Saturday, February 4, 2012

Saturday, February 4, 2012

Tonight's picture was taken in February of 2009 right outside Mattie's hospital room door. As my faithful readers know, hospital admissions and discharges were a nightmare for us. Mainly because we had a ton of items to transport with us. After all we had to live in the hospital for days and weeks on end. So that meant we needed clothes, laundry detergent, plates and utensils, Mattie's favorite toys, videos, and snack foods just to name a few. With each hospital admission we also accumulated more things as well, since Mattie would get gifts from friends and supporters, and from childlife in the hospital. Which is why, after Mattie's death our home looked like a warehouse. With each discharge I would bring all our bins and items home and naturally things were piling up all around us because I was unable to get to cleaning out and organizing things. I had no time, because when I was home I was a full time nurse, doctor, mom, and play companion. After Mattie's death, one of the worst things we had to contend with was cleaning out our home. I did not deal with this for over a year. In fact, it was last February, that I began going through piles and donating items. I am showing you this picture tonight because yesterday's visit to the hospital triggered a memory. The memory was the importance to me of decorating Mattie's room. With each admission, out came my boxes of decorations. I had things hanging from the ceiling, posted on the walls, the door, and anything that I deemed needed cheering up. Which was literally the entire space. As you can see, Mattie was posing in front of his artwork, that I taped to his door. I felt that those who entered the room needed to see these things as much as I needed to post them. I wanted them to immediately see that this was our home, and just like one's home you put your own personal touches on it. In addition, the art and decorations just humanized the space. It wasn't easy bringing in the decorations, decorating the room, or disassembling the room with each discharge. But I did it!

Quote of the day: Do not let what you cannot do interfere with what you can do.  ~ John Woode

I simply love this quote! We all have our own limitations, yet the key is to focus upon what we can and do bring to our job, family, and life. Peter and I began our day with a conference call with one of the student groups from Georgetown University who is working with us this semester. It was interesting to hear this group's ideas about our website and strategies they would like to research to enhance our web presence.

Despite the greyness and rain, Peter and I took a walk in the city and went out to lunch. One of my friends gave me a gift card to a restaurant in Georgetown pretty soon after Mattie died. I had never used it, and today it seemed to motivate me to get out of our of home and try something different.

One of the highlights of my day was listening to a voice message that Heidi's daughter, Isabel, left for me. Isabel is part of the Girl Scout Troop I have been working with, and Isabel was inspired by Lauren's Bows for Hope and would like to create her own art pieces that can be sold at our Foundation Walk in May. Pieces that can be sold to generate funds for the Foundation! I really welcome this kind of creativity and commitment, because what I have determined is that the vendors which bring in income at our Walk are those run by teens. Children and adults who attend the Walk are more eager to support homemade crafts than manufactured products they can get else where. That was an important lesson I learned over the last two years. So I am thrilled that Isabel heard my desire to get kids her age more involved with the Foundation and generated a wonderful idea to accomplish this!

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "The blog stimulated me to remember that people respond to kindness more than disappointment. It took great courage for you to step into Cory's room yesterday. Somehow I believe that Mattie wanted you to do this so that you would have a new experience with this room. I believe that he doesn't want you to remember it only as the room in which he died. He wants you to associate it with life as well. That's where Cory comes in. I loved his smile and I smiled at his red Mohawk. I wonder if he has had it red for a long time or just yesterday for Wear Red Day. You, like Mattie, wore a smile even though you were having such tender feelings about this room. I noticed your eyes and was reminded of your description of Mattie, who smiled when he was in pain. Brava to you for going through the process of obtaining 8 CEU's for professionals attending the Symposium. I know that takes a lot of preparation. It added another dimension to encourage professionals to take time from their days to participate in this worthwhile and important session. I am so proud of you for bringing another level of professionalism to the Foundation. I wish that I was able to experience you in your classroom and realize that I am with each description and venture that you undertake. When you write about your experiences, you give such detail and depth to the undertaking. It shows your devotion to what you believe in. Your attention to detail is inspiring!" 

Friday, February 3, 2012

Friday, February 3, 2012

Tonight's picture was taken in February of 2009 in the Childlife Playroom of the Hospital. Mattie spent many a day in this playroom when he was well. Sitting next to Mattie was Sally, the storybook lady. Sally is quite a gifted actress who has her own production company. Yet would volunteer her time in the hospital. We LOVED the days Sally came to the unit. We acted out all sorts of plays and things with her, and she took a liking to Mattie. She appreciated him and was able to bring him out of his shell on bad days. Each hospital visit, Sally came dressed as a particular part or theme, to help give flavor to the story she was sharing with us. However, Sally didn't just read a story, she made all of us ACT it out. I typically played the witch, something I perfected over the course of 14 months being locked up in a hospital. In this picture, Sally was celebrating African American history month, and she introduced Mattie to the power and symbol of the drum.

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

Today we lived out Buscaglia's quote. I joined forces with Girl Scout Troop 3989 at Georgetown University Hospital and we delivered 100 Build A Bears to the Childlife Department. As my faithful readers know, last Friday, I went to the mall and met this troop for the first time and got to participate in their bear assembly process. However, that was only part one of their service hours to Mattie Miracle. The second part happened today. To me the act of service learning actually means participating in HELPING those you plan on serving. So making the bears was indeed important, but it would only have purpose and meaning if the girls then visited the hospital and got to see the units and delivered some of the bears to the children. I believe it is through human interaction and feedback that our quest and passion for service learning gets nurtured and further inspired.

Our wonderful friend Tim, who is an Associate, Administrator at Georgetown University Hospital came by to visit with the girls today and congratulated them on their service and contribution to the Hospital. When I entered the hospital today, I had a ton of Mattie's stuff with me and felt like a wilted flower. Tim immediately grabbed the Mattie bag and carried it throughout the hospital for me. That kind gesture meant a lot to me, as did his presence today.

As with all my Foundation presentations, I brought Mattie items with me. To me it is important for others who interact with us to know that Mattie was a real boy, who led a profound life in seven short years. He is our constant motivation for what we do and guides us on our mission.

My friend and Mattie supporter, Tanja, journeyed with me today. Unlike others in this childlife playroom, Tanja understands the ramifications of that room (since she played with Mattie in it) and just the simple presence of being in the unit. Tanja took a picture of the troop leaders with us. From left to right are: Pam, Trevor, Vicki, Tim, Katie (childlife specialist), Heidi, and Ellen.

The Girl Scouts had a half day of school today, and when they arrived at the Hospital, Linda (Mattie's childlife specialist) allowed us to close down the playroom for several hours so the girls could have lunch, I could do a presentation, and then we could assemble the distribution of bears. I have done many Mattie and Foundation presentations but ONLY to young adults and adults. Today was my first experience presenting to teens. I walked a fine line between being honest and graphic and trying to temper the information so as to not scare the girls. In my adult presentations, I am much more candid about the horror of cancer and the devastating on a family. I do think with this age group things do get absorbed but thoughts and feelings aren't always easily shared. However, in time I believe the pictures they saw, the information shared, and video of Mattie will get absorbed and sink in.

I introduced the girls today to Lauren Chelenza, the founder of Bows for Hope. As my readers know, Lauren is a 13 year old Osteosarcoma cancer survivor, who battled cancer in Pennsylvania during the same time as Mattie. When Mattie died, I think Lauren felt compelled to do something with this loss and she used her creativity to basically create her own non-profit whose mission is to financially support Mattie Miracle. I am in love with Lauren as a person and feel she is an outstanding role model for young girls. The Girl Scouts were very interested in Lauren, in how she was doing, and they also wanted to know about her mobility and prosthetic. Through Lauren these girls learned about repiphysis technology. Lauren was kind enough to make every girl today a Bow for Hope (www.bowsforhope.com). The girls were thrilled and we took a group picture with each of them wearing Lauren's bows. The irony is I did not have to encourage them to wear the bows, they naturally gravitated to the colors and wanted to put them on. Brava Lauren!

I would like to share some pictures I took of the girls walking around the pediatric units today. I entitle this one, "en route" to the transplant unit!

Katie, a childlife specialist, escorted us around the floor today and got consents from five families for us to take pictures. Which I appreciated! This is the second event Katie has participated with us on, and we value her support and enthusiasm. Featured here is Mathias and his mom. When we got to Mathias' room he was lying in bed. Yet with help he popped up, got his shoes on, and greeted us at the door. Because most of the transplant children live under constant contact isolation, we couldn't enter Mathias' room, but he was happy and motivated to receive a bear!

The next family we visited was baby Nicole and her Mom. Naturally it isn't easy for a family to be caring for a sick child and isolated in a hospital room. So in many ways I felt that Nicole's mom was grateful to see adults and have live interaction today. I remember the days being isolated in a hospital room, and I am not so sure I would have been as gracious about a stranger taking my picture as many of these families were today. Nonetheless, the children and their siblings appreciated the bears. I rode down in the elevator today with a sibling who received a bear and she was beaming from ear to ear and felt very special! Mission accomplished.

We then journeyed to the PICU. The unit Mattie lived in for over a year. Though Cory is a teenager, he was very happy to chat with us, he invited us into his room and was smiling as he received a bear. With Cory is Elizabeth (one of the girl scouts) and me. The irony about this room is the last time I was in it, Mattie had died. It is hard to look at this room the same way. Though the sun was shining in through the window, to me it was like walking into a funeral home. However, I was the only one seeing that vision.

Our next stop was to see this cutie, Sophie. Sophie was actually one of the children who was at the Verizon Center event with us. She was beyond thrilled to be visited by the girls and to receive her own bear! As you can see she invited some of the girls all around her bed!

Our last cutie which we were allowed to photograph is Destiny. A very beautiful name to go with a very alert and curious little girl. Destiny loved the bear and was playing with it once we walked out of the room. It is our hope that these cuddly creatures bring a smile and some moment of happiness into the lives of these courageous children.

As I told Tanja today, I was so happy she came to our Georgetown event. We had a good time processing the day and it always helps to have a friend there who knew Mattie and is part of our mission to see the Foundation grow! To end my day with a smile, my friend Heidi, told me that she and I were in the local paper, the Alexandria Gazette. Since I don't live in Alexandria, but I wanted to see the paper, I googled it. Here is the picture in question from our time together at the Zumba Explosion fundraiser last Sunday. If you look closely you will see Heidi and I!

I would like to end tonight's posting with two messages I received today. The first one is from my friend Heidi. Heidi wrote, "Your presentation got me thinking about a lot of things I never realized...the lack of drug choices for children with cancer, the effects on families, the financial issues...I know it must be difficult for you to re-examine and create awareness every day. You are an inspiration! So glad that our paths have crossed. You are so good at connecting with all types of audiences. You have a gift."

The second message was from one of the girl scout troop leaders. Pam wrote, "On behalf of St. Mary's Girl Scout Troop #3989, I want to thank you from the bottom of our hearts for everything you did to make such a beautiful experience for our troop today. Your presentation was amazing, and from the heart. The love you have for your son is contagious, and grows in those you surround and educate, and I know will impact the lives of the ten girls you met today. Fridays are always tough for the girls. They are very tired, and have been under a lot of school and social pressure at school. I assure you they were listening. As we drove home in my car with four of the girls, they talked about each child they saw and gave a bear. You had an enormous impact on these girls. I also find it amazing how they are like sponges - taking it all in - and sometimes you don't realize how much until you hear them conversing amongst themselves.
Thank you for all the arrangements you made with the staff and administration of Georgetown Hospital. Thank you for all your hard work in the preparation of your power point presentation. Thank you for your excellent presentation. You were so engaging with the girls. Most importantly, thank you for the opportunity you and the Mattie Miracle Cancer Foundation have given our girls. On behalf of our troop, I thank you!"

Thursday, February 2, 2012

Thursday, February 2, 2012

Tonight's picture was taken in February of 2009. As you can see Mattie was in his PICU room, surrounded by all the items I brought with us on each visit. Mattie's room was always decorated with things, and this did not only help our morale, but it also gave medical personnel who entered Mattie's room an excuse to interact with him and ask him questions about his toys, art, and creations! Sitting on Mattie's bed is Katie. Katie was one of Mattie's amazing HEM/ONC nurses. Katie was used to Mattie's legs all over the place, and in many ways Mattie used his legs like arms. Katie had an infamous grey sweater. It wasn't featured in this picture but Mattie's left leg loved that sweater because the sweater had a belt. By the time Katie was finished with her exam of Mattie, he usually had untied her belt and  pulled it right off her sweater. In fact, one day, he kept the belt during the entire portion of her shift. He eventually gave her the belt back, but neither of us could look at Katie's sweater the same way after that day. That belt got the "Curious George" (the name given to Mattie's left leg) seal of approval!


Quote of the day: Thousands of candles can be lit from a single candle and the life of the candle will not be shortened. Happiness never decreases by being shared. ~ Buddha

In Mattie's case, he was an amazing candle, who did light the minds and hearts of thousands of people. But unlike Buddha's quote, Mattie's life and light were cut too short. Yet I try to see that Mattie's spirit and light remain in each one of us he touched, and with the friendships he made and nurtured for us. So perhaps if I think about the number of friends and people impacted by Mattie, I see that his candle wasn't shortened per se, but it has multiplied ten fold.

I had the good fortune of spending the day with my friend Junko. She and I are both not good at taking breaks or doing nice things for ourselves. So getting together gives us the perfect motivation to care for ourselves. Today's journey was to a spa for a massage and lunch. We spent six hours together in what we call our oasis in the city. Our time together always goes quickly and I joke with her often about how we need to pay money to remove ourselves from phones, computers, and the stresses of life. I imagine this is a familiar problem for SO many of us these days.

While talking about the Foundation today, we chatted about the use of interns to help us manage the administrative tasks of the Foundation. Ironically the MBA students recommended the same thing to me. But the catch is I am very protective of the Foundation, its image, and what documents, materials, and communications emanate from us. It was through this discussion that I realized my level of micromanagement is due to the simple fact that the Foundation is my baby. I take what we do personally and it is hard to give up control to others. I also feel that until we become a strongly established organization, our role in the direction and tasks of the Foundation are crucial.

I continue to plug away on the plans for the psychosocial symposium, and have various meetings next week to finalize things. However, I am happy to report as of today I have secured 8 continuing education contact hours for licensed professional counselors, social workers, and psychologists to attend the symposium. I feel very positive about this and have been overwhelmed by the responses I am getting so far from those who have seen our agenda for the day.

On Friday, I head to Georgetown University Hospital to present to Girl Scout Troop 3989 information about Mattie and the Mattie Miracle Cancer Foundation, and then help them distribute the 101 Build A Bears that they created for the children. This is my first time presenting information about Mattie and the Foundation to this age group, so stay tuned for an update and pictures tomorrow!

Wednesday, February 1, 2012

Wednesday, February 1, 2012

Tonight's picture was taken in February of 2009. It was close to Valentine's Day and one of Mattie's friends gave him this huge lollipop as a gift. The candy was bigger than Mattie's head. When Mattie's nurse, Erin, came into the room he couldn't wait to show her his latest gift! However, he wanted Erin to have a lollipop for the picture, so he handed her this smaller tootsie roll pop! So in reality this was a picture that was purposefully meant to display a comparison of gifts. Mattie felt special to have such a big piece of candy and truly was proud of it and that his friends had remembered him.

Quote of the day: Alone we can do so little; together we can do so much. ~ Helen Keller

I began my day by drinking 36 fluid ounces of water in under two hours. This may not sound like a lot of water, but for someone like myself, you might as well have asked me to drink the ocean. It felt like the equivalent. Because of how I have been feeling over the last month, my urologist, asked me to complete an intravenous urogram. This is a radiological procedure used to visualize abnormalities of the urinary system, including the kidneys, ureters, and bladder.

The test took place at Virginia Hospital Center (VHC), which was my hospital before Mattie developed cancer. In fact, Mattie was born at this hospital and also diagnosed with cancer at VHC. Going back to VHC holds various memories for me, good and the horrific. All my prenatal care was done at VHC as well, and to me this hospital helped to bring Mattie into this world and at the same time, through his diagnosis on July 23, 2008, they helped to take him away.

As I headed to the radiology department, I naturally couldn't shake from my head the afternoon of July 23. I remember taking Mattie to the hospital for what I thought was going to be a quick x-ray to determine if he fractured or broke a bone. I honestly in my right mind would never have guessed I would receive the news of Osteosarcoma. That word and the scene of how I received that news will be permanently etched into my mind.

Mattie taught me about every scanning procedure possible, so I knew exactly what to expect with a ct scan today, accept for the actual feeling of being injected with a contrasting dye. Mattie always hated that dye, but it wasn't until today did I have the foggiest understanding why. As soon as the dye goes into your vein, it feels like your body is on fire from head to toe. Fortunately my tech prepared me for this feeling and told me how long it would last. But from a six year old's perspective this had to be down right frightening for Mattie. The ironic part is after the test was over, the contrasting dye left me shivering and I had to sit down in the hospital and drink hot tea to gain composure. I am a very sensitive person and over 14 months at Georgetown, I learned to read the techs' expressions and actions very well. I could immediately sense when they saw something on a scan, and this usually meant that the scanning process was going to take longer so they could get additional data and views of Mattie. I am also used to receiving devastating news, so until I get the scan report and results, I will be on edge.

Later in the day, I met up with Ann, who took me to lunch and then we walked together in the fresh air. It was another beautiful day, in the 70s, and it felt like spring. I would be happy to eliminate winter altogether, because I find I just feel better when it is warm. At lunch today, we bumped into one of Mattie's first preschool teachers, Lana. It is funny, because the last time we were at this restaurant we saw Lana as well. Lana is an avid blog reader and Mattie supporter, and it is always nice to catch up with her and share stories. In a way, each person who knew Mattie is a part of his living history.

I spent the rest of the day working on the symposium and had a delightful conversation with the CEO of a cancer organization in Sacramento, CA. This professional is very interested in our symposium and is planning on attending. I am simply thrilled and value this kind of support.

Tuesday, January 31, 2012

Tuesday, January 31, 2012 -- Mattie died 125 weeks ago today.

Tonight's picture was taken in February of 2009. As you can see Mattie was shaking hands with Geoffrey, the Toys R Us mascot. Geoffrey came to celebrate Georgetown University Hospital's ribbon cutting ceremony for the childlife playroom. When Mattie entered the Hospital in August of 2008, the pediatric unit had NO playroom. However, within months, this space opened up and it gave us a new found freedom. A place to see and interact with other children and families, and most importantly a diversion from being stuck in a hospital room. Linda, Mattie's Childlife Specialist, understood that Mattie was the kind of kid who needed responsibility and a task. So she appointed him to participate in the ribbon cutting ceremony, and actually was one of the kids who cut the ribbon that was attached to the entrance into the room! It was a very exciting day for Mattie that involved pictures and CAKE! Though I am not sure who was happier about the cake, me or Mattie! Though this may not be public knowledge, there were some VERY bad days at the hospital, in which I would literally eat frosting right out of a canister. I am not sure who knows this other than Linda and Peter, and now of course all of you.


Quote of the day: Moral imagination is the capacity to empathize with others, i.e., not just to feel for oneself, but to feel with and for others. ~ Thomas McCollough

Empathy is one of those buzz words that gets over utilized in our society. If you had a bad day at work, at home, are sick, something happened to your child, you suffered a loss, a death, and the list goes on, chances are someone is going to tell you they "EMPATHIZE" with what you are dealing with. But is that really TRUE??!!

I remember in grad school, one of my professors pounded into us the difference between sympathy and empathy. To some these words are used interchangeably and are perceived as expressing the same thing. But in reality sympathy and empathy are vastly different and we can thank the American Psychologist, Carl Rogers for this beautiful distinction. From the moment I first learned about Rogers, I loved his theory and philosophy. Rogers felt that to truly experience empathy for someone else, you need to feel "as if" you were that other person. It is not how you perceive the situation, but instead the art is to be able to enter into someone else's world and viewpoint and experience the pain and emotions from that person's lens. This is not as easy as it sounds to do and frankly it can take a huge emotional toll on a listener to be able to empathize all the time. Nonetheless, when Charlie sent me this quote today, my gut reaction was I hope that all my readers have someone in their life they can turn to who truly empathizes and understands them, and in return that we can share this gift with someone else. To be heard, understood, and appreciated are probably life's greatest gifts.

I began my day by visiting Ann's mom, Mary. Mary was happy to see me but unfortunately was unable to verbalize her thoughts today. I miss the days that Mary could freely talk and we could converse about various topics. Nonetheless, I am happy that I met Mary a few years ago, because it gives us some history together that enables me to understand sometimes what she is trying to say or feel.

Today in a way was a miraculous day. I woke up without a headache. That may not sound earth shattering to all of you, but for me this was a gift. I have suffered with intense headaches now for two weeks straight. So much so that it was hard to keep my head up and eyes open. But today was spectacular, and to add to this, it was a beautiful spring like weather day which inspired me to walk for several miles.

This evening, Peter and I went to Georgetown University to meet with one of the business school class groups. This group has adopted Mattie Miracle as their community based learning project in two classes. I learned tonight that I am a "social entrepreneur," which is someone who recognizes a social problem and uses entrepreneurial principles to organize, create and manage a venture to achieve social change (a social venture). I simply loved the title, and Peter and I had a productive session brainstorming several ideas with this group that ranged from analyzing our mission to developing an innovative psychosocial service that could be transferable to other hospitals. I find it very meaningful interacting with students and am inspired by how our story impacts them personally. 

Monday, January 30, 2012

Monday, January 20, 2012

Tonight's picture was taken in February of 2009. This photo I realize may need explanation because at first glance you are most likely confused by what you are seeing. Dressed in a yellow gown, blue mask, and pink basin on her head was Linda, Mattie's Childlife Specialist. Looking at Linda were Mattie and Anna (Mattie's physical therapist). What was happening was a show down with water guns. Linda was dressed up in this get-up to inspire Mattie to shoot her with water. She was very successful. Certainly Anna could have just assigned Mattie exercises to do with his arms to try to strengthen them after his limb salvaging surgeries. But both she and Linda knew this would never have worked for Mattie. Mattie needed to be stimulated and engaged, and through these interactions he landed up exercising and getting rehabilitated. Physical therapy was painful and hard for Mattie, most likely not only because he had surgeries and was undergoing chemotherapy, but because unbeknownst to us, his cancer was aggressively spreading all over his body. When I think back on what we asked Mattie to do, he amazes me. Since most of us wouldn't have even gotten out of bed if we felt the way he did.  

Quote of the day: The door of opportunity won't open unless you do some pushing. ~ Anonymous


Christine (my friend) has been trying to introduce me to her friend for months. Today, thanks to some "pushing" as the quote implies, I had the opportunity to have breakfast with Christine and meet her friend. Her friend is a parent at Mattie's school, who read my blog while Mattie was battling cancer. We had never met before today since her son is a year younger than Mattie. However, like me this woman has an only child, who is a son. In addition, she is a mental health professional as well, and these two commonalities just really caught my attention. Christine's son, Campbell, and Mattie were very close friends in kindergarten and in some respects I am happy to hear that Campbell was able to make another special connection with this lady's son.

We talked about all sorts of things at breakfast and I had the opportunity to reflect on what life was like living in the hospital for 14 months. Rarely do people reflect on this aspect of my life anymore, nor do they talk to me about it and ask me questions. I am not sure why? Perhaps those days are viewed to be in the past, or maybe because they were so horrible then, that people do not want to resurrect the pain. Nonetheless, talking about that time in the hospital is real. It is a part of who I am, and when I see the reactions on the faces I am telling my stories to, I then realize and understand that.... yes this indeed was a nightmare and it gives me insights to why I feel the way I do on certain days. I had the opportunity to retell some of my experiences with doctors, radiology techs, and pre-surgery meetings. For me no matter how much time lapses, I can recall the stories and the scenes like they happened yesterday.

I was telling these ladies today about one of the techs at Georgetown University Hospital. This particular tech I found out disliked Mattie. She found him to be spoiled and difficult, and really disliked coming to his room to give him mobile x-rays (at 2am no less!). She felt he was spoiled because he got a lot of attention from other hospital personnel and she felt it was not merited. As Mattie's status turned terminal, this same tech happened to see Mattie toward the end stages of his life, and she was mortified by what she saw. By that point Mattie was ravaged by cancer and was having trouble breathing. Mattie died a horrific death, death by suffocation in a way. Make a long story short, after seeing what Mattie endured, she reflected on his time at the hospital, and felt deep remorse. I was told that she felt horrible guilt for being so judgmental. Though I was saddened to hear all of this, it is my hope that she gained some perspective from Mattie, and will never be harboring these feelings toward another sick child again. 

Christine's friend and I talked about the benefits of therapy and therapy for dealing with grief in particular. I suppose one of the downfalls about being a mental health professional, is I am quite aware of what therapy can and can't do. I know in my particular case NOTHING and NO ONE can possibly repair the reason for my loss, therefore I believe I have to process this and handle this in my own way and time. As Christine's friend said to me today... "you know too much." She had my laughing, but in a way she is right, knowledge in a particular field can sometimes provide greater challenges than benefits.

I spent the rest of the day immersed in Foundation items, jumping from Walk related items to Symposium related items, and then to conference calls. I had the pleasure of talking to my friend and colleague, Denise, today about the symposium. She brainstormed some symposium ideas with me, and I appreciated hearing her insights and strategies for marketing the symposium to the community. It is my hope within the next week or so to finalize aspects of the symposium so we can begin advertising it and getting the word out.

Sunday, January 29, 2012

Sunday, January 29, 2012

Tonight's picture was taken in February of 2009 in the Lombardi Clinic. As you can see Mattie was sitting in his wheelchair and getting his left foot painted red. Why? Because Jenny and Jessie (his amazing art therapists) were creating a Pediatrics welcome sign on the fifth floor of the hospital, and they wanted to place hand prints of children treated at the hospital on this sign. Mattie listened to that request and was not interested at ALL. Until I said what about a foot print? Particularly a footprint of "Curious George." The name associated with Mattie's left leg. The ONLY appendage of Mattie's not ravaged by cancer. Mattie LOVED the idea and sat still for the painting process. I typically do not show two pictures a night, but I wanted you to see the finished product.



This sign can be found on the fifth floor of Georgetown University Hospital. It greets everyone to the pediatric units. Notice the red footprint on the upper right hand corner. This is Mattie's left foot. Though Mattie is no longer with us, I can't pass this sign without thinking of that day in February of 2009 or naturally of Mattie!




Quote of the day: Live as if you were to die tomorrow. Learn as if you were to live forever. ~ Mahatma Gandhi

Though the goal was to rest this weekend, I have done everything BUT that! I spent a great deal of time yesterday and today working on Foundation items. As the afternoon rolled around, I had signed up to attend a "Zumba Explosion" fundraiser in Alexandria, VA. This fundraiser was organized by Brooke Curran, who Peter and I got connected with through our friend Tina. Brooke loves to run and is committed to running a marathon in each of the 50 states, the District of Columbia, and all SEVEN continents. Brooke runs now to raise money for five local charities in Alexandria, VA. All charities that support a local children's cause!

Tina connected us to Brooke on Facebook and Brooke learned about our Whole Foods event on January 25. We had the pleasure of meeting Brooke in person at Whole Foods and we appreciated her support and enthusiasm for our cause. So when I learned about her mission to support children and that she was doing a zumba fundraiser today, it seemed like a great match for me. In fact my zumba instructor encouraged us to go, and there was a group of four of us from my zumba class in attendance tonight. The four of us danced together and chatted throughout the evening. On an aside, I have really learned that NOT all zumba classes and instructors are created equal. I have done zumba now on Princess Cruises, in my weekly class with Jenny, and now tonight at the Caryle Club with Zumba Fitness instructors. There is a lot of truth to the fact that you need to find the right class for you. The beauty of Jenny's class is she is a trained dancer and therefore her class gets you dancing, not only jumping around. I love the way Jenny's class makes me feel. Nonetheless, tonight got me to forget about some of my own pains for a while, and of course gave me the opportunity to spend time with my friend Heidi and to support a good cause.

I invite my readers to check out Brooke's website and the charities she supports. Brooke is an excellent example of someone who has taken something she loves and channels it to help and give back to others. Please visit: www.runningbrooke.com

Saturday, January 28, 2012

Saturday, January 28, 2012

Tonight's picture was taken in February of 2009. Yes it is blurry, but because it captures SO many wonderful things, I thought it was worth posting. Notice that Anna (Mattie's physical therapist) and Linda (Mattie's Childlife Specialist) were both wearing yellow gowns. That was because Mattie was isolated to his room because it was thought that he had a contagious infection like rotavirus or even worse MRSA. Isolating Mattie to his room was BEYOND painful. It meant that we couldn't really interact with others and Mattie couldn't go to the childlife playroom (this was done to protect the other children in the units from being exposed and catching this virus). Mattie was suspected of having such contagions at least five times during his treatment. These times were sheer torture for us, it was truly like being imprisoned (since the hospital rooms are VERY TINY). However, on this particular day, Anna and Linda brought in all sorts of games for Mattie to do, to get his body moving. Here Anna was demonstrating a rocket that Mattie could shoot up into the air by stomping his foot on this orange pedal. For you or I, this would be VERY simple to do. But for Mattie this was very painful. Mattie's right leg had a prosthetic, and he was cautious using it. However, even if he were to use his left leg to stomp on the pedal, he still had to balance on his right leg, and that too was cumbersome for him. In the midst of all this action, Mattie's big buddy came by to visit. You can see Brandon in the door jam, he couldn't come in because of Mattie's suspected infection. Brandon by this point was in remission from lymphoma but was rushed to the hospital for an appendicitis. So Brandon was in the room next door to Mattie recovering from a lot of pain. What this picture clearly illustrated was physical therapy with Mattie was NEVER boring and he was surrounded by people who really cared about him and his recovery.


Quote of the day (Actually a POEM): Annabel Lee by Edgar Allan Poe

It was many and many a year ago,
In a kingdom by the sea,
That a maiden there lived whom you may know
By the name of ANNABEL LEE;
And this maiden she lived with no other thought
Than to love and be loved by me.

I was a child and she was a child,
In this kingdom by the sea;
But we loved with a love that was more than love-
I and my Annabel Lee;
With a love that the winged seraphs of heaven
Coveted her and me.

And this was the reason that, long ago,
In this kingdom by the sea,
A wind blew out of a cloud, chilling
My beautiful Annabel Lee;
So that her highborn kinsman came
And bore her away from me,
To shut her up in a sepulchre
In this kingdom by the sea.

The angels, not half so happy in heaven,
Went envying her and me-
Yes!- that was the reason (as all men know,
In this kingdom by the sea)
That the wind came out of the cloud by night,
Chilling and killing my Annabel Lee.

But our love it was stronger by far than the love
Of those who were older than we-
Of many far wiser than we-
And neither the angels in heaven above,
Nor the demons down under the sea,
Can ever dissever my soul from the soul
Of the beautiful Annabel Lee.

For the moon never beams without bringing me dreams
Of the beautiful Annabel Lee;
And the stars never rise but I feel the bright eyes
Of the beautiful Annabel Lee;
And so, all the night-tide, I lie down by the side
Of my darling- my darling- my life and my bride,
In the sepulchre there by the sea,
In her tomb by the sounding sea.

My 11 year old friend, Katharina, emailed the poem, Annabel Lee, to me this morning. She is studying this poem in school and I imagine when she read this poem it made her think of my connection to Mattie. Annabel Lee is the last complete poem composed by American author Edgar Allan Poe. Like many of Poe's poems, it explores the theme of the death of a beautiful woman. The narrator, who fell in love with Annabel Lee when they were young, has a love for her so strong that even angels are jealous. He retains his love for her even after her death.

The portion of the poem that captured my attention was.... "That the wind came out of the cloud by night, Chilling and killing my Annabel Lee." Though I can't relate to a wind, my figurative wind was Mattie's cancer that blew into his life, consumed him, and took him away from me. Yet despite Mattie's death, we remain connected to each other. Maybe not in the same way Poe describes at the end, but our connection is more spiritual in a way, and as with Poe, the moon beams do have great significance to both of us. I was deeply touched by re-reading this poem, and impressed that an 11 year old would read this in school, and connect such a very loving and heart wrenching poem to me.

After the poem, I received another gift today. This one came in the mail from the founder of Bows for Hope, Lauren. As my faithful readers know, Lauren is 13 years old and an Osteosarcoma survivor. We met through Mattie's blog, because Lauren and Mattie were battling the same cancer at the same time. In Mattie's honor, Lauren developed her own non-profit, which creates beautiful duct tape bows. Her mission is to raise funds for Mattie Miracle and I welcome you to visit her website to hear her own inspiring story: www.bowsforhope.com

Lauren mailed me a check from her December bow sales! However, in addition to this wonderful gift, she made me 17 bows of hope! They are beautiful! What amused me though was also her creativity on the outside of her packing box. I took some pictures of this adorable box! I loved the marketing!

Here is a side view of the box!

This is what it is says on the bottom of the box!!!

This is another side of the box. It says.... "Let's Go BFH!" Which of course stands for Bows For Hope!

Lauren created these bows for me because she knows this coming Friday I will be meeting with the Girl Scouts and introducing them to Mattie and the Foundation through a formal presentation. When I learned about this opportunity through Heidi, I decided to reach out to Lauren. Since Lauren is a teen who uses her passion, creativity, and experiences to help others, I thought it would be meaningful for the Girl Scouts to see a live example of how teenagers can and do make a difference. So on Friday, I will also introduce these 12 girls to Lauren, her non-profit, and give each girl their own Bow for Hope! To me these bows are beautiful, and when you understand the story behind them, they are sheer miracles. Lauren is a courageous survivor, who knows first hand about the ravages of Osteosarcoma. Yet she lives with that knowledge daily and channels it to make a difference and help other children and their families. If this isn't the definition of a hero, I don't know what is.

Peter and I had a working lunch. One of the business school groups sent us 14 questions and a social values survey to complete on behalf of our Foundation. You should note however, that this group is using Mattie Miracle as a case example for a second business school class. So for this group, we are their center of focus for TWO classes. We will meet with this group on campus this coming week, but we wanted to give some thought to their strategic questions ahead of time!

After lunch, we walked Roosevelt Island together. It was a beautiful sunny day in the 50s, and while walking I heard a hammering sound. I knew immediately we had a Pilated Woodpecker in our presence. Peter saw it in the distance, and snapped a picture! Despite not feeling well, I needed to get outside and get fresh air. Roosevelt Island is always an oasis for us in the heart of the city!

Friday, January 27, 2012

Friday, January 27, 2012

Tonight's picture was taken in January of 2009 at Charlotte's birthday party. For my faithful readers, Charlotte is a very known and understood presence on Mattie's blog. Mattie met Charlotte in kindergarten and they became instant friends. Well that was until Mattie let me know one day in his dentist's office that the ring he got for a good cleaning was going to Charlotte. Not as a gift, but this was an engagement ring. I made a mental note of that, and figured that Mattie would forget and move on. However, one afternoon I was transporting Mattie and Charlotte together in my car to a birthday party. It was at that point Mattie popped out the ring and gave it to Charlotte and told her it was her engagement ring for when they get married. Mattie's feelings for Charlotte were real and he was very loyal to her and the beauty of it all was his feelings were reciprocated by Charlotte. Through Mattie's cancer battle, Charlotte was there. She visited in the hospital often and ALL the nurses, art therapists, and Linda knew exactly who Charlotte was and understood the importance of her in Mattie's life. There was just an aura around them. I have to imagine that there are certain children who were touched by Mattie's presence, a presence they will carry with them their entire life.

Quote of the day: A man's friendships are one of the best measures of his worth. ~ Charles Darwin

Today we learned our five percent earnings from the Whole Foods day on Wednesday was $6935. Before leaving the store on Wednesday night, I learned that the last non-profit who had a five percent day at Whole Foods in Alexandria earned around $6400. I told my mom about these numbers, and instantaneously in her head she calculated that we raised an additional $10,000 in sales for Whole Foods that day. The beauty of her mathematical mind! Some things are NOT genetic!!!!

Therefore our grand total we raised from the Whole Foods event is $8540. The Super Bowl raffle basket was a great idea and really brought several shoppers to our table and got them interacting with us. So from donations, selling 209 raffle tickets, and sales at Whole Foods, the day was a great success! The raffle basket was won by a man who we met toward the end of the evening. This fellow and I spoke for a while, and he actually got involved with helping adults with cancer, after cancer touched his friend's life. When I called this man to tell him he won the raffle item, he was stunned! He told me he never won anything and was very humbled by this.

Before heading to the mall today, I ran to the post office. We finally finished completing our Combined Federal Campaign (like United Way) application! This was no easy feat to do especially since it was our first time applying. Hopefully we should know if we qualify by the summer! For all our local federal government employee supporters, I will keep you posted!

I met my friend Heidi and her daughter's girl scout troop at the mall today. I was surrounded by 12 energetic and lively girls who were committed to assemble 100 teddy bears for sick children at Georgetown University Hospital. The girls are earning 50 service hours this year to qualify for a silver award from the Girl Scouts! Working with Mattie Miracle is part of these service hours. The girls raised $1000 by saving their babysitting money and from other part time opportunities to purchase the teddy bears. I had the opportunity to meet all 12 girls and their wonderful troop leaders. However, this is only part one of our interaction together. Next Friday, I am meeting the troop at Georgetown University Hospital. They will have lunch there and I will present to them information about Mattie and the Foundation. After the presentation, the girls will then go to each of the three pediatric units and the Lombardi Clinic to distribute teddy bears to sick children and their siblings.

For those of you who have never gone to a Build A Bear store, I assure you it is an experience. In the store is a stuffing machine. Each girl was given four or five bears today (the store premade 50 bears for us!). The bears come to them unstuffed. However, before they go to the machine which shoots fluffy stuffing into it, the girls pick a material made heart and rub it and give it wishes and then place it inside the bear. Almost in a way the bears are symbolically stuffed with HOPE and LOVE for its recipient. With the HOPE of feeling and getting better. I will share with you some of the pictures I took today for this special gathering.

The store leader had the girls do a bonding activity. The girls formed two circles. They then crossed arms and held hands. The goal was to unwind themselves without letting go of each others hands to form a circle in which they were holding hands normally by their sides.

I entitle this picture... Bear Happiness! As you can see Lexi loved the bears she made and Erin (on the floor on the right) also felt the same way!

Heidi's daughter Isabel was helping to organize the Teddy Bears as they were being made. As you can see the bears are adorable, and with their pretty bows, they will hopefully bring a smile to many children.

Ann and I represented Mattie Miracle today and Heidi took a picture of us with all the girls and their bears.

The store leader also took a picture of ALL of us, including the troop leaders. The adults in the upper left hand corner are: Ellen, Pam, and Trevor, and you can see Ann on the left hand side on the floor. On the right hand side on the floor is Heidi, and I am behind her.








I love Darwin's quote, because I do think friendships are a measure of one's worth. Based on how I have been feeling for the last couple of weeks and the intensity of this week, I was simply wiped out by noon. I had lunch with Ann and Alison today. I actually sat down while they purchased lunch for me because standing on a line was more than I could handle. I did not have to say that, they just understood that. As my faithful readers know, Ann and Alison were instrumental to Team Mattie, and these women saw me at my worst moments. However physically I am not at my finest hours and between how I am feeling and the emotional component of the week, I am on overload. Alison shared with me some feelings about Mattie and his connection with her son (who was in his kindergarten class) at lunch that were very touching and will remain with me always. I do have a mind like a steel trap. I remember what people say and especially how they make me feel.

Thursday, January 26, 2012

Thursday, January 26, 2012

Tonight's picture was taken in February of 2009. Mattie was in-patient and having his daily physical therapy session with Anna. However, you should know that Mattie typically did not like doing therapy alone. So that day, I was his therapy buddy and we played a version of twister together. Mattie was very good at this game! However, do not think that Anna got away with coaching him and giving him directions! Quite on the contrary. At one point that day, Mattie sat on the bench behind us and had Anna and I on the floor doing twister. Anna was a great sport and really did play along with Mattie's requests. I have no doubt that at first Mattie caught Anna off guard when they first started working together, but over time, I think Mattie influenced Anna in profound ways. Anna was already a great therapist, but through their special connection, and I think Mattie brought out skills and abilities in Anna she probably didn't know she had!

Quote of the day: Only those who will risk going too far can possibly find out how far one can go. ~ T.S. Eliot

I must admit after yesterday we are both in a bit of a fog today. Despite how we felt, Peter went to work and I refocused back onto the next Foundation event. Which is our psychosocial symposium scheduled for March 20, 2012 on Capitol Hill.

Despite being in a mental fog, Ann suggested we meet up and walk since today was in the 50's. We walked close to four miles together and talked about all sorts of things. One of the things Ann and I spoke about was the turnout last night at Whole Foods of high school seniors from Mattie's school. I did not make mention of this last night in the blog, but there were several groups of seniors who stopped by at lunch time and then for dinner to support our cause. Most of them did not come up to talk with me directly, which is why I did not write about it last night. However, while Ann was talking to me about this today, I did reflect on one senior who did personally come up to me and introduced herself and wanted to know that she supported our cause. She is a delightful, well spoken young woman, and I was inspired by her sincerity.

I have received a lot of feedback about our Whole Foods event and I appreciate every email and comment. I would like to share four messages in particular with you.......................

The first message is from my friend and colleague, Nancy. Nancy wrote, "What a fabulous day! Your descriptions, pictures, and the love and support of everyone aptly describes the quote that was used in last night's blog. Everything was fantastic and I was with all of you in spirit. Wow, $1,600 in donations and the raffle! That is great. I pray that it will off set some of the revenue needed for all of your handouts, of which there was plenty. Awaiting the tally of the 5% figure too. I'm sure that it will be above any expectation that you might have had. The Girl Scout girls and Mattie's other friends are a tribute to your little boy and the penny, glad that Mattie could be with you yesterday too. Such a paradox to feel joy at seeing the penny and sadness at the same time that you had to plan all this because he endured so much. Can't wait till tomorrow to see the pictures of all the bears that the girls will contribute to the Foundation and how you will distribute them. The love and spirit of your Foundation is so personal, that all these sponsors and supporters are drawn to help. Again kudos to everyone, especially, Peter and you for your tireless effort on behalf of Mattie and anyone who has to experience any part of what the three of you went through."

The second message is from my friend and Mattie's first preschool teacher, Margaret. Margaret is now the assistant director of Mattie's preschool and she and Kim (the director) graciously advertised our event to their entire school community. The response from Resurrection Children's Center was remarkable, from both teachers and parents! Today Margaret sent out a message thanking her school's families. Margaret wrote, "I want to thank each and every one of you who stopped by to chat and shop at Whole Foods yesterday in support of The Mattie Miracle Foundation. Vicki and Peter, Mattie’s parents and founders of the Foundation, were overwhelmed with the outpouring of community support and were particularly impressed, as was I, with the participation of our RCC community, past and present. Amazing days like this remind me how proud and grateful I am to be a part of this community, a community that represents the best of humanity."

The third message is from my friend, Carolyn. Carolyn wrote, "You have MUCH to be proud of - and know how PROUD all of your friends are of you two! You are amazing individuals!"

The final message is from Katie (vice president of Philanthropy for Georgetown University Hospital). I have had the wonderful opportunity to get to know Katie over the last several months and we appreciate her support of our Foundation. Katie wrote, "Great to see you all last night -- and wonderful work at Whole Foods! We enjoyed seeing you all and helping the cause and I enjoyed seeing all the lovely photos and stories on the blog -- so beautifully written."