Tonight's picture was captured by Peter. Mattie was home between hospital visits, and resting on our couch. This picture is one of my favorites, because it captures the sweet angelic beauty of his face and skin. As we reflect on today, Mattie's one year anniversary, I selected this picture because it will always remind me of my little angel who died way too soon.
Poem of the day: Feelings By Joy Curnutt
I feel like I've just existed
And now it's been a year
I don't know how Ive lived and breathed
Without you being here.
I know you lived your lifetime
As short as that seems to me,
But the pain in my heart is still so great,
Yet I know your spirit is free.
At times I think I hear you
The thoughts come to my mind.
I struggle for the sound of your voice,
But your voice I cannot find.
Yet you come to me in many ways
So I know you did not die,
You want to tell me that you' re close,
And to please stop asking Why.
Our lives on earth seem all too brief,
Or brief as it seems to me.
But where you are is forever,
GOD calls that Eternity!
Peter and I had a very busy day! I am not sure what is better staying extremely busy or falling apart. But we selected the busy option for the day. We started our day off by receiving two very special gifts. The first gift was sent to us by a crucial member of Team Mattie. She is a very humble person and most likely doesn't want her name mentioned on the blog, but I want her to know that the cupcakes from Georgetown Cupcake brought a smile to our faces. Notice the butterflies, moon (FOR OUR MATTIE MOON), and stars on the frosting. I can't imagine a more fitting bunch of cupcakes in honor of Mattie! Thank you!!!!
The second gift we received was from Dr. Aziza Shad and her team at Georgetown University Hospital. We were deeply touched by the white roses. I love roses, and white signifies the purity and innocence of Mattie. I also learned today that it is National Pediatric Hematology/Oncology Nurses' Day. Katherine, Georgetown's nurse educator, wrote, "It seems fitting somehow that the national organization, APHON, chose this day to celebrate, I hope Mattie would approve! Serendipity, I suppose, that this day could be both a remembrance for one of our dearest patients and a celebration for the impact we make in the lives of patients and families. Your note of thanks is a powerful reminder of why we do what we do. I have forwarded the letter to all of the nurses and posted it in the break room."Mattie died at 7:15am on September 8, 2009. This morning, at 7:15am, my sister-in-law and her friend, Lesley saw an incredible rainbow. They said the sky turned black, there was an amazing storm, they lost power for a bit and then the rainbow. Seems rather magical considering the time of day!
This afternoon, Peter and I started packing up things to leave for Mattie's campus, where the tree gathering was located. By 3:30pm, we were at the school and setting up. We want to thank Tamra and Debbie today for providing waters and lemonades. We value this support and help. We also want to especially thank our friend Junko and her mom, Kazuko for creating over 40 origami praying cranes for today's event. I assure you this is a labor of love. Junko and her mom introduced us to this beautiful art form when they made Mattie two praying crane mobiles for him while he was in the hospital. In the Japanese culture the crane symbolizes honor, loyalty, a long life, and recovery from a major illness. Mattie and I loved his praying cranes and they came with us on each hospitalization. One mobile hung in Mattie's room, and the other on Mattie's IV pole. In fact, more people would stop us in the hospital hallways to ask about the cranes. This always made Mattie feel unique and cared about. So I couldn't think of a more meaningful way for the children today to acknowledge and remember Mattie than by placing an origami crane on Mattie's tree. This was a symbol of his friends' loyalty and their wish for him to have a happy life.
We want to thank all our friends from coming to support us today. You are a very special group of people to us. We would also like to thank Joan Holden (The Head of St. Stephen's and St. Agnes School), Bob Weiman (the head of the Lower School campus), Susan DeLaurentis (the director of guidance at the school), Debbie Pollak (Mattie's art teacher), Leslie Williams (Mattie's kindergarten teacher), and Becky Beran (3rd grade teacher) for coming to support us today!
Peter and I said a few words to a lovely crowd of our friends. Mind you we only let people know about the event on Monday, so we were very touched that people found a way to be with us today on such short notice!After we spoke, we helped the children place the origami cranes onto Mattie's tree. Our friend Margaret was kind enough to take pictures of us. Take note of how Junko and Kazuko brought the cranes to the event, on a hanger (which Peter is holding), which read, "We Love MATTIE!"
The children seemed to enjoy this activity so much, that they placed multiple cranes on the tree. An interesting fact about this tree...... Mattie's school counselor, Susan, was telling me today that in the last major storm that Alexandria had, many trees fell from the intense winds. In fact the mature tree near Mattie's lost a limb, fell on some wires and started a fire. This was feet from Mattie's tree. However, despite this ball of flames coming so close to Mattie's tree, Mattie's oak remained unharmed and strong!
In this picture Debbie (Mattie's art teacher) and the Magic Man (Bob Weiman, Mattie's head of the lower school) were selecting just the right spot on the tree to display their origami crane.
Margaret snapped a picture of Peter, Ann, and myself holding up the creative origami hanger which read, "We Love Mattie!"
My friend Mary Ann attended today's event. Mary Ann and I went to graduate school together and we haven't seen each other in a while, because her mom just lost her own battle with cancer. Mary Ann captured a picture of me with the Magic Man. What is touching about this picture is the way that Bob and I are standing and communicating with each other. I have a feeling this caught Mary Ann's heart as well, which is why she snapped the picture.
The colorful origami praying cranes blowing in the wind.
As many of my readers know, I have asked you to send me your thoughts and reflections about Mattie's battle, his loss, and the impact of the blog on your life. Over the past couple of days, I received over 50 very meaningful emails. I realize this makes for a very long posting, but each message means a great deal to Peter and I. It shows us that sharing our loss does matter, that people are hearing us, and in many cases we are making a difference. Thank you for your honesty and for renewing my energy to stay committed to the blog. In addition, I received three emails from women I never met, yet they are faithful readers. It means a great deal when I receive such messages, because I am inspired to hear that Mattie's story is so compelling and real that it captures the hearts and minds of those who do not even know us. I appreciate these women reaching out to me! I hope you enjoy all the postings below.
My mom wrote, "We have read the blog with heavy hearts. Yes these early days of September are filled with sadness and despair as we contemplate what Mattie suffered before he died. It makes us miserable to realize and accept how powerless we were in combating the vicious form of cancer that relentlessly consumed and destroyed our dear grandson before our eyes. The belief systems that usually sustain us through hard times were severely tested and our confidence in our abilities to protect those we love with thought, prayer and constant vigilance were forever shattered. When we were forced to stand by and witness Mattie's torturous and excruciatingly painful decline, one that we could not change, alter or prevent from happening, it was a bitter lesson about the fragility of life and a reminder that we can only live in the present moment and that there are no guarantees given to anyone about tomorrow. Mattie was only seven and we can be forgiven for assuming that he would have a long life ahead of him, a promising one at that. Wisdom comes from experience even dreadful ones and what Mattie has experienced we pray shall be the impetus for getting the funding for a cure for the childhood scourge of osteosarcoma that will put an end to the suffering for both afflicted children and their parents. Vicki and Peter are committed to achieving this goal and they are to be commended for their fervor in establishing The Mattie Miracle Cancer Foundation in hopes of making a cure for childhood bone cancer a reality. Saving Mattie Brown became the rallying cry for the friends of Vicki and Peter Brown and from coast to coast, it brought out angels and saints of all kinds in force who gave their all to make a difference between life and death. Their devotion speaks to the compassion and goodness of those who surrounded Mattie and his family with love and comfort throughout their ordeal. It was an outpouring of support in the face of crisis that was remarkable in its intensity and its sustainability. As grandparents who have witnessed your generosity of spirit and kindnesses in abundance, we wish to thank you all for all the smiles of happiness you brought to Mattie’s face during his long ordeal and the back-up help you gave to Vicki and Peter so that they did not have to travel that long difficult road alone. Even now, we reflect on the dynamic duo of Whitney and Lesley, childlife interns at Georgetown Hospital, who gave their all in befriending Mattie through his ups and downs never at a loss to find diversions to keep up his spirits when he was feeling low. They proved amazingly resourceful and ready to change gears in creating just the right games to engage his mind when he had regained his stamina and was ready for little boy fun, while always taking into consideration the limitations imposed by the surgeries on his limbs. They went over and beyond the call of duty and were always there to smile and cheer Mattie whenever the occasion called for it. He loved them and their support meant everything to him and to us as well. It came as no surprise then that Palen, Whitney's sister, as a leader of an organization of navy wives, sponsored his cause and lead the drive to raise money for The Mattie Miracle Cancer Foundation at an event her group is planning. What a wonderful tribute to Mattie and his family. It touches our hearts that our Mattie has not been forgotten! Thank you Palen!! In the end, even though we try to cope with our great loss by trying to be "normal" again so that most people would not suspect that we have anything to hide especially when we appear to be happy and content, it is only a facade. They do not "see" the pain of our loss that resides permanently in our hearts and that has annihilated any possibility of finding peace, The reality is that when you experience the unnatural death of a child that you love and adore it is impossible to ever be the same again!"
Ann wrote, "The Gift of Mattie.................................................................
Mattie was a force - he radiated energy and curiosity and tenacity - his mind worked so much quicker than mine! His ideas came in fits - his spirit could NOT be hampered - he was amazing, unique, powerful... and yet sensitive. Actually, his senses were heightened on every level - I think he heard and saw and felt MORE than any of us - he was ALWAYS ON!! He somehow knew he had to grasp the world fast and furious! He was a joy to watch and he experienced much joy - he lived in the moment and never took a minute for granted. Mattie was my friend - despite his young age - he was my counterpart - the sharing of ideas and thoughts was equal. He was truly an angel on earth - created for higher endeavors than my mind can comprehend. I remember going to see Mattie with my "bag of tricks" - hoping beyond hope to give Vicki even a ten minute break and engage my friend in some silly activity. On some level, he knew my game - but he really wanted his mom to stay - so he would try to engage both of us in the play!! He enjoyed our time together - and my "ideas" for our activity - but never, not once, did we follow my plan or even follow the directions on a given box!! He would meld two things together - so a volcano became a car wash and goldfish became a witches brew. His mind was beyond any one set of directions!! Clearly, his Lego skills demonstrate his ability to follow directions - but he always thought "outside the box". He was creative and imaginative - well beyond his years. Mattie Brown was a gift given to me - and to all of us - for too short a time. He was engaging, dynamic and deeply caring. He was more than a child - more than a friend - and this gift will never leave me. I think of him and miss him every day."
Our friend wrote, "Registration Day was quite difficult, as you might suspect. The timing is, of course, always a part of that. But, what struck me today, as I watched the much taller children who once comprised Mattie’s Kindergarten class, wasn’t just how much they have grown, but just how long your ordeal has been. Today, Mattie’s classmates entered the building for 3rd through 5th graders. When they entered Kindergarten, that building seemed like a world away -- a place they wouldn’t be for years. And, now, that day is here. It is always sad to know that Mattie isn’t with them, but it just quantified the length of time you have been battling cancer. First, diagnosis, then, the year plus battle, followed by the past year of mourning. A timeline that spans Kindergarten to Third Grade. On a happier note, it wasn’t all sadness. Mattie’s tree was shining, today. It stood so proudly and has grown so much, already. It definitely brought a smile to my face, and the children went over and visited it, which I thought was touching. I also noticed that his classmates still speak of him as though he is a part of their ranks. The kids were talking about which kids weren’t coming back to SSSAS, and it was as if they were gone forever. But, that really isn’t how Mattie’s classmates speak or think of him. I really feel they carry him with them. They don’t understand death the way grown-ups do, but they seem to get that Mattie didn’t leave voluntarily and so they treat him as though he’s still around."
Kristen, Mattie's oncologist and our friend, wrote, "My thoughts and prayers have been with you throughout this day. One year ago, on Tuesday, September 8th, I was sitting in the airport in Detroit about to get on the plane for DC. For some reason, I called the PICU for an update on Mattie. It was 7:16 am and the voice on the other end of the line told me that Mattie had just died. It is remarkable how fast an angel flies. I miss your little boy. I miss his spunk and his tenacity. I miss his sense of humor. I miss his courage. But most of all, I miss his reflection in your eyes and his acts love in your smile. You have been courageous and inspiring, You have been martyrs for your cause. I thank you tonight, for letting me into your world, letting me take care of your Mattie, letting me see a vision of true love, and letting my heart be touched by an angel. Thinking of you, Today and Always."
Charlie, my friend, wrote, "A full day yesterday on Tues, 51 weeks since Mattie left us. I am glad we found some poetry for todays' blog as I just cannot write today; I am overwhelmed by emotions. I think that although baking all those cupcakes was quite the project it was definitely a good one and as Karen said, very therapeutic. It is so like you and Peter to reach out to others in spite of your pain; I think the Legos for the hospital are an especially appropriate gift. I use them a lot when I do therapy with children and they encourage creativity and imagination even in the artistically impaired. I think the gathering at the tree will be lovely and very emotional and I will be thinking of you and Peter and all the Mattie Team folks who make it there today. I intend to observe my minute of silence at 4PM and I have already warned the school staff not to disturb me at that time tonight. I dedicate my practice to you today and I hope these efforts bring some healing to all. I hold you gently in my thoughts."
Joan, the head of St. Stephen's and St. Agnes School, wrote, "Our “Saint” Mattie’s creative and lively spirit still lives within each of us and within the halls of our school. How fortunate SSSSAS is to have the Brown family part of our school family. The tree in his memory is a reminder of the strength and courage Mattie demonstrated throughout his life."
Bob, the head of Mattie's lower school, wrote, "I have been thinking of you so much over the last several days. Even though Wednesday is the anniversary of Mattie’s death, it is, and will always be, connected to Registration Day in my mind. I remember visiting Mattie in your apartment during the spring with the My Weird School CD, hoping to get him excited about the book and, moreover, hoping that he would return to SSSAS in the fall. During the summer it was clear that Mattie would not be returning to SSSAS, and I will never forget receiving the word on the morning of Registration Day that he had passed away. The joy of the first day of school was mixed with deep sadness at the loss of Mattie. Life continues to be filled with reminders of Mattie- the Lego exhibit at the National Building Museum, any time I see creepy looking rubber bugs and other critters, when I ordered Mattie’s Peanut Booger and Jelly trick for this year’s 5th graders, whenever I am near Georgetown Hospital, when I pass by Mattie’s tree. I am so glad that Mattie’s tree is a place for you and Peter to visit and remember Mattie. I did notice that the bird feeder was up really high when I walked nearby today, but I couldn’t see the chimes from where I was! I look forward to hearing the chimes often- what a beautiful reminder of a special boy."
Tricia, one of Mattie's outstanding HEM/ONC nurses, wrote, "Though it is fast approaching the one year anniversary of Mattie's untimely passing, I still find it very difficult to deal with the loss of someone that I came to love and care for very much. I know in my profession, I am supposed to be able to handle the loss of life and continue to offer loving care and support to my patients and their families, but the impact of losing Mattie has and still does continue to weigh heavily on my heart. I follow along with the blog several times a week. I am and always have been truly inspired by the tremendous love and family dynamics that made Mattie who he was. It has always been very plain to see he was an extension of both of you.
My family has been forever blessed for having known the three of you and we will always treasure the gift of being able to share in your journey both then and now. It is truly energizing to have followed along as your vision has unfolded into The Mattie Miracle Cancer Foundation. It takes more than just special people to make that vision a reality... along with all your community support, of which we are proud to be a part of in memory of our precious Mattie. I was at work recently and was giving a prize to one of the patients and it had a picture of Mattie on it and all of a sudden a flood of emotions overcame me and I had to remove myself from the situation quickly to gather myself again. This was both a joyous and sad moment for me, remembering both the special, happy times I was caring for Mattie and those last painstaking yet precious moments we all spent together. Those are times I will never forget, and I will never forget the time Mattie wheeled by the PICU secretary's desk and said, "I LOVE YOU TRISH," or the time he told me I wasn't his mother, therefore I could not tell him what to do.... or the BUGS and TRICKS he loved to play on us all. My children and I often share our Mattie memories and discuss the multifaceted talents that he shared with us and everyone around him. His artistic creations and LEGO buildings were always a sight to behold. Mattie has undoubtedly left his legacy with us here and I am sure he continues to brighten the days of everyone fortunate enough to share in his new life. I can still see his angelic face sleeping on his pillow when I cared for him and will always find peace and comfort with the sun shining and the beam of every moon. Every time I hear the song "Neon Moon" by Brooks and Dunn I'll think of Mattie Moon. With Heartfelt Memories."
Kathleen, one of Mattie's outstanding HEM/ONC nurses, wrote, "I am sure today is a day that marks a year of confusion, anger, and hurt. I wish that you will find love and support from Pete and all your family and friends. I can't believe it has already been a whole year... I find it only fitting that today of all days is national pediatric hematology/oncology nurses day. What a way to remember my little monkey boy! It is because of families like yours, and children like Mattie, that I am a pediatric oncology nurse. Every day I am reminded of why I do what I do from looking at the charm you gave all the nurses for Christmas. I wear it on my badge so I am reminded to instill hope and love in each and every one of my patients. I think of you both often and hope that you are both doing well. Please know that I am thinking of you both today, and that you are both in my prayers."
Lesley, a friend of my sister-in-law's, wrote, "I just wanted to let you know that I am thinking of precious Mattie today. He will never be forgotten and he has made such a profound impact on my life and countless others. I know today will present you with numerous emotional challenges, but know that Mattie is remembered and loved. Thinking of you both."
Meg, one of Mattie's favorite childlife interns, wrote, "Dear Mattie, It has been nearly two years since I had the pleasure of meeting you. From the moment I met you I knew that I was going to make it my goal to get you to at least smile at me. From that first day I knew that there was something about you. You were like a magnet and I couldn't stay away. You radiated warmth and love and all the things that made me want to work with children. There was an innocence about you, even though cancer was raging through you. At first I tried being super sweet to you and trying to befriend you from a warm and fuzzy standpoint. I quickly found out that this was not the way to approach you! The next time I saw you I acted like myself, full of sarcasm and awkwardness, and for some reason it made you smile. Your smile is a smile that is so warm it could melt the coldest heart. That day with you was the best day I had while I lived in DC. Everytime I came to work I hoped that I would get to hang out with you. You possessed this wisdom and knowledge about life and people that was both unique and far beyond your few years. What I appreciated most about you, dear Mattie, was the way you treated people. You treated people in a noncalous and realistic way. If there was something that bothered you then it was voiced. If you didn't appreciate how someone was speaking to you then you told them so. And that is something that I will always respect about you, and strive to do. I treasure the night that I got to stay late and play with you. We made a fort in your hospital room, on the floor of course, and watched Curious George. You made me share a pillow with you because you liked the way my hair smelled and felt. As we watched the movie we laughed and cuddled. And all I just kept thinking was how lucky I am to have you in my life at that moment. I was dealing with an influx of personal issues and you some how honed in on this and made me forget about all my troubles. You allowed me to act like a child and share in your innocence. I guess you are a lot like your mom in that respect. In her blogs she always says that she helps herself by helping others, and that is clearly what you did. You wanted to make others happy, even when you were having a bad day. Over the last year, I have read how your mom and dad have absorbed their life without your physical presence. It has been the most spiritual, gut wrenching and realistic perspective that I have ever encountered. The strength your parents possess is shown in everything they do. It is because of them that you were so strong and sharp witted. The love they have for you is a passion that I can only strive for. I miss you my good friend. I think about you everyday. My Willow Tree Hope statue sits on my desk at work where I can glance at it and be reminded of all my fond memories of you."
Laura, one of Mattie's childlife interns, wrote, "Yesterday I went to check on an 8-yr old boy who was going to have an ultrasound. Ultrasounds are as we know, non-invasive procedures, this child has cancer and has smiled in the face of many procedures. Yesterday his smile was as present as ever, and this child just kept talking and talking and talking. Even though he knew what an ultrasound entails, this was not typical in his schedule before his chemo and that change made him nervous, and telling me about his recent Lego projects was his coping mechanism. It was hard to get a word in edgewise, but I told him that at another hospital where I was, there was a boy about his age, who loved Legos too, and even built what he wanted his hospital room to look like out of Legos. This boy replied, "Woah!" I did not know Mattie for very long and in comparison to many, I didn't know him very well, but I remember him as inventive, funny, social, and a great advocate for himself. The first time I met him was Martin Luther King Jr. Day 2009, and Mattie was signing for his own treatment. At first he did not want to sign, but Vicki, you explained to him what it meant to write his name, and he understood and took the pen and agreed to treatment, and then went back to racing an electric car he'd built with Peter (and the hot glue gun). Linda was off that day but left a whole basket of things to do with Mattie's name on it in the office, so at first I'd started by bringing him the items gradually. Clearly I didn't know Mattie yet, but then I realized how much energy and excitement he put into each detail but how quickly he could do it, and realized, "Wow I need to be bringing him the whole basket. He's going to do all these projects before Linda gets back tomorrow, and we'll have to come up with some new ones." One time Mattie and I took a giant box, and he built a school, and then he wanted to build a pool at the school. I told Mattie that I was also a lifeguard and he made a pretend person and kept telling me that I had to save him, and then wanted me to give swim lessons to his person. So I was lying on the playroom floor, role modeling "swimming" for his guy who kept letting go of the wall and needing to be saved. He was laughing! And every time I saved the person, he just kept jumping back in until he learned to swim. Even in Mattie's pretend play, the people he made up mastered every situation. When they struggled, like when they jumped in and needed assistance or when he had people walk the plank in the pirate ship, it was hilarious to him, but they learned to swim and escaped the alligators at the bottom of the plank so that they could be forced to walk the plank again. Mattie facilitated his stories and directing others as to their roles. Such a leader! I read your prior blog posts occasionally and especially enjoy the pictures of Mattie. Also, I hope that Brandon is doing well. He was such a good buddy to Mattie. Although I am well aware each person goes through their own journey when their child has cancer, thank you for taking the world along yours, and helping everyone including myself better understand and be able to help children and families. All three of you are in my thoughts."
Toni, Brandon's mom and our friend, wrote, "One of my fondest memories of Mattie was during Brandon's birthday at the clinic and we were all celebrating. Mattie and Brandon were sitting at the craft table making boats to race in the sink. Mattie was so excited!! They took the boats to the sink. Mattie was still in his wheelchair. He got up out of the chair to put his boat in the sink and said "I can't believe I'm racing against my BEST FRIEND!" It was just the way he said it and laughed. I could tell that he really loved Brandon and Brandon felt the same way about Mattie. I'm so happy that we still remain in each others lives. Their isn't a day that goes by that we don't think about Mattie or you and Peter."
Ariel, a former student of mine, wrote, "I'm so sorry it's been so long since I've written. Even though I haven't written in a while, you, Peter and Mattie have never been far from my thoughts. You have especially been in my mind as the first anniversary of Mattie's death approaches. I wanted to remind you how Mattie has impacted my life and let you know that he continues to do so. As you know I began an RN/NP program at Columbia in June. Although I've known for some time that I wanted to become a Pediatric Nurse Practitioner, Mattie' story and the blog is what inspired me to specialize in pediatric oncology. The first year of my program is accelerated (60 credits in 12 months) and the first 2 months that I completed in august is referred to as boot camp (20 credits in 2 months). I have never experienced anything like those 2 months...it was beyond intense with many classes and exams every 2 weeks. At times I didn't know how I could make it through. However, thinking about Mattie always inspired me to keep going and reminded me why I am doing this and what my ultimate goal is. I wanted you to know that I continue to think of Mattie and his courageous fight every day and I will never forget him. I also wanted to let you know that in school we have talked about the importance of being advocates for our patients...I had already learned about this through you and Peter. You were the best possible advocates for Mattie and you have made me want to advocate for all of my patients (which I have begun doing in my clinical rotations as a student nurse!). Please know that you, Peter and Mattie will be in my thoughts on September 8th and everyday."
Lana, one of Mattie's first preschool teachers, wrote, "You've both been on my mind (and in my heart) this last week as this sad anniversary looms ahead. I've been trying to sort through all these feelings I have to share so here goes... First, the recent post about Carolyn taking Gavin and Ellie to the pool instead of all the things she thought she "should" have doing. As my children are launching into adulthood, I see the young families I work with at RCC and sometimes finding myself saying "Slow down, trust me, they grow sooo fast!". On Team Mattie, we have all learned this lesson on another awful level. As parents, you two already knew this....you slowed down to enjoy your wonderful son, and when this awful illness came into your lives, you knew him so well, that advocating for him, soothing him, loving him was already a part of who you were as parents. I know that many parents who read the blog regularly, who have shared this horrible journey, have come away with lessons from your experience....yet just one more gift from Mattie! The other theme I think of with Mattie is what a small world it is! Of course, I know the RCC members of Team Mattie, but I am continually amazed with other connections I make. First, as Mattie went off to SSSAS for Kindergarten, my next door neighbor, the dear Liliana was in his classroom and I believe at one time, proclaimed her desire to marry him! Another friend knew Mattie's story because she goes to church with Julie Frye. The donation that came in from Keali'i Reichel in Hawaii because my close friend's daughter was studying hula with him on Maui and shared your story. The most surprising story is of course, that Whitney's sister, Palen's, husband (have I got that right?) is in the same Navy squadron as my son! Now, I have a new one too! My husband, tiring of being the Executive Banquet chef in a busy DC hotel, went looking for new job this summer. Well, guess where he ended up, a mile and a half from our home....at SSSAS, as the Ass't Food Director!! He came home from a welcome reception for the teachers talking about meeting 2 who had worked at Punahou School in Hawaii. (This school is just down the road from where he grew up.) He mentioned that one was the art teacher, and I said "She's the one who worked with Mattie on his sun painting!" (Ms. Pollack also knows some of our "Hawaii" friends!) As the school year opens, I told him he'll be meeting many more people who have connections to Mattie. As I prepare for my new class at RCC this week, I have a wonderful little girl who's sign will be the "moon". I think this is the first student I have given that sign to since Mattie. I hope she loves it the way Mattie did....I know he will be on my mind daily as I draw it many times! You're in my thoughts and prayers."
Margaret, Mattie's first preschool teacher and our friend, wrote, "As evening approaches tomorrow looms large on my horizon; my thoughts and prayers go out to both of you. It has been a harrowing year. When the day dawns tomorrow my memories of Mattie Moon will continue to fill my heart and soul. Know that the journey continues for so many...you are not alone. I've attached a few of my favorite photos taken when Mattie was in my Pretend Room. May they bring a smile or two to your faces and a ray of sunlight into your hearts. Peace and love to you both."
Carolyn, our friend, wrote, "I don’t know what to say to you today – I am never good at expressing my feelings with words – but I do want you to know how much I am thinking of you today – and how much I owe Mattie for bringing you and Peter into my life. I am so grateful for the friendship we have developed – and for all that you and Peter have taught me through your struggle. And, although I wish so strongly that there was a way to bring Mattie back to you - I do know that he lives in many of our hearts and always will."
Nicole, one of Peter's colleagues, wrote, "I wanted to let you know that I am thinking of you as you approach this somber milestone. While I never met Mattie, his story, your unending support, and the hope of what you can accomplish with the foundation is certainly inspiring. I wish you a peaceful day remembering the good times with Mattie."
Colleen, a friend of mine from graduate school, wrote, "I just wanted to let you know that I am thinking of you and Peter as you approach a very unhappy anniversary tomorrow. I hope tomorrow's celebration at Mattie's school can bring you a small sense of peace. Please know that I think of you often and you are both in my prayers."
Audrey, a friend of mine from college, wrote, "I am just writing to let you know that I am thinking of you. You asked for people to write to you about what your blog and what you have been through has affected us. It has been an interesting year and half for me. I have watched three people I care about dealing with the loss of a loved one. I refer to my mom losing her mother(my grandmother) and to you and Pete losing your son. It has been interesting because you are all feeling grief and dealing with it differently. My mom feels she shouldn't still be crying over her mother and I keep telling her it is okay, it takes time-I am not sure how long it would take me to get over losing her. And then there is you and Peter, sharing everything-amazingly still touching people and helping them to understand. I have asked my mom to read your blog to help her, but she can't it is too hard for her. But from me reading you, I can help her by listening to what you say. You and Peter are two of the strongest people I know. I know I have said it before but it is still true and should be stated whenever possible. I hope this week does as well as it can. I want to thank you for sharing your life for the last couple of years no matter how hard it has been. You, Peter and especially Mattie have touched a humongous number of people. I don't know why this happened, but I do know that you have handled it with amazing grace. Just know I will be thinking of you this week more than ever and sending you all the strength I can to get through it."
Carey, Lauren's (the middle schooler who created the successful Bows for Hope project) mom, wrote, "I am thinking of both you and Peter today and the hell you went through last year at this time. Although my family never met Mattie, he did have a profound effect on our life. With both Mattie and Lauren going through treatment at the same time, I remember that it was nice to have someone to compare notes with. Mattie's foundation lives on in our lives with Lauren's bow project. I always think of your Mattie when my Matthew wears the Mattie Foundation shirt. Mattie will always be in our memories."
Junko, our friend, wrote, "I think of Mattie every time my children (especially Kazu, whose physique and personality remind me so much of Mattie) surprise me by showing how in depth they actually understand and grasp the outside world from what they hear and perceive. One notable memory of Mattie is when I visited him in the hospital right before his first chemotherapy started. I shared some gifts Kazu picked out for Mattie, and we spoke for a while. When it was time for me to leave, the nurse was already working on his vitals and putting some medicine in through IV. During that time, he called out to Vicki, to make sure that she did not forget giving me a parking sticker for the Georgetown Hospital. I could not stop crying on my way home, not just because of what was happening to him, but was so touched by Mattie's ability to look out for others under any situation. Kazu still talks about Mattie - in fact, he was telling his cousins about Mattie yesterday, as we were discussing how Kazu only knew Mattie before he entered kindergarten (in the context of Bethie entering kindergarten this year). Tad and I are both thinking of you in this very difficult time, which include for the last two years and two months, and at the same time, we feel so privileged to be your friends. We pray for you and Mattie."
Denise, my friend and colleague, wrote, "As I have followed the blog since Mattie was diagnosed with cancer, I have been in awe of the strength, hope, courage and the bravery of Mattie, Peter and you. Throughout this year, I have been in awe of how courageous both you and Peter have been in allowing yourselves to remain open and accepting of continued connections and support from other people; family, friends, medical professionals, and all of those who you have touched in your journey. I came across a quote from Anne Morrow Lindbergh: “It isn’t for the moment that you are struck that you need courage, but for the long uphill climb back to sanity and faith and security.” You have also allowed yourselves to be open and accepting of the connections with nature that have become to symbolize your on-going, transforming connection with Mattie. Through your writings on the blog about your grief, we have learned about your process of grief and allowing yourself to connect to your patient heart, rather than rushing through the process with a sense of urgency and frustration. We have all hoped that we have supported you both gently in our thoughts and hearts as you experience this transformative process of grief. Thank you, my friend and colleague for sharing your generous spirit and family’s journey with so many of us. I will think of Mattie every time I see a butterfly and will send a healing thought your way. With love and friendship."
Mattie first became part of the Block Room at Summer Camp after his Pretend Room year. He was a little hesitant leaving the Pretend Room but he quickly realized that we did what he liked!!!! Who can forget how much he enjoyed outside in the sprinkler and the WET sandbox! The plant that he gave me after summer camp is still blooming in my kitchen window. We had such a great Block Room Year... I remember very fondly the Thanksgiving Feast Day that Both of you attended... And Mattie and Peter did what they did best.. Building with the Quadros -big structures and involving all the children. I remember telling you what a "Master" builder Mattie was....I guess you all knew that. I also remember Mattie using the Quadros to build a pirate ship......We built the Mast and then he spent days making the sails and then we made pirate hats, spy glasses, etc... He was always ready to get messy in any science experiment that I could come up with- Volcanos, goop, gak, instant snow...just give him a test tube some baking soda and some vinegar and he would be happy for the all of Activity Time! I was so happy that we had a snow day that the children could go sledding down the hill on the trays.....And he loved it when I told him that my family had hidden snow balls in the freezer to throw at me on the 4th of July but we fooled them and I brought them in for camp! He embraced my holidays.......Ground Hog Day, and of course St. Patrick's Day. I still have the pin that he gave me from Clydes and the Leprechaun that he sent me when he was in kindergarten. Mattie bought 100 animals for his day 100 collection (of course) and I always sigh when I see the picture of Mattie when he was the curator of the museum on your web site....I don't remember everything but I do remember how he was so proud of his laughing Elmo that he shared with everyone. After the article that was written in the Post my son called me and said that he knew that that was "my Mattie" because he recognized my handwriting when he looked at the picture of all Mattie's art work. (Mattie Magnet). I don't know what else to say but I think of you often. You all are always in my thoughts and prayers. Peace to you both."
Julia, our preschool friend, wrote, "Tomorrow is the 1st Memorial Day for Mattie. It seems like it was a long time ago and like it was yesterday, both at the same time. I still can't mention you and Mattie without telling a whole story about his diagnosis, the effects on your family, the blog... I guess I'm still processing my experience of that year. I did want to tell you that your blog was my first "blog experience", and it really changed my ideas of how to handle illness, trauma, etc. I grew up in a family that kept difficulties to ourselves. During the years that my dad was sick, having transplant surgery, then dying, I barely talked to anyone about it. My job (as a therapist - yikes) had no idea until I asked for time off for his funeral. Now I see that sharing the experience, talking about it, accepting help are all good things that could have helped me through that really bad time.Your writings in the blog also helped me focus on what is really important to me. My family is thankfully healthy and happy. I see that simple things like being able to have dinner together or build legos (!) together can't be taken for granted. I'm not sure this would be so clear to me if I'd only known that Mattie had died. I might have moved too quickly from shock to sadness to acceptance without experiencing this shift. Thank you for writing every day no matter what. Hugs to you both. We are thinking of you."
Leslie, my friend and college roommate, wrote, "Just wanted to let you know that we are thinking of you and Pete during this difficult week. Since Mattie passed away on Michael's birthday, we will forever think of all of you on September 8th. I have been reading your blog everyday and have read about your butterfly encounters and your desire to attract more to your front deck area. I'm not sure if you have every come up this way and gone to the Wings of Fancy butterfly exhibit at Brookside Gardens in Wheaton. You walk into this greenhouse building and you are surrounded by butterflies from all over the world. It is beautiful and fascinating. Here is the website http://www.montgomeryparks.org/brookside/wings_of_fancy.shtm if you want to check it out. The exhibit is only here through 9/19. But, will reopen in May. If you have time next week and would like to journey up this way I would love to meet you at Brookside to see the exhibit. I realize this is a difficult time, and it may not be possible. So, I completely understand."
Honey, my friend and colleague, wrote, "I start each day by reading and internalizing Mattie's blog. I have been enormously affected by these heartfelt reflections. You and Peter are fantasticl parents and human beings who have experienced a most devastating loss, which makes your unselfish support and your tireless advocacy work for others related to Osteosarcoma and Pediatric Cancers every more remarkable. I know that Mattie is saying Ooga Booga and couldn't be prouder of his remarkable and loving parents."
Dave, SSSAS' head football coach and our friend, wrote, "I just wanted to let you know that I was thinking about you and Peter. I just got back from spending some time at Mattie’s tree. It is a beautiful tree and the bird house and wind chime make it even more special. I know that this is such a difficult time, it has been nothing but a difficult time for the past two years. I am still in awe as to how you and Peter and Mattie handled the whole ordeal. I hold the three of you in the highest regard and you have been a huge source of inspiration in my life. I think of Mattie all the time, my wristband never comes off and I wear his t-shirt under my coaching shirt when we take the field to play our games. I know that he is in a better place where he can run and smile and be free of pain, but I still miss him and his smile. I know this, I am a better person having known Mattie Brown and his mom and dad. I will not be able to be with you this afternoon, I so wish I could be, but Evelyn will be there. Please know that my heart will be with both you and Peter and that I plan on spending a lot of time under Mattie’s tree. My very best thoughts and wishes."
Jocelyn, Mattie's big buddy at the hospital, wrote, "I am sitting in class as I write this and honestly had been so wrapped up in the start of this year that for a moment I almost let the day go unnoticed. Just a couple weeks ago I took Maya out for a day at Color Me Mine and we were talking about how much we miss Mattie and how how special he was to us both. At the moment it hit me that the special little boy who created the moment between Maya and I was Mattie. We met and bonded because of your amazing son. He is alive and well at the core of our relationship with one another. To me this is just one little way that Mattie lives on in us all and I just wanted to share that with you today."
Erica, Peter's colleague, wrote, "You and Mattie remain in my thoughts and I often visit your blog. Though I didn't have the privilege of knowing Mattie personally, the way Mattie lived and your family's courage have changed the way that I live my life. You and Mattie have taught me to value moments I might otherwise take for granted. I have loved your connection with Mattie and butterflies. I have lived here almost my whole life and have never seen so many butterflies - they are even all over the beach! I have begun using them as a reminder that each moment is precious. To be honest, this is especially helpful because I am not always the calmest person and I too often find myself losing patience or getting wrapped up in trivial stresses. The butterflies have been a constant reminder to me of how precious the moment I'm in is. I will continue to look for butterflies and other reminders of the miracle that is your Mattie.
P.S. I meant to email you an interesting thing that happened on your birthday, Vicki. We missed the march because my husband had surgery that week and you kindly mailed us our shirts. We put the shirt in my son's room, but he had not worn it yet. On the morning of your birthday, I was moving particularly slowly. He took it upon himself to get dressed and ran into my room wearing his Mattie Miracle t-shirt.and wore it proudly all over Northern Virginia."
Jessica, my former student, wrote, "I never knew Mattie Brown personally. I knew his mom's love for him, her stories, and her pain. Vicki was my professor at GW as I pursued my master's degree in counseling. Though I didn't know Mattie, the stories of him had an enormous impact on me as a young therapist. They exposed me to an area of counseling - of pain - that I have always been fearful to process, experience, and feel: death and loss. Aging and death are core issues I struggle to make sense of, like many people, and I always thought, "I could never deal with these issues as a therapist; I could never do grief work." But something about Vicki's stories on the MattieBear Blog - her honesty and transparency about all the ups and downs - changed me. I wasn't so afraid anymore to face death and loss, and this past spring, I co-lead a grief group for high school students who had experienced loss. I know instinctively that knowing Mattie and his story prepared me for the group, to co-lead it and share in it. And I loved it. I loved helping people with their grief; co-leading the group was one of the most rewarding experiences of my life. Through the experience, I met an LCPC Pastoral Counselor who I will continue to work with and possibly continue to co-lead grief groups with. And through co-leading these groups, I am able to be more comfortable with my own issues with death and loss, which are unresolved, and I'm sure never will be resolved. But they will be more manageable to deal with. So thanks Mattie, for being such an awesome son that your mom glowed about you in class and shared your life with the world. You changed my life."
Denise, my friend and colleague, wrote, "I've spent most of the day...shoot, most of the week...attempting to find the words to write to you. What does one say to someone who has lost a part of her heart? Her soul? Her spirit? A spirit that was embodied in a little boy that was so vibrant and full of life, and now is gone. There are no words. I've been reading the blog, and the entries you've re-posted from last year, and I still find myself staring at the monitor through rivers of tears. Reading about your life is difficult enough, I have no clue how you actually lived it. I wasn't sure about sending you an e-mail to include with other memories of Mattie since I never actually had a chance to meet him. Everything I know about Mattie is through your eyes. Your words. And yet, I still feel a special connection to him (and you, of course). Maybe it was because we were pregnant around the same time, but his spirit "speaks" to me. I don't mean that literally, of course, but it's true, nonetheless. It was that connection that told me I needed to get on a plane to attend his Celebration of Life ceremony last October. Witnessing everything Mattie had accomplished, and all the lives he had so profoundly touched in a mere 7 years was an awesome gift to me. The friend with whom I stayed after the ceremony asked me, "How can such a young kid have had such an effect on so many people?" In retrospect, I can undoubtedly say that *that* was (and continues to be) the miracle of Mattie. My heart and my thoughts are with you today, as always. And my prayer for you and Peter remains unchanged...that one day the memories you have of Mattie will bring forth smiles and not tears."
Laura wrote, "We do not know each other but as I read your blog, with your openness, honesty, bravery, and pain laid bare, I often feel as if I do. I would like to express my deep sorrow for the loss of your beautiful son Mattie. There are many days when I read your blog and stare at the gorgeous pictures of Mattie and you and his friends and find it incomprehensible that such an amazing being no longer inhabits our world. And of course the unfairness of the reality of his death and the pain of his last year of life spurs great anger. While I cannot begin to know what you go through on a daily basis outside of what you so graciously share with your friends, supporters and readers, I have sadly had a close glimpse into the world you inhabit. In fact, it is somewhat ironic that I came across the article about Mattie's Miracle Cancer Foundation in the Washington Post just weeks before my 16 year old nephew died of Ewing's Sarcoma on August 10, 2010. He too, was treated and Georgetown Hospital (for over five years) and as I read your blog I am certain there were times when Mattie was there when he was also. I say ironic, but I of course I was drawn to Mattie's story and your blog because I obviously felt a connection. In a short time, I read your blog in it's entirety, although not necessarily in chronological order. As my nephew's impending death approached, I felt the need to read your blog entries about Mattie's death as a way to understand what my nephew and his parents (and the rest of us) might experience when the inevitable actually happened. As I read your latest entries and again read your entries from this week last year, I understand too well the denial you experienced. I think up until the hour that my nephew died, some part of me didn't believe it could actually happen. There was always hope. But then it did happen, and all of us who loved him are left to figure out how to live on without him. So I have also pored over your entries that have described the year since Mattie's passing, again hoping to gain a greater understanding and anticipate what my sister-in-law and brother-in-law might go through as the months go on and how we can help them in any small way. So I thank you for the gift that your eloquent Mattie's blog has been to me and my family as we have embarked upon this most unwanted journey into grief. I understand that everyone experiences grief in their own way but your honesty about your experiences and your emotions has come to me at a time when it was most needed. Some nights as I read your blog I feel what I can only describe as comfort in knowing that others have had a similar experience and have similar feelings about it, although I would never wish such understanding on anyone. I don't believe for a minute that you can ever "get over" the loss of a child and frankly, I don't know that you should or that it is something to even strive for. For someone to suggest (as you recently experienced) that you should is simply cruel and ignorant. If I have learned anything from my nephew's death, it is to try to love more and judge less. It has also opened my eyes to the shocking disparity in research for pediatric cancer drugs. While this is appalling, it is certainly a motivation to help change that and to strive to wipe out these cancers. I am awed by your strength and dedication to create Mattie's foundation and look forward to joining your walk next year and supporting it. Although I never knew, him, I can assure you that I will never forget Mattie and his smile, his sense of humor, his artistic abilities, and his love of bugs and all things outdoors. Please know that Mattie (and you both!) continues to reach and inspire others and that through your blog you have ensured that his memory will live on forever. Thank you for sharing your lives. I wish you moments of rest and times of comfort."
Liz wrote, "Thank you for offering up the opportunity for your readers to write in, forcing me to put down in words the feelings I have experienced reading your blog over the last nine months. I have never met you and was never able to meet Mattie, but was told about your blog through a close friend in the St. S. community. Your writings have truly changed my outlook on life and I'm incredibly grateful for the time you take to share your story with your readers. Your outlook and perspective on life are to be emulated, and not because you lost a truly amazing son, but because you appreciate the truly important things in life and choose to openly express your opinions and thoughts every day. I'm amazed by your strength and ability to put the most difficult year of your life into such meaningful writing. I have been through two difficult surgeries over the past year, with more to come, and feel so thankful that I can draw such inspiration in living day to day through your blog. I'm truly amazed by the strength and courage of your son, but your story and strength has really been my inspiration. Thank you from the bottom of my heart for sharing it with us all. A devoted reader."
Ann wrote, "We have never actually met but I have been reading your blog for a year now. I am good friends with the Bentsen's. I actually used to babysit Meredith and Louise. I learned of Mattie and his struggle with Osteosarcoma through them. After his passing I found your blog and began to read and haven't been able to stop. I actually can't believe it has been a whole year that I have been reading the blog (as I am sure you can't believe it has been a whole year since he has passed). My heart goes out to you and Peter and to your families. I can't imagine the pain that you feel. I wanted to let you know that you are an inspiration to me. Your writings help me put things in my own life in perspective. I have two small children - 21 months and 3 months and when I feel frustrated or overwhelmed I have your blog to help me remember how much I love them and appreciate them and try to never take anything for granted. Reading your blog each day reminds me how much I have to be thankful for. I sure you much rather have Mattie then have the blog but I wanted to let you know what you do and have to say does make a difference and is impacting people. So thank you and thank you Mattie. I wish I had the opportunity to meet him - he sounds like he was an amazing child! I am SO, SO sorry for your loss and will be thinking and praying for you today and every other day that I read the blog."
Katie, our friend and Zachary's mom, wrote "We’re all thinking of you and Mattie today on the anniversary of his passing. Zachary and I will be at St Stephens and St Agnes this afternoon to share some Mattie memories with you, including some videos that we found. I’ve also attached our Mattie tribute from last year’s memorial service. We know that this will be an especially hard day for you both, but hope that today’s event will be a testament to the impact that you and Mattie have had on all of us. I’m Katie Magnuson, and I’m honored to be sharing our family’s memories for Mattie’s Celebration of Life. Our family is currently in Maine, closing up our summer house for the season. We flew up on Thursday and, as we were taxing on the runway at National Airport, my son Zachary became excited: “We’re going to see Mattie’s house! Let’s wave.” “Yes,” I answered, “We’ll probably see Mattie’s apartment from the air.” “No, Mom, I meant his new house,” and he pointed upward. “Above the clouds.” We both smiled. And, as the plane ascended above the clouds, we both waved to Mattie. Zachary and Mattie had a very special friendship. They met in Margaret and Lana’s class at Resurrection Children’s Center, and they were fast friends from the very first day of school. The boys shared the same interests – trains, legos, art projects, Scooby Doo – and spent lots of time together both in and out of school. Preschool afternoons were often spent playing outside at RCC or eating pizza and running around at our house. Chasing games were a favorite. Whether it was Vicki chasing the boys and pretending to be “pinchy” (Diesel 10 from Thomas the Tank Engine) or Mr Bear, or Mattie and Zachary pretending to be meat-eating dinosaurs and chasing the plant-eaters (Vicki and Sara, our nanny), Mattie and Zachary couldn’t get enough. There was a lot of chasing and LOT of giggling. Mattie and Zachary also enjoyed getting into mischief together. One of their favorite pastimes was planning elaborate traps to ensnare Zachary’s older sister, Alexandra. These were often inspired by cartoons and usually involved hoisting buckets of water up above Alexandra’s bedroom door and attaching a string to her doorknob. I’m not sure if the traps ever succeeded, but the boys sure had fun building them. It was particularly entertaining eavesdropping on Mattie and Zachary’s conversations. The two would often observe the younger children on the playground at RCC and comment to one another: “Can you believe we used to do that when we were 3?” and “Do you remember way back when we were 3?” These were, of course, ruminations of much more “mature” 4 year olds. One day, Mattie was saying to Zachary how he wished he had an older sibling. Zachary, in his generosity, offered up his older sister Alexandra: “You can borrow her if you want.” The true mark of their friendship was that they stuck by one another through thick and thin. Once, after school at RCC, the boys were playing on the playground and Sara offered to go to Wendy’s for some lunch. Sara asked Vicki if she could watch Zachary while she was gone, to which Mattie replied, “Don’t worry, I’ll watch him for you.” Last Halloween, Mattie came trick-or-treating with us in our neighborhood. This was shortly after Mattie had his arm surgery. He was dressed as a mummy and, not only was his costume very realistic, but his arm was actually wrapped up under his costume. This made the trick-or-treating rounds a little slower. At one point, the kids in our neighborhood got a little excited and ran ahead -- but Zachary stayed behind with Mattie. When urged by the other kids to catch up, Zachary made it very clear that Mattie was much more important than a little extra candy. Our family has many happy memories of get-togethers with Mattie, Vicki and Peter: trips to Chuck E Cheese’s, the Kite Festival on the Mall, the Day Out With Thomas in Strasburg, PA, and a 4th of July boat outing on the Potomac to see the fireworks. Mattie was always thrilled to be with his buddy, Zachary, but also proud to share these moments with his parents, Vicki and Peter. I particularly remember one morning at RCC when Peter brought a coconut to school. He wanted to show the kids what the coconut was made of, so he spent the better part of an hour sawing and drilling and ripping the different layers off that coconut. The kids, of course, were thrilled to watch all of this unfold, and Mattie was so proud that this was his dad who was making the magic happen. After RCC, Mattie and Zachary went to different schools. They didn’t get the chance to see each other every day, but we often met up at “The Pit” near St Stephens & St Agnes to play. And it was like they’d never been apart. Mattie and Zachary remained devoted friends throughout Mattie’s illness and hospitalizations. I remember one evening last Fall when Zachary and I brought dinner to the Browns. Before our visit, I had shown Zachary photos of Mattie on the blog – so that he wouldn’t be surprised when he saw Mattie with no hair. As we pulled up to the Browns’ apartment building, Zachary was having second thoughts about a visit. But, as soon as we met up with Mattie and Peter in the lobby, Zachary realized that this was the same Mattie after all, hair or no hair. Since learning the news of Mattie’s passing, Zachary has talked about Mattie almost daily. There have been lot of questions – What will Mattie look like in heaven? Will he recognize me when I go to heaven (especially if I’m old)? Do you think he’s watching us right now? – but there haven’t been tears. Instead, Zachary is reminded of Mattie every day -- when he looks at photos of the two of them in his room or the drum-playing Santa that Mattie gave Zachary for Christmas 3 years ago (and which is still sitting on Zachary’s dresser) or when we pass by a place that we used to go together. To this day, Zachary considers Mattie his best friend. And, I think this will be true for many years to come."
Sue, our friend, wrote, "Thinking of you both and wishing that Mattie were still alive. Mattie's death and your courage to continue his legacy has taught me to truly appreciate each day as a gift. To not put off to another time: a chance to get together with a friend, make a new friend or play with my kids. Time will always continue forward and there is no going back to re-do a day. Your journey has highlighted the resilience of the human body/spirit/mind."
Bunny, Rev. Beales' sister, wrote, "What a courageous little boy Mattie was – and how brave are his parents. I think of him often and I know that he is whole and running around in heaven. Thanks for sharing Mattie with us."
Melissa, my friend and colleague, wrote, "On this, the eve of Mattie's passing I am and have been at a loss for words. I've been thinking of you often. I could sense the anniversary coming even without reading the blog regularly amidst the seasonal memories I have for me that accompanied your painful journey of loss--the end of summer, getting ready for and starting school, and my girls' birthdays. As I go through these things this year I feel an echo of Mattie and of you--your voice and his presence and spirit through the blog. I remember taking steps of hope and faith and fear with you, as I also attempted to engage in my own life in a more real and profound way. All I can say is Mattie and you have forever changed me. As I read your blog tonight and view the gorgeous cupcakes you so lovingly made in his memory to be shared and enjoyed at his tree tomorrow, I am simply overcome. You see, I take great joy in crafting home-made cakes for my girls' birthdays each year according to their chosen theme. My girls' birthdays are August 23 and Sept 7th and between each girl having a family party, a celebration at school, and a "friend" party and a joint extended family party, I find myself baking ALOT of cake in a span of 3 weeks. At times, part of me wishes I could consolidate the celebrations so as to not have to bake and decorate so much, OR let go of doing it myself and just buy something. But, it truly is a joy for me and a ritual and a tradition and now more than ever I acknowledge what a precious gift they are to me and how long I have with them is not known and not guaranteed. I continue on with this perhaps seemingly silly or strangely old-fashioned and sometimes even over the top gesture because I love to love on my girls. Funny thing is, my husband used to have a hard time understanding why I do this as it takes a lot of time and energy....but this year, he's been infused with a new spirit of appreciation (a friend of his lost a child as well) and has taken great joy in my creations and in my way of expressing love. He's decided he's going to come up with a theme for his next birthday, so I'll make him a fun cake this year too. I look at your cupcakes and I grieve deeply for you once again--how I wish you could be making those cupcakes for Mattie to enjoy with you. I feel guilt and confusion once again over the why's. And yet I also feel deeply connected to you once again as well, and encouraged by your spirit once again as well. I'd like to think that if I had to endure the loss of my child, I would, like you, still find a way to bake for my child despite and through the pain. And yet, imagining that is overwhelming-- and seeing you do it is even more overwhelming and incredibly encouraging as a result. Love to you and Peter this September 8th. May you continue to draw strength from those whom God has placed in your life to bring you hope and encouragement as you continue to try to find a way."
Susan, my friend and colleague, wrote, "Greetings from the heartland of America! I know I haven't written for a long time, but I do want to let you know that I have read each and every blog entry that has been written since the inception of the blog! It has been thought-provoking, mesmerizing, exceptionally sad, and life-altering for this reader. I see things differently now, even though I have been a helping professional for over thirty years, and have worked with death and dying for that length of time, I now have increased knowledge and sensitivity toward my patients because of your blog entries and shared experiences. A few weeks ago you mentioned hummingbirds in your blog, and it caught my attention. We are blessed with over 20 hummingbirds that feed at our windows each day. We have suction-cup feeders on the windows so we can literally be within inches of these amazing birds. We fill all four feeders at least twice a day! They are hungry little creatures! It has occurred to me that there may be similarities between these birds and Mattie's short life. They, too, die in their youth, usually after 3-4 years, after they have brought much pleasure to those nearby (Mattie accomplished this). They are very entertaining (and we can certainly say that about Mattie), they are small but show amazing strength (Mattie showed us strength every day he fought for his life), they are tenacious, (Mattie didn't give up easily either), they are resilient (although perhaps he was an "old soul", Mattie remained child-like in his playing and creative times - I love seeing pictures of his creations), and they endure adverse situations (the last year of Mattie's life was full of adversity). These small and beautiful birds fly great distances - non-stop across the Gulf of Mexico every year. Mattie has left us also, flown away perhaps, but one thing is for sure, we know that Mattie will always come back to us in our thoughts and memories, and will reside permanently in our hearts. Thank you, Vicki and Peter, for your own resilience and determination to include friends and acquaintances in your journey of the past two years. Although I never met Mattie, I feel like I know him through the blog and the incredibly descriptive pictures you have posted of him. (I am SO glad you loved taking pictures of him). The blog has most likely been a labor of love for you, and from the bottom of my heart, I thank you. I feel richer for the blog experience, and have certainly felt privileged to read about your own journey toward a life without your son's physical presence. But he will always be with you, as he will be remembered by many of the blog readers as well. I still have a picture of his "Super Mattie" blanket I made for him right beside my computer. His journey will not be forgotten, he will not be forgotten. I wish you peace. P.S. Will you still be writing the blog?"
Nancy, my friend and colleague, wrote, "I am so grateful that you decided to create the blog. It made the distance between our worlds shorter in so many ways. It has been a way to support Peter and you from beginning to end and a gift where each of us could work out our feelings about Mattie's death too. Thank you for sharing your unique family with the world."
SWINGING TOGETHER by Nancy Heller Moskowitz
We did many things together, each and every year,
These are the memories that I hold so dear.
I found a group of pictures, ones I hadn't known,
All showing what life was like with you and me alone.
This latest one, us riding on a swing,
Sings a song as people watch us fling
Our feet in the air.
As you sat upon my lap,
With tubes, bubbles rising, a cast
These images couldn't keep us from the way,
We came together on that very, special day.
Our cheeks touched, a gentle smile
Upon both our faces.It was a mixed blessing, that day in the sun,
For we were not able to run,
Like other times.
Yet, our love will always last.
OOGA BOOGA, My Mattie Moon
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