Saturday, October 2, 2010

Saturday, October 2, 2010

Tonight's picture was taken in March of 2009. Mattie was in the PICU, and that particular day he received a visit from his school counselor, Susan. Susan brought Mattie this incredibly beautiful butterfly balloon, and this card (which was the size of a book). This card was NO ordinary card, because when you opened it up it played the hamster dance song. Susan introduced Mattie to that song, and it always made him laugh. I included the link to it in case you have no idea what I am talking about.
http://www.superlaugh.com/1/hamsterdance.htm
This card and this song brought Mattie great joy and lots of laughter. In fact, we ended up looking for this song on the internet, and Mattie just loved bouncing around to it in his wheelchair. I am sure it is hard to believe that a balloon and a musical card could transform Mattie's mood but I am living proof to the power of a thoughtful gift.

You should also note other objects hanging in the room. From the ceiling, you can see silk screen circles. Mattie decorated each of these silk screens, and during many hospital admissions, I would stand on a chair (to the great dismay of Mattie's nurses), and hang these decorations from the ceiling. Mind you with each admission I would decorate Mattie's room, and then when he was discharged, I would have to disassemble everything and box it up to prepare for the next admission. I am sure to the outsider this effort seemed ridiculous. But it wasn't ridiculous if you consider this two by four of a room was our home for days and nights on end. Also notice both sets of praying origami cranes in the room. One always hung on Mattie's IV pole and the 1000 cranes always hung from the ceiling over Mattie's bed. Just like the silk screen circles came out with each admission, so did the praying cranes. The praying cranes are still in my possession and they are boxed in Mattie's room at home.

Quote of the day: When you are sorrowful, look again in your heart and you shall see in truth you are weeping for that which has been your delight. ~ Kahil Gibran

Can one feel great sorrow without having experienced great delight? I do agree with this quote in the sense that Mattie was our great delight, and because he was such a force in our lives, Peter and I are now left with a major hole in our hearts and lives. A hole that produces incredible sorrow. Weekends are incredibly challenging for Peter and I. Not that the weekdays are splendid, but these days are structured with work for Peter, and somehow his structure impacts me. But the weekends are fluid. They of course weren't this way when we were raising Mattie. There was always some sort of plan for the weekend, and even if for some reason there wasn't, playing and engaging Mattie occupied our days. With Mattie being gone, there is a loss of our roles and at times our identity.

I had the opportunity today to go to Del Ray, Virginia and attend Art on the Avenue with my friend, Tina. Many of you may recall that Tina is Ann's neighbor, who hosted my birthday party this year. Art on the Avenue is a multicultural arts festival celebrating the diversity of the Del Ray community through the arts. More than 200 artists and artisans of all kinds sell their work. There were three stages of music, children's art activities, including scarecrow making and pumpkin painting, and vendors offering various food specialties.

This event was incredibly well attended, yet despite the crowd, it was very civilized and manageable. We had lunch together, strolled the main street filled with vendors, saw bands, a magic show, and bumped into numerous people we knew. I have come to the conclusion Alexandria, VA is a small place in many ways, with a community feeling that you just can't get living in the city of Washington, DC. Tina and I talked to various artists today, and we connected with two wonderful photographers who were displaying their works at the event. The way they captured their subject matter was intriguing and unique. One of the photographers was an art teacher by day, and clearly an artist in her spare time. She recently went on a trip to Italy, and as Italy can do, it inspired her. The architecture clearly moved her and she created a beautiful representation of the Colosseum in Rome. She had a delightful and warm personality and as I told her about Mattie's Foundation, she seemed eager to help in some way. The other artist created photographic collages. He did this by taking multiple pictures of a single setting or object, and then almost fit the pictures together like a jig saw puzzle to make a fascinating collage.

At the event, we bumped into Mattie's closest preschool buddy, Zachary and his mom, Katie. Zachary showed me something he bought at the event, it was a Lego necklace. Naturally I couldn't help but think of Mattie when I saw the necklace or Zachary for that matter. I also bumped into our friend, Olivia. As many of you know, Olivia was instrumental in helping us plan Mattie's celebration of life event at the Georgetown Visitation Prep School. I had the chance to meet all four of Olivia's daughters today, and naturally again, I couldn't help but feel the deep loss for who was missing from my life. Olivia and I always have a wonderful time talking and she asked me today whether I plan on doing private practice work because she felt that there were so many people who could use my particular style, personality, and skills. It was a very lovely compliment and I did take it to heart.

As Tina and I were strolling, we stopped at one of the performance stages. I began to look at who was on stage, and from a distance, I knew I recognized the face. It was NONE other than, THE MAGIC MAN! Mattie's head of the lower school, Bob Weiman. Bob was performing magic tricks, along with several sixth grade students from the St. Stephen's and St. Agnes School. They did a wonderful job, which isn't always easy to do when performing in front of a crowd of people. I snapped a picture of Bob performing a rope trick. In this particular scene you can see that he transformed a rope that was cut in two, and tied with a knot, back into a single, unknotted rope again!

Bob and I traded emails with each other at the event. One comment that Bob wrote to me, stuck in my head. It pertained to the Pork Barrel BBQ restaurant. The Pork Barrel BBQ restaurant was a vendor at today's event. When Bob saw this restaurant selling their products he couldn't help but think of Mattie. I couldn't have agreed more, and I told Bob, I was happy I wasn't alone in this thinking. The Pork Barrel BBQ restaurant was a great supporter of our 2010 Walk and also donated a case of their famous BBQ sauce to our raffle. Grief is a funny thing, because little things can set you off, things you may not always be prepared for or expect.

Tina and I met each other around 11:30am and we did not finish up at the event until around 5pm. So we were on our feet and quite engaged the whole time. But it was a beautiful weather day, and therefore a glorious day to be introduced to such a creative and charming fair.

When I got home, I began doing chores, but I could feel that internally I wasn't happy, and unfortunately I landed up taking my own issues out on Peter. I find when I observe fun, families together, and perceived happiness, this at times can send me for a loop. It makes me see and feel my reality of Mattie's loss in a very painful way. It is a hard reality to know that you will never see your child again, that you won't see him grow up, that you are no longer the recipient of those special hugs, kisses, and expressions of "I LOVE YOU," and when drowning in these feelings, it is hard to see a way out. I also find that it is hard to ride an emotional roller coaster of ups and downs, with yesterday being a more positive day, and toward the end of today, being a day that I find myself upset again.

Friday, October 1, 2010

Friday, October 1, 2010

Tonight's picture was taken in October of 2008. Mattie was in the hospital recovering from his first limb salvaging surgery. As you can see Mattie was all covered up, his right arm was immobilized, and we had his IV pole in toe. Notice the origami praying cranes hanging from Mattie's IV pole. This was the first beautiful set of cranes that were made and given to us by my friend Junko and her mom, Kazuko. The cranes became a part of us, and were with us on each hospital admission. They were made with love and prayers, and in many ways they were colorful reminders of love, friendship, and the power of positive thinking. In tonight's picture you see that Mattie was surrounded by three beautiful women. He had good taste. Going clockwise starting at the 9 o'clock position, you see Whitney (one of Mattie's favorite childlife interns), Lesley (another one of Mattie's favorite childlife interns), and Jenny (one of Mattie's amazing art therapists, who I became quite attached to). On that day, these ladies inspired Mattie to leave his PICU room and venture into the childlife playroom to blow bubbles. It looks like a fun activity, and it was, but our underlying goal was to get Mattie to take deep breaths since without such exercise after surgery, the lungs could have collapsed which would have caused additional complications.  As you can see Mattie started out with small bubble makers, but I assure you, by the time he was finished, a gigantic bubble maker was added to the mix, and it literally looked like the room was filled with bubbles and not people. Bubbles were everywhere and all over the floor. It was an interesting clean up issue, but in usual fashion, Whitney, Lesley, and Jenny did not skip a beat, and they certainly weren't going to stop an activity just because it was messy. If something worked for Mattie, they went with it. He had that kind of spirit about him, and when people sensed he was low or down, all the stops came out to try to change his mood. These are things I will never forget. These are also women who I not only admire but am grateful for their love and commitment to Mattie and my family. They made the endless moments in the Hospital bearable.

Quote of the day: There is only one way for you to live without grief in your lifetime; that is to exist without love. Your grief represents your humanness, just as your love does. ~ Carol Staudacher


I received a funny email today from my dad. He was joking with me about the terminology "instrument." As many of my readers know, I have been writing about a psychosocial instrument on the blog for the past couple of a days. I plan on discussing this instrument next week at the Hospital, and therefore I have been trying to learn as much about it as possible. My dad asked me in jest if this instrument was similar to a saxophone!!!! Naturally when we think instruments, one of the things that come to mind are musical instruments, not necessarily questionnaires (which is what I mean when I say instrument). My dad's email was worded just so, that I literally burst out into laughter. Perhaps I haven't made myself clear though to my readers. When I say I have combed the research literature looking for an instrument to assess psychosocial risk factors in families with children who have cancer, I am not looking for a drum, a guitar, a piano, or even a saxophone. I am looking for a standardized tool to measure a particular trait or construct.

The beauty of a standardized psychological instrument is that it is administered and scored in a consistent, or "standard," manner. Standardized instruments are designed in such a way that the questions, conditions for administering, scoring procedures, and interpretations are consistent and predetermined. Also the score one gets on such an instrument is interpreted by reference to the scores of a norm group. A group who has taken the instrument and considered to be representative of the population for which the instrument was designed. Lastly, a standardized instrument has known and accepted levels of reliability (meaning the instrument gives consistent results) and validity (meaning the instrument measures the concept it reports to measure). I realize this is MORE than you probably wanted to know, but I wanted to make sure you did not think I am carting in a tuba to Georgetown University Hospital next Tuesday!

Last night I received an e-mail from Ann, asking whether I wanted to get together in the morning to walk. So this morning I got up earlier than I typically would and met her. Ann walks much faster than I do, but I am slowly working up to being able to walk at her pace. We walked and talked for an hour, and covered about 3 miles together. While walking a flock of Canadian Geese flew over head. I simply love these birds, and though I really despise the cooler weather, they are the only signs of fall and winter that I really appreciate. I admire their loyalty to one another, and I admire their team work. After we finished walking, we had the pleasure of seeing Joan Holden, Mattie's head of school, walking to school. Joan was wearing pink, one of my favorite colors, but the color also caught my attention since October 1, is the first day of breast cancer awareness month. As so many of us know, pink is the symbol for breast cancer.

This afternoon, I went to the salon to get my hair cut. I have been going to the same stylist for years, and I have followed her to several different salons, until she and her husband opened up their own salon in Washington, DC. Celina met me when Mattie was a baby, and has followed his development throughout the years. When Mattie died, I think this really shocked her and her husband. I could tell she was concerned about me today because she hasn't seen me for months. As I reconnected with her today, I told her about the Foundation and my idea to pamper moms caring for their children with cancer this holiday season. I will be brainstorming with Linda (Mattie's childlife specialist) and our other Georgetown contacts about my idea. But ideally I would love for moms to be able to get massages and manicures. Celina has agreed to help me coordinate this, and I certainly appreciate her offer since I know she and her staff would do an excellent job. I literally spent three hours in the salon. Mind you I did not get that much done, but they wanted me to relax and not feel rushed, which I thoroughly appreciated.

I then met up with Peter for lunch. We actually ate outside, and the restaurant he took me to, made me feel for just a moment (fleeting of course) that I was sitting at a cafe in Italy. It was a lovely feeling, and the sun was out in its glory. After all the rain we have been receiving in the past two days, it was really welcomed. Over lunch we talked about Wednesday's Foundation board meeting, and talked about some of the activities that have been percolating in my head. Peter and I are coming together with a like minded vision for the Foundation, and it is a wonderful feeling to be on the same page. So overall in the grand scheme of our daily existence without Mattie, today was a more positive day, and I am trying to hold onto that feeling.

Thursday, September 30, 2010

Thursday, September 30, 2010

Tonight's picture was taken after October 20, 2008. I can tell because Mattie was unable to use his right arm in this picture, so therefore I know he was home recovering from his first limb salvaging surgery. Despite the pain he was in, you just couldn't keep Mattie down. We were outside flying a kite together, and this did bring him fleeting joy. But we took joy in whatever format it came to us in back then! Prior to having Mattie, I can't say I ever flew a kite. However, when Mattie came along, kite flying was something I wanted him to be able to enjoy, especially when visiting the beach. So one summer, Peter taught both of us how to fly a kite, and from that point on, Mattie and I always took advantage of a windy day outside our home. This was just one of many examples!

Quote of the day: Out of love comes suffering, out of suffering comes love. That is the mystery. ~ Louise Cordana

I have to admit that prior to Mattie's cancer, tonight's quote wouldn't be as meaningful to me. I most likely would have been able to appreciate the sentiment, but I would not have been able to truly comprehend the level of emotion and love that can come out of the death of a child. It is very evident that Peter and I suffer much, because Mattie was so special and loved by us. But in caring for Mattie, we saw the beauty in those around us. The beauty of a team who provided us meals, toys, and just about whatever we needed through a 15 month crisis. Some days I rather be naive to this level of love that can come from suffering, because that would mean that cancer did not consume Mattie. Despite our great loss and our emptiness, I am aware of the love that suffering brought us. I do not mention it often, but it is a factor in my life that I reflect upon daily.

I began my morning with a conference call to the researcher and psychologist at Children's Hospital of Philadelphia, Anne, who I have been telling you about the past couple of days. I enjoyed connecting with Anne, and learned much more about her instrument and feel better prepared to talk with Dr. Shad and her mental health team next Tuesday. As Anne mentioned to me today, I am unfortunately in an unique position of being a mental health professional and also a parent who survived pediatric cancer. Though I know that on some level, I appreciated her acknowledgement of this fact. Within a couple of weeks, I feel as if I have accomplished a great deal through literature searches, reading, and now connecting with the developer of the instrument. For me, I have to take these small steps as major accomplishments.

After talking with Anne, I wanted to take a walk, but it was pouring out. So instead, I went down to the treadmill in our complex's gym. I spent an hour on that machine, and walked 3.8 miles. The funny part about this is once I got off, I felt motion sick. I literally felt as if I was still walking, when I was sitting still. Fortunately that feeling passed quickly. When I came back home, I heard a noise coming from Mattie's room. It literally sounded like a bird was stuck in the room and was chirping. As I began to locate the sound, I realized it wasn't a bird, but a toy chickie I gave Mattie one Easter. I remember how he loved that chickie and how it chirped! To get to the chickie to shut off the sound, I literally had to jump over boxes, and even climb on top of Mattie's bureau to reach the toy. In the midst of doing this, I saw MOUSIE. Mousie was a rubber mouse that Mattie got as a prize from Kathie, his occupational therapist, years ago. Mattie loved this mouse, and I must admit I hadn't seen it for over a year. When I saw the mouse, I felt as if I was transported in time, and I literally couldn't even touch the mouse. I just looked at it. When I told Peter about this chickie episode tonight, Peter asked me whether the battery on the toy was going, or whether this was a message from Mattie?! With Mattie anything is possible!

I later met Ann at the mall for lunch, and we chatted and looked at clothes. In our journey, we ran into Michelle. Michelle's daughter and Mattie were in the same preschool classroom at Resurrection Children's Center. It was nice to have this chance occurrence and to have a few minutes to catch up.

I spent the rest of the afternoon, working on a handout packet to bring with me to the Hospital meeting next week. I may not be teaching at the moment, but I can say that the skills I had as an educator are coming into play as I create a handout about a psychological instrument. As I always told my students, once you acquire skills, they can be used in many different ways and settings. Not just in one set prescribed way.

Tonight, Peter and I met Jerry and Nancy for dinner. Jerry and Nancy are the wonderful musical team at Georgetown University Hospital who Mattie loved! We met Jerry and Nancy our first week of admission in the Hospital. We connected with them instantly and over time, they did so many creative things with Mattie, such as a weekly "name that tune" game! "Name that tune" also evolved into an exercise game, in which Mattie would have nurses come into the room and exercise with him to the music! In this picture with Jerry and Nancy, you can see they gave Mattie a gift. The gift was earned for naming correctly all the songs they played on "Name that tune" that evening. What Mattie did not know was that Jerry and I had been emailing back and forth for a week prior to the game, compiling a list of songs he knew and would guess correctly!

As always we had a fun time with Jerry and Nancy. When we meet them, we always go to the same restaurant and we order the same Washington tradition, known as the Mighty Moe. Which is an incredible hamburger that is hard to describe. Tonight at dinner Peter shared a story about taking Mattie fishing on the Potomac. That particular day, Mattie caught a fish (they caught it and then released it!), but Peter did not catch anything. Mattie was feeling pretty proud of his accomplishment, especially in light of Peter's results. As Peter was taking the anchor up from the row boat to come back to shore, attached to the anchor were two catfish. The catfish were jumping all over the place in the boat, and upon further inspection Peter could see they were tangled up in someone else's fishing hooks that was thrown back in the water. So flopping fish and all, Peter held each fish and removed the hook from their mouths, and threw them back in the water. I have heard that Mattie observed the whole process and was concerned about the fish. This really bothered him that people would leave the fish like this, but he was proud of Peter for freeing the fish. I heard this story once before, but it wasn't until tonight that I recalled it. It is special to be able to share these stories in a spontaneous way, and it is special that we still have this connection with Jerry and Nancy. Mattie left us with many wonderful memories and many wonderful friends, who we wouldn't have met without him in our lives.

Wednesday, September 29, 2010

Wednesday, September 29, 2010

Tonight's picture was taken in October of 2008. Mattie was visiting his good friend, Campbell's house. This was before Mattie had undergone any of his surgeries, so getting around physically and holding things at that point were easy. Mattie and Campbell had a great time that day decorating Halloween cookies and just spending time together. Though I am not happy Mattie had only one year of elementary school, I am so happy he met and made some wonderful friendships. For some of us it takes a lifetime to meet such friends, Mattie did this in one year!

Quote of the day: The heart hath its own memory, like the mind. And in it are enshrined the precious keepsakes, into which is wrought the giver's loving thought. ~ Henry Wadsworth Longfellow


I woke up with all sorts of aches and pains from walking yesterday,  however, despite the pains, I got myself together and went back out there today. Pedometer and ipod in hand! Surviving the first 15 minutes is the hardest, but after the pains start to subside, the remaining time walking is pleasant. I managed to walk 3.2 miles today, and I find during my first several minutes walking I land up sighing a lot. I frankly do not even realize I am doing it, but it is through walking that I try to let go of my stresses and thoughts. I spend a good part of the time breathing, listening to music, and taking in the sights of the greenery I am passing. In a way, walking has become therapeutic and my time. I am not a person who typically takes time for myself, but I have found the past two days that when I walk it is on my time, my pace, and I have also made the conscious effort to disconnect from my phone while walking. This is a major step forward for me, because I typically have my phone with me at all time. A major aftermath of cancer treatment!

After this walk today, I met up with Ann. We visited her mom and had lunch together. Ann and I chatted about this instrument I have located, and through our discussion, I realize I have more questions about it and how it could be used at Georgetown University Hospital. Fortunately, the researcher who created the instrument has been delightful to approach, and she has agree to talk by phone with me tomorrow morning.

This afternoon, I journeyed to Mattie's lower school campus. One of the kindergarten teachers, Donna, had been chatting with Junko (my friend) about inviting me into the classroom and perhaps helping in some way. I appreciate Junko's help in coordinating this meeting. Donna met me outside today, and we walked into the building together. We made hot tea and then chatted for about two hours in her classroom. Mattie did not have Donna as a teacher, but because his classroom was right near Donna's I had the pleasure of interacting with her several times. Donna has attended many Mattie events over the past two years, and I have had the opportunity to talk with her at the Mattie March and the Mattie Miracle Cancer Foundation Walk.

Donna asked me about my interests. I told her that was a good question, and most likely I would say that my interests have evolved post-cancer. Everything about me has changed post-cancer. I told Donna that ironically I find that I can work with children and be around them, but I have a hard time being around moms. Mainly because the natural things for moms to talk about are their children. It is hard for me to participate in these conversations, and when I listen to them, I find that I get a sense of intense sadness inside because I no longer am part of this world, and naturally because Mattie is not a part of our lives. I discussed the fact that I love art, gardening, cooking, theatre, and musicals. Donna then shared with me a story the children in her classroom had just read, Laden's book entitled, When Pigasso Met Mootisse. I remember Mattie reading this book. It is about "a porky Pigasso and a bullish Mootisse, who start out as neighbors but end up feuding when they start criticizing one another's work. Now rivals, they transform their farms into bold works of art and then build a fence between the properties. However, the painters find that they miss one another's company and they each paint an apology on the fence-paintings that wow the critics and make the two fast friends. Based loosely on the real-life relationship between Picasso and Matisse, Laden's tale is a wonderful tribute to these exceptional talents and to the concept of accepting the ideas of others." As our conversation evolved, we both realized that it would be wonderful to bring these artists alive for the children. Ideas were flowing, and I discussed some of the thoughts that came to mind such as showing the children what part of the world Matisse and Picasso were from, to introduce them to some child appropriate facts about their lives and who they were as people, and to allow the children to see slides of their masterpieces. One of my goals is to help children become in touch with their feelings while looking at these works of art. Art evokes feelings, and I believe this is a skill one can learn and appreciate early on in life. In fact when I mentioned the importance of feelings, Donna showed me the feeling's corner in her room. She has about 20 words laminated in her classroom, and each word describes a feeling, like happy, proud, sad, angry, etc. Each feeling word is also matched up with a corresponding colored pom pom. If children are feeling overwhelmed or frustrated, they can go over to this corner and pick out the pom pom that captures how they are feeling. I was thrilled to see this because in kindergarten it is hard to verbalize feelings at times, and in several instances the children may not know the word to describe their feeling yet. But having this feeling outlet is a great way to help children become in touch with their emotions.

Other thoughts that Donna and I brainstormed were hands on creative projects, where the children could create their own art work in the style of Picasso or Matisse, and in the process transform the classroom into an art gallery. Included with these ideas also involved creative snacks, that perhaps highlighted treats from France and Spain, where Matisse and Picasso were from. Needless to say, this is a work in progress, and over the course of the next month, I will be researching these two artists and coming up with innovative ways to capture the minds of the children. As my lifetime friend Karen said to me tonight, "once a teacher, always a teacher." As I said to Donna today, I am used to teaching undergraduate and graduate students. Not five and six year olds, but as I design whatever I plan on doing, I will keep Mattie in mind. Donna and I talked about a three part series that I would develop, that would take place over a three week time frame. I do appreciate Donna including me this year within her classroom, and I appreciate her intuitive understanding for my need to connect with children. During our visit together, Mattie's kindergarten teacher, Leslie, came by to chat with us. Leslie was captured by our discussion of these artists, and we began to talk about how to integrate this content throughout the four kindergarten classrooms.

Before I left, Donna shared with me a story about Mattie's tree. She said that her class was outside at recess, and two girls found a couple of the origami praying cranes (that were placed on Mattie's tree during his first anniversary) on the ground. The girls were not aware of Mattie's tree, but they were intrigued by the cranes and in a way they felt as if they magically appeared. The girls showed them to Donna and they told Donna they wanted to take the cranes home. Donna told them that the cranes belonged to Mattie's tree, and that afternoon Mattie's tree was coined the "Origami Tree." The girls then reattached the cranes back to Mattie's tree. What I find so fascinating about this is that the tree has been there since the beginning of the school year. Yet it was the cranes flying off the tree that got the girls to stop and notice the tree. I told Donna it was as if the tree was calling for their attention and recognition.

As I was saying good-bye to Donna, we saw The Magic Man, Bob Weiman (the head of the lower school). Bob walked me out to my car and as we were chatting he acknowledged how hard it must be to come to campus. However, he wanted me to know that I have come a long way in one year's time. I went from not being able to even drive by the campus, to now being able to walk on campus and even enter the buildings. We both concluded that Mattie's tree has helped me with this process. In a way, the tree makes me feel as if a part of Mattie is still at school, and therefore visiting there is about remembering Mattie. I appreciate Bob's sensitivity and his willingness to share his observations with me.

When I got home this evening, Peter and I went through the mail. In the mail we received this beautiful brick with an inscription on it that reads: "In Loving Memory
Mattie Brown
King of the Legos
Classmate & Friend
Peace
Sam, Maddie, & Ryan"

A similar brick will be placed in the gardens at Holy Trinity Church in Georgetown, where Mattie was to begin CCD and where Mattie's funeral took place. We want to thank the Goff Glennon family (a wonderful family we met at the Resurrection Children's Center) for this generous contribution and for helping us keep Mattie's memory alive. We will cherish this brick, and I couldn't agree more..... he was the KING OF THE LEGOS!

Tuesday, September 28, 2010

Tuesday, September 28, 2010 -- Mattie died 55 weeks ago today.

Tonight's picture was taken in June of 2009, and from my perspective it was classic Mattie.  Mattie  was in a physical therapy session with Anna. Anna was at the other end of the rope. Mattie and Anna were having a tug of war contest, while sitting on scooters. Naturally Anna could have just made Mattie do exercises to strengthen his arms and straighten out his legs. But rote exercises and movements were boring to Mattie. So this was just yet another example of how Mattie's sessions were transformed into active games, which were both fun and gave Mattie a work out. When I look back at these pictures I ask myself, how did I know to bring a camera to everything? The answer is I DON'T know! Maybe on some level I wanted to document the amazing fight Mattie was enduring and attacking head on, or maybe on some level I realized that these photos would be very important to me after the fight was over. But when your child is diagnosed with cancer, I can assure you that it is hard to think clearly at times, especially when sleep deprived. Despite that, I am so grateful that something within me pushed me to capture pictures, because tonight's picture illustrates the Mattie I knew and loved..... a boy with energy to take on a challenge.

Quote of the day: Death ends a life, but death does not end a relationship. If we allow ourselves to be still, and if we take responsibility for our grief, the grief becomes as polished and luminous and mysterious as death itself. When it does, we learn to love anew, not only the one who has died. We learn to love anew those who yet live. ~ Julius Lester


It is hard to imagine that Mattie died 55 weeks ago today. It honestly just doesn't seem possible. As time marches on however, my life seems more and more fragmented. Fragmented into two pieces, life with Mattie and life now without him. There are days when I struggle to remember my life as a mom. Was I ever a mom? When I saw Ann today, she asked me again whether I would like to stay connected by a listserv to the parents in Mattie's grade. She asked me this question last year, and I outright said, NO! This year, I had no response to the question. I am not sure how I feel about this form of connection. Naturally this listserv exists so parents can plan events and communicate with each other regarding grade level activities. I certainly am deeply fond of the parents I have met at Mattie's school, but this listserv seems to be a reminder to me of what is missing in my life, rather than as an outlet to connect with people who are part of my community. Perhaps in time this will change for me, but at the moment hearing parents talking about their children is still difficult for me.

Though I reflect on the loss of Mattie each and every day, as it is September 28, I also reflect on the loss of my maternal grandmother. Today was her birthday, and she would have been 103 years old! It is hard to believe that she died sixteen years ago. It too feels like yesterday. Though I was able to put my grandmother's death, over time, in context because she died in her 80's, I still find that I reflect on her life and the profound impact she had on my life. Keep in mind that my grandmother always lived with my parents and I and I was her only grandchild. So we were very close to each other and I can thank her for so many things like the art of cooking and learning to provide loving care to animals (especially those animals that were homeless!). So on this Tuesday, I reflect on Mattie and my Grandmother, Anne. May they be looking out for each other now.

I began my day by text messaging Peter. I had made a commitment to begin walking today, but when I looked outside, I wasn't inspired at all with the darkness. Peter encouraged me to try walking, and if it began raining, then I could just come inside. It made logical sense, but I needed that vote of confidence. Last night Peter armed me with two things. He gave me a pedometer to calculate the distance I was walking and he also gave me Mattie's ipod to use. I have to admit I had the foggiest clue how to use Mattie's ipod. Fortunately Mattie was more savvy than I am! When I started walking this morning, I felt as if I had Mattie in hand with me. I literally started walking, and within five minutes I felt aches and pains, but I just walked through the pain, until it disappeared. I landed up walking 2.93 miles, and I felt by the end I had accomplished something, and in the process the sun also came out! I realize I won't be able to walk like this everyday, but I also realize that establishing some sort of routine like this is good for my head.

This afternoon, I saw the beauty of technology unfold. I was able to continue dialoguing with the researcher I told you about in last night's blog. I learned more about the instrument she designed to assess psychosocial risk in pediatric cancer families. She is in Pennsylvania, and yet within minutes I had answers to my questions and documents being emailed to me. At the same time, I was keeping Dr. Shad (the director at the HEM/ONC pediatric division of Georgetown University Hospital) posted on my progress, and she was writing to me from Brazil. Somehow all of these connections made me feel as if I was accomplishing something.

This evening, I landed up doing laundry, and while undertaking that process I ran into a neighbor in our complex. This is a neighbor who knew me prior to Mattie developing cancer. She asked me whether I returned to work at the University and when I told her I hadn't, she wanted to know if I missed it. I am sure my change in interests and direction in my life are confusing to others. But in all reality, I am not sure how you could live and breathe what Peter and I did and somehow come out unaffected. It would be impossible! My neighbor asked me if helping those with cancer would depress me more, or serve as a constant reminder of Mattie's death. This was a good question, but my response was whether I help others or not, Mattie's death and his loss will always be a part of me. That simple fact is sad.

Peter forwarded me an e-mail he received tonight from a former colleague of his at Arthur Andersen, Bill. Bill is now the CEO at Network for Good, a non-profit which provides online fundraising services for nonprofits, including online donation processing, email outreach, and online surveys. The Mattie Miracle Cancer Foundation uses Network for Good to help us have an on line presence, to stay connected to our supporters, and we have found their tools easy to use and an asset for any sized non-profit. For more information about Network for Good, please visit: http://www1.networkforgood.org/

Bill participated in the Make-A-Wish Triathlon on September 25. The Triathlon is an exciting 1.5K ocean swim, 41K bike and 10K run for up to 1,000 athletes. Hosted in Bethany Beach, Delaware, the event is in its 27^th year. Bill swan, rode, and ran in Mattie's memory, and was successful in raising a substantial amount of money to help the Make-A-Wish Foundation grant wishes to 33 children in the Mid-Atlantic region! Congratulations Bill and thank you for keeping Mattie's memory alive. Bill wrote, "I just wanted to say thank you for your support in Mattie Brown’s memory this weekend. It was a beautiful day, the race was great, and most importantly over $250K was raised by 400 triathletes – that’s 33 kids’ wishes which will now come true. You helped me do more than my share raising $1,100. I had a picture of Mattie Brown on my back and his courage on my mind throughout the race. I was happy with my time of 2:39 which earned me 79th place (didn’t win… but there’s always next year). Thank you so much for supporting me and for remembering Mattie."

All proceeds and pledges from the event benefit the Make-A-Wish Foundation^®  of the Mid-Atlantic, whose mission is to grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy. For more information about the triathlon, please visit:
http://www.midatlantic-community.org/Page.aspx?pid=500

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Today is Tuesday and I am thinking of you... and of course thinking of your Mattie. Much love, on this Tuesday and everyday."

Monday, September 27, 2010

Monday, September 27, 2010

Tonight's picture was taken in June of 2009 in the physical therapy gym at the Hospital. Pictured with Mattie were Anna (Mattie's physical therapist) and Brandon (Mattie's big buddy at the Hospital). What I love about this picture was Mattie was sandwiched between friends. Brandon was holding out his hand to encourage and support Mattie! Brandon came into clinic to motivate Mattie several times in his course of therapy. This was SO helpful because Mattie would occasionally go through slumps, in which he would become upset, experience pain, and really did not want to take those scary steps to learn to walk again. Mattie had been through so much, and frankly I couldn't blame him. In all reality what he was able to accomplish was amazing. I would like to see adults have surgery to remove bones in their two arms and a leg, and see how well they would be feeling afterward. 

Quote of the day: I have grown to believe that even as these losses have broken me, so can they heal me..... When someone I love dies, I buy a candle. There are twelve across my mantle now: one for my father, one for my mother, one for my daughter, two for my grandfathers, and seven for my babies who were born too soon. It is a simple, comforting act to light them in reverent remembrance of each life. Whenever anyone stops to count these candles, the question I am most frequently asked is, "How did you do it?" How did you survive?" My usual answer: "I don't know." ~ Dana Gensler

It was an overcast and rainy day today in Washington, DC. Not my favorite weather, and unfortunately for me, I am one of these people who is deeply affected by the weather. Seeing and feeling the sun, makes a difference in my outlook. I decided in the morning that I did not feel like going out today, however, as the morning wore on, I asked Peter if he had time to meet up for lunch. So for an hour, we met and chatted. We talked about Foundation items, and in our conversation I realized there were several tasks that I really wanted to take on today so that we would have the possibility of accomplishing some of the concrete goals I have in mind for this Fall. Getting out and talking about these items today, enabled me to come back home, and address each one.

The first connection I made today was with a researcher and psychologist at Children's Hospital of Philadelphia (CHOP). I have been reading her articles about a research instrument she created and is now being used at CHOP in their pediatric oncology clinic. At CHOP, each family is given this instrument, to assess the degree of psychosocial risk a family is in at the time of diagnosis. The instrument is intriguing because it also has good predictive validity, meaning that risk factors presented at the time of diagnosis tend to be good predictors of ongoing distress throughout the treatment phase. In any case, this screening tool caught my attention, and what should be noted is there is VERY LITTLE empirically based psychological assessment tools available to the pediatric oncology field. I look forward to connecting with this researcher, learning more about her instrument, and seeing how such an instrument can be brought to the Georgetown University Hospital.

The second connection I made today was with one of our contacts at Georgetown. I would love for the Foundation to be able to assist Linda (Mattie's childlife specialist) in some way during the holiday season. I am very aware of the fact that many organizations plan all sorts of activities and bring gifts for the children during the holidays, but there isn't much planned for the caregivers of these children. This is where I believe the Foundation can assist with an activity. I have brainstormed three possible activities and am looking for feedback from the hospital's perspective.

The final connection I made today was with Dr. Shad (the director of the pediatric HEM/ONC practice at Georgetown). Dr. Shad just landed in Brazil when she got my message, yet despite her travels, she still responded immediately. She is a remarkable lady and physician, and I was so happy that she responded positively to some of my ideas I presented to her electronically. Hopefully next week, I will be able to meet with the mental health staff and Dr. Shad to discuss these ideas further.

Despite feeling a bit lost today and out of sorts, I did try to focus my energy on getting some things accomplished. That was a good feeling naturally, and my motivator behind my actions is always Mattie. It is also my goal to begin walking again. It sounds good in theory and I feel better motivated to do this now, but then I take one look at this weather and I have second thoughts. I do think having some sort of exercise routine will be good for my body and head, but I am very aware of the months of atrophy I experienced while living in the hospital. A way of life I continue to be paying for physically and psychologically.

Sunday, September 26, 2010

Sunday, September 26, 2010

Tonight's picture was taken in June of 2009. Mattie was home and playing in his sandbox. Many of you have heard me talk about this sandbox lately, and how we have relocated it outside our deck door. Well this is a picture of the infamous sandbox in the shape of a frog! Mattie had pieces of wood in the sandbox to use as ramps for his cars, and despite the fact that he had a broviac central line in his chest, I felt it was important for him to play in the sand and to be 7 years old. From this picture, I think one could perhaps draw the conclusion that Mattie always loved the sand. This however, couldn't be further from the truth. It took Mattie three years at least to get adjusted to the feel and texture of sand. He may have been a slow starter in that department, but once he acclimated to sand he made up for lost time. Mattie learned to appreciate the versatility of sand, to play with, to build with, to feel, and to create endless possibilities!

Quote of the day: The years of our marriage are few when measured against a lifetime. We have encountered joy and shared confidence in our future. We have known hope's ending and have borne the death of dreams. We have together been diminished. Even minor aspirations have eluded our grasp in the cruel shadow of the loss of our child. Yet we still share our lives. And though the brightness we once knew has fled, we have grown enough to sense a return of laughter - an uplifting to shatter the dimness, to remind us that tomorrow will come and dreams may again be born. ~ Don Hackett

I came across tonight's quote in the book of quotations that my friend, Denise, gave me. It captured my attention because it was written by a man to his wife. This man clearly reflects on how their marriage has not gone the way they had envisioned or expected, that through their union, they share the death of their child and of their dreams. Thankfully most married couples do not share this commonality with us and frankly who would even think about having such a grim future when getting married. Certainly all marriages face hardships, it is a fact of life that is inevitable, but the death of a child is neither predictable or understandable. Dealing with such grief can be wearing physically and emotionally, and it has done irreparable damage to Peter and I. However, finding a way through this, to continue to grow together, and to rebuild meaning in our world takes inordinate amounts of courage and strength each day. 

Peter and I had a slow start to the day, and neither one of us felt compelled to race around or do much of anything. Which was fine considering we both had a very busy day yesterday. I did visit with Mary, Ann's mom, today for a couple of hours. Mary was at Ann's house, and we sat outside together on the porch and I gave her a manicure. As we were sitting, Mary could see her reflection in Ann's window, and Mary was startled by what she saw. I tried to explain to her that for 81 years of age she looks very good, but that I can imagine when she sees herself, she no longer sees the person she remembers. A person before developing a neurological disease. Mary's observations of herself caught my attention, mainly because I realize Mary doesn't always have the opportunity to see what she looks like on a regular basis. I appreciate Mary's insights and I appreciate her openness to discuss what is on her mind, something we share in common. As I left Mary today, she wanted me to know that she appreciates all the ways I pamper her. Mary has become my friend, and whether she acknowledged what I do for her or not, I would continue to do it, nonetheless, having feedback always helps to guide my behavior and in a way her honestly only strengthens our friendship.

When I got home this afternoon, I started cooking an early dinner. Peter and I chatted with each other, and this time that we connect and share thoughts and feelings in an uninterrupted manner is so important. I find trying to navigate in world without Mattie very difficult, and just when I think I may be the only one feeling this way, I receive a message from a fellow osteosarcoma mom that normalizes my reality. Today I read a posting by Karen, a woman who lost her son to osteosarcoma last October. Karen still maintains her son's blog, and when I read what she wrote, I simply had to pause, because it could have been me writing the message. We are feeling similarly and the profound nature of the loss makes it hard to come to some sort of reconciliation about the death. There are no solutions to grief, but I must say I do appreciate hearing the words of other moms who lost their children to osteosarcoma. These women understand the battle all too well, and they also understand the daily battle we now face living.

Saturday, September 25, 2010

Saturday, September 25, 2010

Tonight's picture was taken in June of 2009. Mattie was sitting at the art therapy table in the Lombardi Clinic. Next to Mattie was Katie (one of Mattie's favorite HEM/ONC nurses, who he affectionately called Dorothy, for the beautiful red shoes she wore), and his great buddy Jocelyn. If you look closely you will see that Mattie was holding something made out of wood with eyes on it. That day Mattie made alligators, complete with eyes and sharp teeth. In fact, these alligators are clipped to my kitchen pot racks, and stare at me each day. Mattie's physical presence is no longer with us, but his art surrounds us and reminds us of him each and every day.  

Quote of the day: Our grief always brings a gift. It's the gift of greater sensitivity and compassion for others. We learn to rise above our own grief by reaching out and lessening the grief of others. ~ Robert Schuller


I had a bad night of sleep on Friday. Mainly because I had a disturbing dream. Parts of the dream were fuzzy, and others very crystal clear. I was living in a place like Florida because it was warm and I had easy access to the ocean. In the dream I was taking many children to a movie theatre to see a film. All the children were young girls, around 8 or 9 years of age. In addition, to these little girls I had friends in the dream with me who I hadn't seen in a while. Friends that go back to the days when I was in elementary school and even in college. In the theatre, the girls were excited to see the film. The lights go down and the movie starts. Then about five minutes into the movie, the house lights come on, and the management for the theatre comes in and makes an announcement. They let us know that a tropical storm was going to hit, and we needed to be prepared because it had come on suddenly. In this particular theatre, one of the walls, was made completely of windows and I could see the ocean and the sky. Within minutes, in the dream, I could see ominous waves hit the theatre and I could see the clouds swirling around. Then before we all knew what was happening a tidal wave hit the theatre, and the theatre was removed from its foundation and was floating in the ocean. I could feel the panic that I was in and I was desperately trying to calm the girls down who were with me. We then determined the only way out of this disaster, was to find a way to escape the theatre, which was now slowly sinking under water. Miraculously, I got all the girls to safety and then one of the girls screamed at me and asked me where was ABBIE?! In my dream, I was trying to understand this request, and realized somehow that Ann's daughter was in this theatre. Again I panic, because I did not realize Abbie was with us, and once I figured this out, I knew that I could't let Abbie drown. So I go back into the water (note to readers.... I AM NOT A STRONG SWIMMER!), and I found a girl with red hair, who looked like Abbie, but when I grabbed her hand under water, I realized this wasn't really Abbie afterall. So I continued to go back at it. I finally found Abbie and pulled her out of the water to safety.

Needless to say, I woke up at 3:30am, and I had a massive headache from this dream. I found this dream disturbing, because I could hear the screams, sense the panic in the children, feel the waves, and this was bad enough, but Abbie in the dream was a twist I did not expect. In my dream, I am fighting to save CHILDREN. I can't help but think that I subconsciously am trying to work on this struggle within myself, which is having to accept that I couldn't save Mattie. However, when Abbie came into my dream, I found myself finding the energy to jump back in the water because I recall feeling that I did not want Ann to go through what I am now dealing with. So to me the dream was confusing and has multiple meanings, perhaps it is also tied to my desire now to help children and their families fighting the ultimate battle, cancer.

This morning Peter met up with Ann, her son Michael, and Michael's friend and headed to New York. We also learned that our friend, Peter (our Foundation's treasurer), was also going to today's game with his family. The power of the blog, since this was all deduced from last night's posting! Thanks Debbie!!! What I love about this picture is we have two opposing team shirts standing right next to each other. For the Red Sox fans who read the blog, I am sure you are all thrilled over tonight's game!

While Peter was journeying to New York, I was attending the memorial service of my friend's mom. Mary Ann's mom died of cancer in July. I had the opportunity to meet Mary Ann's mom (Connie) several times throughout the years, since Mary Ann and I went to graduate school together. Connie was a very sweet and gentle woman and she happened to find Mattie delightful and would send him gifts periodically. When I recently learned of Connie's cancer and what Mary Ann was about to face, it was overwhelming. As Mary Ann said to me today, I helped paved the road for her. I told her I wish this was a road she never had to see or traverse.

When I attended Connie's memorial service, my main goal was to support Mary Ann. I wasn't sure what to expect, but I am pretty sure I never thought that the Reverend was going to deliver a message that would deeply touch my heart. But in essence his words, which he reminded us were not his words, but God's words in the Bible, were powerful. He began by saying that when you are with God, all pain is gone. He was speaking to the end of Connie's pain from cancer, and I naturally couldn't help but reflect on both Connie and Mattie. As he continued to talk, I found myself absorbed and yet mortally wounded at the same time. He was saying that this life is painful and filled with heartache, and therefore we must believe that there is something better out there. I related to this comment ten fold. He wanted us to understand the importance of having faith in God and knowing that we all have a place or "mansion" in heaven.

The Reverend then spoke to us about what it was like when Jesus' friends and disciples learned that he was going to die. They were confused, perplexed, and most of all, as any good friend, they couldn't understand why they weren't able to go with him. They couldn't imagine their lives without their friend in it. However, the Reverend explained that in living one has to learn to trust certain people, people who you are close to. Not everyone deserves or earns this trust, but Jesus felt that if his friends loved him, they needed to trust him. They needed to understand that he was dying for a purpose, and the purpose was to provide them and all of us a PLACE in heaven. The Reverend explained that there are three things that God wants us always to remember in life..... PLACE, PERSON, and PROMISE. I am not eloquently delivering this message, but he was saying that if we believe in God, then we know that he will always have a place in heaven for us, and this place has been secured for us through the sacrifice of Jesus' life, and through this sacrifice, a promise has been made to us eternally. Well by the time he delivered this message, which I assure you, was done in a passionate, open, and compelling manner, I was simply crying. I went through a half a packet of tissues today. Then people got up to talk about their memories of Connie's life, and her friends were deeply moved by her love and generosity of spirit. Hearing about how such a tender person lost her life through cancer, was a little hard to manage. It was a beautiful remembrance of Connie today, and though there was lunch after the memorial, I had to leave. I just couldn't compose myself, and when I went up to say goodbye to Mary Ann, I gave her a hug, and really couldn't say much more. I was in tears, she understood, and in the end I did not feel like I was much of a support for her. However, as time goes on, I find that at times I am truly able to face Mattie's death, and when those moments happen, they aren't pretty.

When I left the church, I called Peter. He was in route to New York, and when he first started talking to me, he wasn't sure if I was hurt, injured, or had an accident. I spoke to him for a while, and it literally took me a good hour to decompress for the service. I knew I couldn't go directly home, so I went grocery shopping instead.

I made lunch and sat on our deck this afternoon. Patches was right along side me, and I needed this quiet time before moving onto the next activity. I visited with Mary, Ann's mom, today because I know she misses Ann when she can not see her daily. I helped Mary with dinner and then after dinner I suggested we sit outside. Mary's caregivers took issue with my suggestion and said to me it was too hot for Mary. Mind you I have sat outside in much hotter weather with Mary. I overrode their decision, and said she needed to go outside and have fresh air. I know what it feels like to be in an air conditioned environment all day long, and I also know how wonderful it is to get a reprieve from that and take in the sun and see trees. Mary and I sat outside together for a half an hour and we chatted about vacations she took during her lifetime. When I left Mary tonight, she had two comments. The first comment was she was happy I suggested we sit outside, because she said it was so "pretty" to see the trees and the second comment is she wants to know how Ann was lucky enough to find a friend like me. She says she never met someone (who she wasn't related to) who takes such good care of her whole family. It was a very sweet and thoughtful comment, and I certainly appreciate Mary's ability to be able to express her thoughts and feeling with me.

After I visited with Mary, I headed to my friend, Tanja's house. Tanja hosted a successful Pampered Chef party. I have never heard of the company Pampered Chef. But I learned tonight that this company was bought out by Warren Buffet. Interesting! In any case, there were seven women in attendance tonight, and we learned to work together to make an appetizer, sangria, and chocolate lava cake using Pampered Chef kitchen gadgets. We all had a good time chatting with each other, cooking together, and tasting the finished products. Twenty percent of the proceeds from tonight's event (since among the seven of us, we bought a lot of products!) go to the Mattie Miracle Cancer Foundation. I am grateful to Tanja for hosting such an event, and certainly I appreciate Mary, Tina, Viki, Jamie, and Laura for attending.

For those of you who would like to learn more about Pampered Chef and/or are looking for kitchen products for yourself or a friend, you are welcome to visit this link:

http://www.pamperedchef.biz/rklazor?page=product-order-how-to-purchase



If you would like the Mattie Miracle Cancer Foundation to receive a portion of the proceeds from your purchase then you will need to enter in the following name as your host on the webpage: Tanya Harding
ALL orders for the Pampered Chef have to be submitted by 9/29/10. Thank you for your consideration!

I spoke with the Pampered Chef consultant tonight and was already brainstorming ways we can get her involved with the Foundation. I am thinking about ways to spoil moms around the holiday season who are caring for children in the hospital with cancer. Rachel, the consultant, was open to pursuing these ideas with me, and I appreciated her openness to support our cause.