a hotel in New York City. We took Mattie to New York to begin his experimental treatment of MTP at Sloan Kettering. I will never forget the hotel, The Affinia Gardens, we stayed at! When we checked into the hotel, they took one look at Mattie and us in the lobby, and immediately upgraded us to a suite with a kitchen, two bedrooms, and two balconies. Some how we really needed that touch of kindness. Thankfully we had Karen and our former neighbors from Washington, DC in the city, and it made the fear of having to be in a hotel and starting a new therapy less isolating. However, on the day of our arrival into the hotel, we were handed a package that came in the mail for us. The package was from Linda, Mattie's Childlife Specialist. I distinctly remember the card within the package, because she wanted us to know that our Georgetown Hospital family were thinking of us while we were away. I found that SO touching. Mattie loved all the great items Linda sent him. Linda knew exactly the kinds of things that interested Mattie, and the LEGOs and puzzles were a hit.

Quote of the day: We're never so vulnerable than when we trust someone -- but paradoxically, if we can not trust, neither can we find love or joy. ~ Walter Anderson

I have been reflecting on our dinner out with Jerry and Nancy this week. As I mentioned in Wednesday's blog, Jerry and Nancy were music volunteers at the hospital, who we instantly related to and appreciated because of their kindness, healthy diversion from our cancer battle, and their positive impact on Mattie. While at dinner we began talking about what our experiences were like living at Georgetown Hospital. After all, Jerry and Nancy met in the hospital while Nancy's son and Jerry's niece were in the PICU. So we all know quite well from a personal standpoint what it feels like to live in a PICU.

I sometimes make the assumption that we all have the same experiences, especially when living under the same conditions. But of course that is NOT true. I feel as if Peter and I have lived out Anderson's quote, because as soon as Mattie was hospitalized in August of 2008, we were very vulnerable. We did not have our friends and family around us and EVERYTHING and EVERYONE seemed foreign to us. Actually I would even beg to say that living in a hospital environment is like moving to another country, because there are customs, traditions, values, and a whole order to how the place operates. It is safe to say that we were hospital outsiders in August of 2008. However, Peter and I had a similar philosophy.... if nurses were going to come into our room and work with Mattie, then we were going to get to know them personally. Actually I am not sure if this is my philosophy in life because of my profession or because this is who I am at the core. Getting connected to people is important to me, and it was never more important than in the PICU. We got to know who our nurses were dating, we learned about their husbands, their children, their homes, their pets, their hobbies, their vacations, and so much more. Things you would most likely share with your family and friends. So while we were adjusting to their system and culture, they were also adjusting and getting accustomed to ours! I made the assumption that ALL pediatric families related to their nurses the same way we did. But as I was talking to Jerry and Nancy, they just looked at me in amazement. They were looking because they never forged this type of connection with their nurses and they went on further to say that they really don't see this happening with other patients they observe and work with.

I am not sure how I feel about learning this news. About our uniqueness! But I guess a part of me isn't surprised. I always felt that Mattie's nurses bonded with us and they were no longer just our healthcare workers, but they became part of our medical family fighting osteosarcoma with us. Mattie's nurses looked out for us, they advocated for us, and it wasn't unusual for me to receive hugs, a back rub, and hot tea from them! All extraordinary and compassionate women. In addition, my hypothesis is that Mattie's experience with some of them was so challenging that several of them either left the unit or even the hospital to work somewhere else. Naturally no one will ever confirm that for me, but there seemed to be a mass exodus of people after Mattie died.

So as Anderson's quote implies, by being vulnerable, honest, and sharing our feelings, fears, tears, and laughter, we developed a great deal of trust in one another. Through this trust.... love, hope, and joy were achieved. Who knew such things were even possible in a PICU. However, as we admitted to Jerry and Nancy, when Mattie died on September 8, 2009, we lost a huge part of our life that day, but when we had to leave our medical family behind and head home, it made the loss seem almost impossible. We entered the hospital as three people, and left with only two! In addition, the people we turned to for 14 months during Mattie's cancer battle, were no longer part of our daily community. Cancer is all about loss, and the loss does not only occur at the time of diagnosis and perhaps death. It happens at every stage of the treatment and even recovery process.

Today was another whirlwind day with a six hour long license board meeting and ethics violation trial. So I am wiped out tonight. However, I would like to share one more commentary from the undergraduate reflection papers. I found this one quite insightful. 

"To be completely honest, over the course of my Georgetown career, there have been few classes that I have looked back and gone "that was highly impactful to who I am as a person." This class has been able to have this effect on me mainly because of our involvement in Mattie Miracle. It has been an unbelievable experience and one that I hope to stay involved with throughout the following years. Throughout my life, I have been fortunate enough to be able to experience working for my family's foundation that gives away money each year. This is an extremely rewarding experience but it is not the same as what we did with Mattie Miracle. This project has been hands on, and we have been able to see the actual contributions and suggestions we made come to fruition. The event throughout this process that really stuck out the most was helping push the snack cart throughout the pediatric units. This was an unbelievable experience and really opened up our eyes when we did it. The thing that stood out about it was the extremes. There were the really young kids, who were in a crib and had so many things hooked up to them, it was devastating. Then on the other extreme, were the older kids who looked like they were more towards our age. This was something that we could relate to. But what it really did was put everything in perspective. We go through our days complaining about little things like a homework assignment or paper, while in reality we have an amazing opportunity to go to this amazing school while we all have relatively good health. We worry about things that are so minuscule in comparison to what these kids are going through that when you see their lives it really gives you a deep appreciation for what you have in your own life. In addition, when we pushed the cart around, we got to see the faces of the parents as they were actually going through the process. Vicki and Peter have already gone through it, as they talked to us in class. That is not to take away from anything they have been through, but they are not in the process at the current moment like these people. Seeing their faces and the pain that was in these parents as they watched their children go through this extremely tough process was unbelievably hard to see." 

Thursday, January 12, 2012

Thursday, January 12, 2012


Tonight's picture was taken in January of 2009. Mattie was home between hospital treatments, and what you maybe able to see in the background of this picture was Mattie's hospital bed in our living room. Cancer transformed every aspect of our lives. Our home included. Every corner of it looked like a hospital with medical supplies, IV poles, commodes, a wheelchair, and as time evolved oxygen tanks and pain pumps. Memories that will always linger within me. I captured a tender moment between Peter and Mattie here and from Mattie's bright smile it was evident who was taking the picture. Mattie reserved a special smile and look for me. Though cancer ravaged his body, his smile and beautiful eyes remained unchanged.  


Quote of the day: The greatest test of courage on earth is to bear defeat without losing heart. ~ Robert G. Ingersoll

Ingersoll's quote couldn't be more on target. How does one handle defeat without losing heart? It is some times hard not to lose heart especially when I reflect on the large defeat of losing Mattie to osteosarcoma. Yet we try to take it one day at a time and attempt to find courage in order to continue the journey without Mattie.

I spent a great deal of the morning balancing several different Foundation items and projects. Though I do not like multitasking, I can do this quite well. I had years of practice while pursuing an education, working, and then balancing Mattie. Yet post-cancer, I sometimes have a shorter fuse, and juggling different things only brings upon further stress and physical symptoms.

In the midst of this busy day, I had the wonderful opportunity to meet my friend Margaret for lunch. As my faithful readers know, Margaret was Mattie's first preschool teacher. We met Margaret in 2005, and now seven years later, we are still friends. In fact, I loved Margaret as a teacher and a person from the first day I met her. I sensed she would be the right teacher for Mattie and my mom instincts were correct. Mattie grew and developed exponentially in her classroom and at the same time she provided me with great support, insights, and feedback. Over time our friendship grew and we only became closer. When we are together time simply slips by. We have the art of conversation, connecting, and sharing with one another and today was no different. Though Mattie is not physically with me, the friendships he made and left me with are profound. Margaret and I often reflect on Mattie's first year at Resurrection Children's Center. Because it was within that year, or should I say during the first day of school, that Mattie found what we call his soul mate. Mattie and his friend Zachary were soul friends. They understood each other, appreciated each other, and were fiercely loyal! They had an unusual friendship, one that made even adults pause, because it was intense and yet so natural.

After my lunch with Margaret, I went to Mattie's school to meet up with Donna. Donna has become my friend and is one of the kindergarten teachers at Mattie's school. Some of you may recall that I did a Matisse and Picasso lecture series in her class last year. Donna has invited me back to her class this year, and I will give my three part lecture series in April to her students. However, what is very evident from seeing Margaret and Donna today is I fit in very well with teachers. We talk the same talk and we just get the challenges of teaching. As Donna and I walked our way to her classroom, along the way, we chatted with Bob (the head of Mattie's lower school, and also known to my faithful readers as the Magic Man), Leslie (Mattie's kindergarten teacher), several other teachers, and even a parent and her middle school child. Donna and I connected for several hours and we were not talking about the lecture series. We were simply talking about life, the Foundation, and Mattie. One of the topics we discussed was the art of storytelling. This is a form of education that I absolutely LOVE and I believe it can be incorporated into the classroom at all the developmental stages. I always used it at the college and graduate school levels, but I also know young children and children of all ages gravitate to it. I was expressing my concern to the teachers today about this new generation. We are so immersed into technology and SO focused upon grades that we are not teaching our children the core and fundamental values of life. Which are the life skills of listening, the art of conversation, and being able to emote and verbally express emotion! Sounds simple, but you would be surprised how challenging it is to have eye contact and conversation with children in today's day and age. We have become technology driven, which can be a beautiful tool, but also a curse. Storytelling captures one's attention and imagination. After all as you are process what you are hearing (which is also an important life skill), you are developing a picture that coincides with what you are hearing. In addition storytelling passes on cultural views and traditions and it also teaches children about non-verbal mannerisms and expressions. But at the heart of the matter, storytelling evokes feelings. Feelings that can be discussed and it is through these deeper conversations much more can be learned on ANY subject matter. Needless to say, we had another stimulating afternoon of conversation!

I would like to share another commentary for one of the undergraduate reflection papers. "The work we performed for Mattie Miracle and more importantly the way we impacted the children's lives was so special to me. We got thank you emails from parents telling us that their kids cannot stop talking about how much fun they had at one of our practices or at the Georgetown Basketball game. This made all of the work worth it because not only did we get to see the smiles we were putting on the kids' faces but the parents were so appreciative of our actions as well. Interacting with the kids and going up to the pediatric ward in the Lombardi Cancer Center made me realize how lucky I am and how much I have. I realized that I need to do more to help out people who are less fortunate than me more often. I am blessed with so much and I need to start giving more. Overall I enjoyed working with Mattie Miracle. It taught me a lot about who I am and how much a difference just a few college kids can actually make."

I would like to end tonight's posting with a snippet of a song I heard on the radio today. It is brand new, so the full song isn't on the Internet yet. Nonetheless, when I heard this song, it made me stop and want to hear ALL of it. I hope you listen to it, because it should give all of us PAUSE and re-evaluate our priorities. For me, cancer did that for me, I am happy I did not miss Mattie's seven years of his life, because I would never have had the chance to make up for that lost time. I introduce you to Phil Vassar's song entitled, Don't Miss Your Life!

http://www.wmad.com/pages/conway.html?article=9602489

Wednesday, January 11, 2012

Wednesday, January 11, 2012

Tonight's picture was taken in January of 2009. We took Mattie to New York City for the second time, to begin an experimental treatment at Sloan Kettering. The treatment was started at Sloan and then through a compassionate release program, the remaining dosages were given through Georgetown Hospital. Before Mattie began treatment, we took him to some of the wonderful sights of NYC. Though it was cold out, Mattie enjoyed the boat ride and passing by the Statue of Liberty. Caring for a child with a major disability provides great challenges, however, trying to do this in NYC was double challenging for me. Getting Mattie in and out of taxis was a feat and just moving at the quick and lively pace of NYC made life with cancer much harder. However, Peter and I worked hard at sheltering Mattie from these stressors and we particularly were aggressive about protecting his feelings especially when people looked at him like either he was a physical misfit or worse with great pity.

Quote of the day: As human beings, our greatness lies not so much in being able to remake the world as in being able to remake ourselves. ~ Mahatma Gandhi

Gandhi's quote is quite profound. I think it takes great effort to remake one's self. First that alone requires one to develop introspection into one's life and how one is being with the world, but second it then requires energy, will power, courage, and commitment to achieve this make over. Self change is hard just in general. If you doubt this just ask anyone who is addicted to a substance or activity, or ask someone who is trying to lose weight, or even ask a mom or dad who is having trouble parenting a child. Yet through self change or by remaking ourselves, it is miraculous to see how others (or the world) around us also change.

I know for me, having to remake myself after Mattie's death has been challenging, stressful, and at times disheartening. Mainly I guess because I did not ask for this change. I spent a great deal of time getting my education and working in the mental health field, and yet how I saw using these experiences and credentials no longer interest me. I have been forced to re-evaluate myself professionally as well as personally, and I believe Mattie's death has sometimes made me pause and ask why bother?

It was another grey and rainy day in Washington, DC. I met up for lunch with my friend Tina and we had a very stimulating conversation about fundraising ideas for Mattie Miracle. Over the course of the last month or so, she has been generating a list of ideas for me to consider. I appreciate this brainstorming because unfortunately right now the Foundation does not have a staff. Peter and I are the staff and at times it becomes a juggling act to try to create and generate ideas, while at the same time running programs and maintaining the administrative side of running the Foundation. I am always open to new ideas and certainly new connections and possibilities. It is through new connections  that the 5% Whole Foods day came to our attention. In the midst of talking ,Tina and I had the good fortune of being treated to homemade chicken soup at a local restaurant. It was the perfect meal for a damp and cold day. In a way, like other people talk about their children or work, my equivalent is talking about the Foundation. The Foundation is my job, but it is also requires nurturing. I appreciate Tina being able to see that.

Tonight, Peter and I had dinner with Jerry and Nancy. Our favorite music volunteers from the Hospital. We met them during our first week at Georgetown Hospital. Mattie's first week of chemotherapy was scary and stressful for all of us, yet when Jerry and Nancy came into our room one evening and started playing their keyboard and singing, we all forgot our problems! Mattie loved the music and as time passed, Jerry and Nancy created a Name that Tune game for Mattie which he loved. The cute part was that Jerry wanted Mattie to feel good about his singing and his participation, so Jerry would email me ahead of time to consult on the songs he would select for the game. He wanted to make sure whatever he played that Mattie actually knew the song and would be able to win Name that tune! So in essence we met this talented twosome in 2008, and we have been friends who periodically get together every other month or so for dinner. Another special connection in our lives thanks to Mattie. Several of my readers have asked me about Jerry and Nancy and I do want you to know that Jerry and Nancy are just friends, they are not married. They met and supported each other at the hospital when Nancy's son and Jerry's niece were undergoing cancer treatment. Cancer united them and once their family members went into remission, they wanted to give back to the hospital and therefore have been musical volunteers for several years. A rather touching story!

I would like to end tonight's posting with a passage from one of the undergraduate student reflection papers, "The Mattie Miracle Cancer Foundation project was the first time in my Georgetown career where I actually applied myself in a very positive way. At the start of the project, I was very excited and nervous at the same time. I didn't know how everything was going to turn out. When Vicki and Peter came to speak with us, I was very nervous when thinking of the semester long project. As they showed us the presentation the day they came to speak, things got very emotional and the entire room was just in complete silence. Actually going to the Lombardi Cancer Center and seeing the kids there made me grateful for the life I have. I didn't realize how good I had it. After complaining about this and that, it was a real humbling experience to go over to the hospital and see everything that was going on. This realization allowed me to really put my all into this project. Doing something for a greater cause really brings people together. Before this, I had never experienced anything like this at Georgetown before. I am grateful for this wonderful opportunity."

Tuesday, January 10, 2012

Tuesday, January 10, 2012 -- Mattie died 122 weeks ago today.

Tonight's picture was taken in April of 2009. Mattie was in the Lombardi Clinic, and if you knew Mattie, then you know that when he was in clinic he was going to find Jenny and Jessie, his art therapists. Jenny and Jessie are very talented professionals who unfortunately no longer work at Georgetown. For us, they made the clinic special and they knew how to engage Mattie both artistically, mentally, and socially. A rare gift! This cutie sitting next to Mattie is Maya. Mattie and Maya are the same age and Maya was the ONLY friend Mattie's age that he made at the hospital. I can recall the day they met in fact. Mattie, Maya, and a few other kids were sitting around the art table creating independently. Maya started talking about how she hated to get pricked with a needle. She expressed herself very well and shared her feelings. To my surprise, Mattie out of no where piped up and told her that he could relate to her and her feelings. That was it, that conversation cemented their friendship. Maya is very bright, humorous, creative, and a live wire. She was an excellent match for Mattie. In front of them, you can see a painting of a rainbow they painted together. This painting still exists and it is a ceiling tile within the Lombardi Clinic. I am sure many people pass under this rainbow each day, but to me this rainbow is special. It signifies the time when Mattie was alive and it captures the boldness and beauty of a special friendship.  

Quote of the day: A bit of fragrance always clings to the hand that gives you roses. ~ Chinese Proverb

My friend Charlie sent me this quote today, and I simply love it. I love it because the visualization it conjures up is beautiful. In essence when we give someone a gift, not just roses, a part of that gift remains on our hands. Our hands are responsible for sharing and spreading happiness and these emotions do stay with us. They get absorbed in our skin, not unlike lotion. I know I feel this way when I give someone I care about a gift, but this Chinese proverb captures that feeling in a very meaningful and visually pleasing manner.

Today was my first day back to zumba since I returned home from our trip. It is always hard to get motivated to start exercising again, but as always the class doesn't disappoint me. By the time the hour was up, I felt better physically and mentally.

As today is a Tuesday which marks the 122 week of Mattie's death, heading back to Georgetown Hospital was not an easy endeavor. But I attended the parent advisory board meeting tonight. Mind you I was just on campus yesterday too! To some extent I have to compartmentalize my emotions when I enter the hospital, otherwise I couldn't muster the energy to make it to the pediatric unit. The meetings are held in the childlife playroom, a playroom that was VERY significant to Mattie. To many of the parents sitting in the meeting, they never sat in this playroom. When their children were being treated at the hospital the playroom hadn't been built yet. But for me each corner of the playroom holds memories.

One of the items we discussed tonight was the annual medical grand rounds in which parents present to doctors and nurses about family centered care and their experiences at the hospital. Some of my faithful readers may recall that I testified at the medical grand rounds in May of 2011. I have been asked to speak again this year on April 20. However, I couldn't hold my tongue and asked what we were planning on doing to get physicians to actually attend this event. The chief of the PICU sits on our advisory board and I said it was "appalling" that parents should prepare and come to this event and then doctors do not show up. Certainly I am smart enough to know that one can't demand an attending physician to show up anywhere, but certainly medical school students can be mandated to do anything. To me medical students need to hear from parents directly and in many ways we are their paying customers and our feedback should be important to them. It was discussed that nurses were in attendance in 2011 and that nurses would be invited again this year. With that, again, I stopped the conversation and said I am not surprised the nurses attend, however, they are not the ones who need to be exposed to psychosocial content and the nature of parents' concerns, it is doctors. Parents all around me at the meeting were nodding their heads in agreement, and it is hard to challenge what I am saying, especially if you lived within a hospital setting. I lived in a hospital for 14 months and I can count on one hand the medical doctors who truly understood, embraced, and practiced family centered care. So it is my hope that the medical profession will not only talk the talk, but walk the walk. The walk has to start in MED SCHOOL! Whether physicians want to accept it or not, patients are taking a much more active role in their health care and the care of their family, and therefore instead of this being viewed as a hindrance or obstacle, it should be viewed as an added benefit.

After the meeting, I had the wonderful opportunity to talk to one of the hospital administrators who has become a friend. He let me know on stressful and challenging days, he stops and reads Mattie's blog. That the blog gives him perspective. I was deeply touched by his feelings and thoughts. On the drive home I looked up into the sky and there was a glowing and very full Mattie Moon guiding me home.

As promised, I would like to end tonight's posting with two of the commentaries I have received from the Fall undergraduate business class. As I continue to read these reflection papers, I realize introducing these students to childhood cancer was a profound experience for them.

From a female undergraduate, "There were many factors at play to consider when evaluating how the project has affected me as a student of creativity, as a group member, and as a human being. This project has been unlike any I have done in the business school or at Georgetown in general. It is a question of being human at our very core, suffering and accompanying each other as best we can. Vicki and Peter are incredible people and I think that there is no other foundation that we could have worked for that would have provided such an experience of mutual gratitude. I felt like they really opened their hearts towards us and as much as we helped their organization, they helped us back. Vicki was constantly available through email, and both of them actually took the time to come to our event at the hospital."

From a male undergraduate, "The project itself is very humbling. I'm known for being very vocal during everyday affairs with things that bother or annoy me. However, walking over to the hospital and seeing what the children go through is a very humbling experience. When you realize how sick some of them are and what they are going through, suddenly the problems in your life don't seem so bad. I won't pretend that it isn't human nature to find something to complain about during the day, but at least for those moments, you realize just how much easier your life is than any of the children's lives at the hospital." 

Monday, January 9, 2012

Monday, January 9, 2012

Tonight's picture was taken in February of 2009. Mattie was on his way to the Lombardi Clinic for treatment. Next to Mattie and I was Jenny, one of Mattie's incredible art therapists. What you may not be able to tell from this picture was Mattie was in a hallway that ramped down to the Lombardi Center atrium. When Mattie was feeling in the mood, he loved going down this ramp, as if he were on a roller coaster speeding down hill. Naturally Jenny nor I ever let his wheelchair completely go from our hands, but we definitely gave him the opportunity to feel like he was in a roller coaster seat speeding down the ramp. Notice a hospital employee in the background watching our antics. With Mattie, there were a lot of antics and those who knew him appreciated that side of him. In that respect Mattie made cancer easier for us because he had many interests, a good sense of humor, and knew how to captivate the attention of others.


Quote of the day: It is well to be prepared for life as it is, but it is better to be prepared to make life better than it is. ~ Sargent Shriver

I began my day with a beautiful text message from Toni, Brandon's mom. As my faithful readers know, Brandon was Mattie's big buddy. Mattie let VERY few people into his life while he was battling cancer. In fact, I can count on one hand the friends Mattie made at the hospital who were either ill or had cancer. The list was short, it was Brandon, Jocelyn, and Maya. Mattie related to Brandon, and I deeply believe he felt Brandon understood and appreciated him. Brandon and Mattie battled cancer together and in the process we came to love him and his family. Toni and I fortunately had each other for support and both of us express ourselves passionately, so we appreciated each other right away. Toni knew Peter and I were headed back to campus today and she understands how challenging returning to the scene of the crime is. Toni gets it because she survived days and nights within the hospital and saw the horror that cancer produces in your child and within yourself. To some extent I do not think others can possibly grasp the full extent of the trauma of returning to the hospital, if you haven't lived through the process yourself. Toni wished us well today and wanted me to know the impact Mattie has made on Brandon's life! Her text message brought an immediate smile to my day and in a way we felt less alone as we journeyed back to campus.

Peter's former business school professor Bob Bies (http://explore.georgetown.edu/people/biesr/?PageTemplateID=319) invited us back to Georgetown this semester to work with his MBA students. We are their community based learning project. Which means we are their business client and as such they need to learn and hear about the Foundation and then utilize their knowledge to help us develop strategies that will enable us to grow more productively and creatively.

Many of you many recall we worked with Bob's undergraduates in the Fall. What I love about Bob's teaching style is he operationalizes Shriver's quote. He challenges students "to make life better than it is." Throughout the Fall semester, Peter and I wondered whether we were making an impact on the young minds we interacted with in Bob's class. Today, Bob handed us copies of his undergraduate students' process papers. Each student in the class wrote a one to two page paper about their experience interacting with us and working for Mattie Miracle. I haven't read through them all, but what I am reading is amazing. If we had any doubt whether we impacted them or got our message across, these papers squelch any of these concerns. Over the course of this week, I will share with you some of the writings we received today. This is definitely one of the aspects of teaching I miss. I always learned deeply from my students.

As we were driving to the Georgetown campus today I had a bag of what I call "Mattie props" in the back seat of the car. These props are all meaningful toys or items of Mattie's that I bring because I feel it will help personalize the beauty of our son. We work very hard to make him real for the students and to let them understand that this Foundation is based on the memory of a once vibrant, healthy, dynamic, and creative little boy. All the props were secured nicely in the back seat, and yet while driving all of a sudden one of Mattie's toys started to make noise. Mattie's Thomas the Tank engine just seemed to miraculously turn itself on and its wheels were moving. Both Peter and I took that as a sign. A sign that I shared with the students at the end of class. I told them that Mattie was here with us today and approved of my selection to bring Thomas into the classroom and to share his life story with them. Before our presentation began, I took a picture of the props. On the desk was Sunshine (Mattie's yellow boa constrictor), Thomas the Tank engine, Scooby Doo, a Lego yellow grater (for road building), a picture of Mattie's Mr. Sun painting with a butterfly propped on top, and on the floor was an excavator, Mac from the movie Cars, Lightning McQueen, Wall-E, and naturally a rubber ROACH! 

I snapped a picture of Peter today presenting to the Imagination and Creativity class. There were 46 students in the class, an ironic number, since 46 children a day are diagnosed with cancer. A message we closed our lecture with, because we wanted them to know they were lucky that they were healthy and able to learn, because while this was happening, children are being told they have cancer. It is profound to think that if we congregated all the children diagnosed with cancer today, this would fill their 46 seats in this classroom!

Perhaps I was just more observant or the dynamics in today's class were different. But what the undergraduates said to us in words, I could see on the faces and non-verbals of the MBA students before us. Like the undergraduate students, the MBA students also asked good questions and were engaged, but I sensed that our story was overwhelming for them to hear. I shall see if I am right when I read their reflection papers at the end of the semester, but I told Peter at dinner that I read the faces and some were just overwhelmed. I actually do not feel badly about that, mainly because when students are overwhelmed great progress can be made. To some extent cancer and the death of a child should make them feel uneasy and if it did not then I would have thought we did not do our jobs today. Childhood cancer needs to evoke emotion, because it is through this emotion that passion for change and the conviction to think differently and innovatively are inspired.  

Just like last semester, we went through a PowerPoint slide presentation with the students and also showed them a "remember me" video of Mattie which is posted to this blog. The video instantly moved many of the students and some of them were crying and sniffling. In fact, it takes super human strength for Peter and I to be in the same room with this video and then be asked to speak as soon as the lights come back on. In our PowerPoint presentation there is a slide that addresses the psychosocial impact of cancer. However, before discussing the content of that slide, I had the students pause and reflect on how their lives would change if I told each and every one of them that they were diagnosed with osteosarcoma today. With the undergraduates I basically went through this visualization exercise with them and gave them the responses. Today I paused and asked the class to generate the responses for themselves. I got about four of five students who bravely stated their feelings and each one was very profound and right on target. For example, the first student to respond said to me if he were diagnosed he would be upset about how his life was going to change. That he wouldn't be able to come to class and better yet that getting an MBA may not even be a priority any more. Bravo! Indeed, they got it right away, because cancer demolishes plans and one's hope for the future. Instead, the only thing that matters during the battle are life and death decisions and factors.  

As we finished class today, several students came up to talk with us. However, we all immediately noticed it was snowing. Bob took that as another sign from Mattie, and he maybe right. This was what things looked like as we were driving home!

I would like to end tonight's posting with two paragraphs from an undergraduate reflection paper. It is my hope that as I continue to share these comments, you will see the effect we had on these students. This male student wrote, "In high school, I volunteered at Ronald McDonald House charities. There, I frequently met families of pediatric cancer patients. Going into this consultant project with the Mattie Miracle Cancer Foundation, I expected Vicki and Peter's story to be similar to the ones I had heard in the past. I could not have been more wrong. I was completely blown away by their emotion as well as their can-do attitude. It must have been extremely tough for them to start a Foundation that remembers Mattie's life and also looks to raise money for the cause for Mattie's death. A big reason why I was so excited and passionate about working with my team on this project was because I felt an emotional connection. Knowing that my work was benefiting the lives of others in a very tangible way not only made me want to help out more, but also encouraged me to tell my friends and family about the Mattie Miracle cause."

Sunday, January 8, 2012

Sunday, January 8, 2012

Tonight's picture was taken at Mattie's March in April of 2009. This was an event Team Mattie created to celebrate him and what we thought was going to be the end of his treatment regimen. Unfortunately for Mattie when his chemotherapy ended in May, he then had to have a sternotomy in June (to remove tumors in his lungs) and then we learned of his terminal status in August of 2009. However, I wanted to post this picture tonight because it captured my attention yesterday. Yesterday I was going through a ton of pictures to find just the right documentation for our Foundation's brochure. If I could entitle this photo, I would call it "friends." While the program of events was occurring on the left hand side, Mattie on the right hand side of this photo was surrounded by his buddies. With him were Brandon (his big buddy) and Robbie (one of Mattie's favorite hospital volunteers). However, look closely, there was someone behind Robbie! That little person happened to be Zachary, Mattie's very close friend and preschool buddy. Zachary stayed close to Mattie that entire day, but then again, what are best friends for? Zachary made this choice to be with Mattie, which meant that he was separated from his family during the ceremony and also that hundreds of people were watching him from the stands during that time. To me that was a remarkable choice for a seven year old to make!


Quote of the day: The more we develop the habit of noticing goodness, the more our own sense of well being rises. ~ Brahma Kumaris


Peter and I had another working day! However, mid-day, I did take a break and we went for a walk on Roosevelt Island. While we were parking our car by the Island, we observed a mother with three children. One child had fallen down and was crying hysterically and her other two she wasn't paying any attention to which was a problem since they were dangerously close to the parking lot. We made note of this woman and her children because we literally stopped traffic to avoid cars from coming close to her wandering children. She did not acknowledge us or thank us, which was fine. Keep this in mind as my story continues!

Peter bought another box of crackers for me to feed the ducks and he keeps the box in his car trunk for our walks. Before entering onto Roosevelt Island, I had Peter give me a sleeve of crackers to take along with me on our journey. Part of me does this in memory of Mattie, because this is something he loved doing on the island.

However what wasn't fine was what took place later on our journey with this mother from the parking lot. During one portion of our walk on the Island there is a bridge and ducks like to congregate there. So I opened up my sleeve of crackers and began to feed the ducks. It was at that point, we spotted this mother and her three children again. The children came running over to watch the ducks being fed and when the mother tapped me on the shoulder, I thought she was going to ask me for some crackers so her boys could feed the ducks. However, to my dismay she decided to tap me on the shoulder to give me a lecture. Her lecture was about the harm I am doing to the ducks and that I shouldn't be feeding them. I gave her a look and I told her that her lecture wasn't going to stop me from feeding the ducks. With that she grabbed her children and shuffled them along, as if I were dangerous and committing a crime. She is lucky I held my tongue because if I told her the significance of why I feed the ducks then perhaps this would have taken her off her soap box. Needless to say she ruined the whole walk for me and the enjoyment I always had from feeding the ducks. She is lucky she was with three children today, because she had me so mad, I literally wanted to throw her right into the Potomac with the ducks.  

I did come home and googled information about duck feeding and learned why bread and crackers aren't good for ducks. If you want to read this information, I posted the link below. However, I grew up feeding ducks and I never remember hearing about the dangers of carbohydrates for ducks! So even armed with this information, I have mixed feelings.
http://birding.about.com/od/birdfeeders/a/feedingducksbread.htm

Peter and I finished the Foundation's brochure today which was hard to do. Not only content wise, but laying it out and formatting it on the computer was a royal challenge. In addition, we prepped for tomorrow's lecture. The Foundation has been selected to be a community based learning project for a MBA course at Georgetown University. Last semester's business class was very fruitful and successful and I am thrilled that Peter's professor invited us back this semester. So stay tuned for highlights from tomorrow's experience.

I would like to end tonight's posting with an article I read in the Washington Post yesterday. This article pressed a lot of hot buttons for all of us at dinner last night. The article is entitled, In sickness and in health. A common phrase one hears at weddings! However, what happens when your spouse has a massive stroke at a young age and the stroke leaves him cognitively impaired? So impaired that he functions more like a child than an adult. How do you continue on? Is this person always your husband even when he becomes so ill that he can't care for himself or his family? The article details the lives of a family devastated by a stroke, however, the wife of the stroke survivor eventually divorces her husband and marries someone else. Yet the difference is her first husband is instrumental in her life and her second husband committed in his wedding vows to helping his wife with the care of her first husband. The reason why this article pushes a lot of buttons for people is most likely because we personalize the situation to our own lives. If we had a stroke, would our spouse want to marry someone else? What would become of us? These are scary questions, but real life problems, problems that I do not think we should jump in and judge too quickly. I guess I feel that way because the role of a caregiver of anyone with an impairment or illness is tiring financially, emotionally, and physically. Caregivers need support and without this support, the caregiver dwindles and this directly impacts the caregivee. Do I condone the fact that this wife divorced her husband and married another man, I DON'T know! But I do know that she lovingly includes her first husband in her life and I have a feeling if it weren't for her, he wouldn't have made so much progress in his recovery and outlook on life. I invite you to read this story for yourself and come to your own conclusions.

In sickness and in health

http://www.washingtonpost.com/lifestyle/magazine/a-family-learns-the-true-meaning-of-the-vow-in-sickness-and-in-health/2011/11/04/gIQAahyAdP_story.html