Sunday, October 11, 2009

Sunday, October 11, 2009

Tonight's picture features Mattie sitting in front of his Super Mattie quilt that a colleague of mine handcrafted for him. Mattie loved this quilt, as did we! It captured Mattie's spirit and boldness. Though Mattie is no longer physically with us, his spiritual presence is always amongst us. Mattie will always be my Super Mattie.

Poem of the day: You're Still Here by Richard Lepinsky

At the finest level of my being.
You're still with me.
We still look at each other,
at that level beyond sight.
We talk and laugh with each other,
in a place beyond words,
We still touch each other,
in a level beyond touch.
We share time together in a place,
where time stands still.
We are still together,
on a level called Love.
But I cry alone for you,
in a place called Reality.


Mattie's funeral and celebration of life reception were very powerful and meaningful events. Though the events lasted from 3pm until 9pm, these six hours flew by for us. Over the course of the next few days, I will try to capture moments from the events as well as share speeches with you that Mattie supporters shared with us. The words expressed truly touched me, and Peter and I loved hearing stories about our Mattie through the lens of his family, friends, doctors, and nurses. We hope you enjoy these captured memories as well.

There were at least 400 people in attendance at the funeral and the reception. It was quite a send off for Mattie, and it really illustrated to me how his battle with cancer united our communities! The funeral began with a tribute from Dr. Aziza Shad, the director of the Pediatric Lombardi Cancer Center. Dr. Shad was the attending physician on call the week that Mattie died, and she handled Mattie's palliative care superbly! We couldn't have asked for a more competent and compassionate doctor to be by our side. Dr. Shad understands cancer all too well, but I learned she also understands the complexity of dying. You would think this is commonplace for most physicians, but I can assure you, it isn't! Physicians heal and cure, not prepare patients to die. Dr. Shad can do both equally well. Following Dr. Shad's tribute, Dr. Kristen Snyder, Mattie's oncologist spoke. I am very fond of Kristen as a professional and a person. Kristen got Mattie! She appreciated him for his intelligence, creativity, and spunk. Kristen's tribute was deeply moving and touching to me and I have asked her to share it with me electronically, in hopes that you may read it for yourself. Following Kristen, was Joan Holden. Joan is the head of St. Stephen's/St. Agnes School. Joan shared with the attendees her perspective of Mattie as a student and a member of the Saints community. She describes Mattie as a number one Saint. I concur, and I also agree, he will always be a Saint to us. Our last tribute came from Kim Messinger. Kim is the director of Resurrection Children's Center (RCC), Mattie's preschool. Kim gave a touching and very meaningful tribute to Mattie and my family. RCC was a turning point in Mattie's social learning experience, and we will always have a special place in our heart for this very special school, with its very special administrators and teachers. At the end of these tributes, Peter and I delivered a eulogy for Mattie. I copied the eulogy below for all of you to read.



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Mattie's Eulogy:



Delivered by Peter: Mattie was only seven years old, and yet he was captivating. His spirit was contagious, and his love for life and people was bold and yet tender and compassionate at the same time. In fact, to know Mattie was to love him! We have been reflecting long and hard on what we were going to say to you today. In fact, after a year of writing each and every day on Mattie’s blog, you would think saying a few words would actually be easy for us. But it isn’t! It isn’t because we really do not know how to say good-bye to someone, who for the past seven years, has profoundly defined our world, our identity, and gave us incredible direction, purpose, and meaning.

With any important date in history, we sometimes pause on that particular day, remember and reflect. For us, September 8, will always be a day of remembrance, and Vicki and I shall never forget Mattie’s courageous fight against Osteosarcoma. It was a fight that was almost superhuman. After all, he survived 11 months of chemotherapy, two limb-salvaging surgeries, and a sternotomy. These treatments wreaked havoc on Mattie’s mind and body. Mattie’s aggressive form of osteosarcoma forced him to experience things that even an adult would have trouble rationalizing, accepting, and coming to peace with. However, during his entire battle Mattie never whined or complained about what was happening to him. Sure, he wasn’t happy that he had cancer, but he lived each day, and he freely accepted and trusted Vicki and I to make educated medical decisions about his treatment. His trust and love in us, always left us speechless, yet it instilled a fire within us to only advocate harder and stronger for his recovery. Of course having Linda, Jenny, Jessie, Anna, Jey, Brandon, Jocelyn and all his wonderful oncology nurses by side helped tremendously and in essence they enabled the hospital to be a second home for us.

I always felt that Mattie, Vicki, and I had a strong and ever lasting bond, but under times of crisis you learn a great deal about an individual’s inner character. Mattie had an inner strength that we were and will always be in awe of. Cancer is a crisis, and yet despite that, Mattie played through it, he created beautiful works of art (several of which you will see at the reception), he laughed, and he made new friends. But here’s the thing. Despite all he was going through, in the end, he was the one who gave us the greatest gift. The gift is ever present and is with us in this church today. Mattie united his communities, he united people. For over 13 months, you all have prayed for us, delivered meals and gifts to us DAILY, and in the midst of this chaos, we have developed friendships whose depths are so meaningful that they are almost indescribable in the English language. We shall never forget the day that Mattie died. Within an hour after his death, Mattie’s room was flooded with Georgetown University Hospital doctors, nurses, and other wonderful support staff showing an outpouring of love for Mattie and my family. We mention this because within a year’s time Mattie knew just about everyone at the hospital, and Vicki and I could see that Mattie won the hearts of all those who cared for him.

Being Mattie’s parents was an honor, a privilege, but also a challenge. Many people described Mattie as an “Old Soul,” mainly because he was wise beyond his years, and seemed to have a good understanding of people and his environment and operated in them like an adult. Mattie had so many strengths, a few of which we would like to highlight such as his sense of humor, his observational skills, his ability to understand how things work, his level of empathy for others, and his vivacious and veracious need to have fun and to convince others to participate in this fun.
Vicki and I learned about Mattie’s sense of humor early on. In fact, one night when Mattie was 3 months old, Vicki and he were sitting together playing with a toy. He started to make a wheezing sound that scared Vicki to death, because she thought he was having trouble breathing. Naturally she called Mattie’s pediatrician and interrogated her for minutes! When I came home from work, we deduced that the wheezing sound wasn’t a breathing problem after all, in fact, it was just Mattie laughing. From that point on, we realized we had quite a character on my hands, a character who as he grew up loved hearing about this wheezing story. Mattie’s sense of humor came out in full force at the hospital this year. In fact, humor was one of the positive coping mechanisms that helped Mattie through his battle with osteosarcoma. Certainly if humor did not help him, it helped those of us providing for his care. Mattie was notorious for scaring nurses and doctors with plastic toy bugs. He had toy roaches climbing on the walls in his room, tarantulas crawling down the hallways, and slimy and gooey substances in strategic places throughout his hospital room. Mattie inspired his nurses to be silly too and in many ways he allowed them the comfort and security they needed so that they could relate to him on a very human level. For example, one morning Kathleen, one of Mattie’s fabulous oncology nurses, decided to put a slimy gak like substance in her pocket. Why? Because Mattie’s left leg, which is better known to those of us, thanks to Dr. Bob, as “George,” had a way of getting into his nurses’ pockets. This was one talented leg, that could literally pick up anything and maneuver it in the most unique positions. When Mattie put George into Kathleen’s pocket, he got quite a gooey surprise, and we all laughed incredibly hard that day! Another example, is with Tricia, a wonderful oncology nurse of Mattie’s. Mattie observed one day that a fly was in his room. Literally Tricia ran around the room trying to catch the fly. She was really hamming it up and as usual she did not disappoint. She caught the fly between her two fingers, and then pretended to eat it. It was those silly moments that Mattie inspired in all of us, and a part of me truly believes that he brought a whole new life and world into the PICU, one that was never or will ever be seen again. He made a serious place seem happy and fun, which truly is a feat for a pediatric intensive care unit.

Delivered by Vicki: The second strength of Mattie’s was his observational skills and his ability to understand how things work. Most toddlers like to play with toys. However, Mattie was a bit different. His favorite thing to do was to play with actual tools, like a screwdriver, which he used to disassemble and reassemble his hotwheel cars. It was a sight to see, and at times I just did not get it, but as he aged I learned that he had an analytical and mechanically inclined brain, which I came to love and appreciate. In fact, one funny story at the hospital this year involved his walker, which he used in his physical therapy sessions. One afternoon, Anna, Mattie’s physical therapist, and I were struggling trying to get his walker open. We must have been a sight to see, because neither of us could open up this piece of equipment, and believe me we were trying pretty hard. Mattie was getting very impatient with us, and was directing us from his wheelchair. At first I wasn’t listening, but then Anna and I stopped and heard what he was saying, and guess what? From his wheelchair he guided us on the correct way to open up the walker. After that, Anna and I were both pretty much humbled from that experience. As for his observational skills, they were stellar. One afternoon, Mattie was admitted to the hospital with a high fever and not feeling well from his chemotherapy infusion. Katie, another fabulous oncology nurse, came to take Mattie’s vitals and to admit him to the floor. Even in Mattie’s stupor, he looked down at the floor and observed Katie’s shoes, which were shinny red and clearly brand new. Mattie told Katie that he liked her shoes, and from that day on, Mattie called Katie, Dorothy, like from the Wizard of Oz. I think Katie’s heart melted on that day, because in all reality how many seven year old boys observe shoes of all things?

The third strength of Mattie’s was his ability to empathetize with others. My most recent example involved a visit I wanted to make to Ann’s dad in his assisted living facility. Mattie understood that Ann was out of town with her family, and yet she was worried about her dad because he was quite ill. As I explained the situation to Mattie, he connected the dots without me having to say anything. He basically said, “what are you waiting for, he needs your help and you better get to it.” Mattie did not want Ann to worry about her dad, and he understood that when you are sick, you definitely want someone by your side advocating and caring for you. I still remember this dialogue we had as if it were yesterday, and despite Mattie being ill himself, he could freely step outside his situation and care about others.

The final strength I would like to highlight is Mattie’s ability to have fun and how contagious his energy was to those around him. The best example I can give you is how Mattie transformed his physical therapy sessions with Anna. Mattie pulled in Linda, Jenny, Jessie, Brandon, Denise, Meg, and the childlife interns into his sessions. In fact, the whole PICU floor was transformed by Mattie’s physical therapy. We would attempt to get Mattie to walk, race, and move his body, but not in a simple or routine manner. Oh no, that wouldn’t be Mattie’s style. Instead, Mattie did therapy to ABBA music, and literally we would be blasting music and singing throughout the floor. It almost seemed like we added more people into our therapy sessions as we migrated around the hallways. It was an amazing experience, and I can assure you I will never listen to ABBA music the same way now. I am forever changed, just hearing Dancing Queen, brings me back to the PICU instantaneously!

Mattie also taught us a whole new language. The language of Methotrexate, Doxorubicin, Cisplatin, MTP-PE, Ifosfamide, Etoposide, Kytril and Vistaril! These are chemotherapies and medications I won’t forget any time soon, however, it is my hope that even if these words fade into the distance for you, that the hateful word, Osteosarcoma, will be something you will NEVER forget. EVER! Which is why Peter and I are passionate about establishing the Mattie Miracle Cancer Foundation. Osteosarcoma is an orphan disease that is under researched, underfunded, and simply not on the radarscope of most of the medical community.

Mattie’s battle with cancer and death must have a purpose and meaning, because in my opinion seven year olds are not supposed to die or die in such a painful way. These are memories that Peter and I are forced to deal with each day, these will be our demons that we have to live with for the rest of our lives.

To me, Mattie’s greatest gift, which he accomplished in 7 short years, is that he has reaffirmed life for us. He has taught ALL of us here today about the beauty of community, about love, commitment, and the power of trust. Through Mattie, I have learned more about myself and the depths of those around me. We want to sincerely thank Team Mattie. What an incredible group of people you are, we would have been lost without your support. We would also like to especially thank Ann, our Angel of Hope and Team Mattie coordinator, and Alison, our Team Mattie Fund coordinator and communications director. These women not only inspire me, but they provided me with HOPE when there was none to be had.

In closing, I am sure Mattie is looking down on us today and I can almost hear him saying, in true Mattie fashion, Ooga Booga, which means I love you. Mattie we love you, we miss you deeply, from your magical smile to your twinkling eyes, we think of you always, and you are simply irreplaceable. No matter where you are, always know that your Una Moon loves her Mooshi Moo forever and always, and Daddy will miss his best buddy, his Mattie Bear.
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Father Jim Greenfield, the same priest who gave Peter and I pre-cana before our marriage and also baptized Mattie, presided over Mattie's funeral. Jim is a very talented and gifted priest and orator. We are fortunate that he was able to celebrate this mass with us, and to help us try to say good-bye to Mattie's physical presence in our lives. Jim delivered a beautiful homily and I know that many of you were moved by the mass, and I appreciate you sharing that input with me. Sometimes in my numb state, I do miss important moments. In fact, I am open to all your e-mails, mainly because we all take in and experience things differently, which is why I welcome your impressions of the day.

I will continue to share more tomorrow, but I did want to tell you about a dream that Peter had last night. I am sad to report that being back home, I am back to my PICU sleeping schedule. I am working very hard at breaking this unhealthy cycle, but it isn't easy after surviving over a year of INTENSE stress. Peter told me that he had his first dream about Mattie last night. However, in all reality it was more of nightmare, rather than a dream. He told this dream to my parents and I today, and we all came to the same conclusion. In the dream, Peter sees Mattie floating by on a boat. Peter is also on the water, but in a different boat as he is observing Mattie. There are many other boats around Mattie's, but Mattie is having fun and doesn't appear to have a care in the world. However, the scene changes quickly and a wave captures Mattie's boat and sends his boat smacking into a dock. As this is happening, other boats are slamming into Mattie's boat, because of the waves. Peter is observing that Mattie and his boat are being sucked under water. With that, in Peter's dream, he jumps from his boat into the water to try to save Mattie. Peter dives under water, but after a valiant attempt, is unable to save Mattie...................

This is quite a dream, no? Does it remind you of something? Maybe the 13 month battle we had in trying to save Mattie, NOT from a wave of course, but from Osteosarcoma. The dream captures Mattie's happy times before cancer (ie, floating by on the water without a care in the world), and then the dream brings us up to present times, as illustrated by drowning, with the inability to save Mattie from dying. It seems to me as we were listening to the dream today, that Peter's mind is trying to make sense out of the last year, he is replaying Mattie's cancer battle, with different scenery (boats and water), but the story line is the same. I have yet to have a dream about Mattie, and I am not sure what that means, but I do find it fascinating how the mind processes crises and traumas.

It is also interesting to me that in the quiet and more mundane tasks of daily life, is when I find I am most bothered and upset. I spent a lot of time today snapping at my parents and Peter. Snapping for no reason really, just snapping, and I found myself disengaging from conversation. In addition, as I landed up doing laundry today, I also couldn't help but reflect that in the piles of things I am cleaning, there are NO little person clothes. It is these small yet huge revelations that Mattie's death does hit me. Peter and my Dad also collected all the art work that was on display yesterday at Mattie's celebration reception and brought it back to our home today. I had art of Mattie's everywhere, and because I still have a HUGE clean up task ahead of me from 13 months of house neglect, I have no where to put these objects. For a very organized person like myself, this is a very unsettling and upsetting predicament. But I took a deep breath, and I realized I will get to the chaos when I am ready, and I am clearly am not ready yet.

I would like to end tonight's posting with six messages. The first message is from my friend, Charlie. Charlie wrote, "Vicki, I think that yesterday's combined services were all you could have hoped they would be. I loved Mattie's artwork and I heard so manycomments about Mattie's creative side. I gravitated back to his paintings of the sun several times and could feel the emotional warmth radiateevery time I stood in front of them. What a wonderful gift. The children and their balloon release were very special and I am sure that theopportunity to participate meant a lot to all of them; it was wonderful of you to find a special way for them to participate in the services. Mattie's video-well, that just leaves me without words. I was sitting next to my husband, who is pretty sturdy and who supports me when I get a little over the topand I saw him trying to wipe away the tears as he listened to the music and watched the pictures come up on screen. It was almost too much to bear.The touching and revealing comments of those who spoke, especially of his grandparents who shared his life in a way that only grandparents can connectwas both sad and inspirational. Truly, Vicki and Peter, this was an amazing effort that anyone who came for even part of it will never forget. For today,I wish you some time to sit and reflect on what you accomplished in the past year and some peace knowing that no one could have done more."

The second message is from a fellow SSSAS parent and friend. Debbie wrote, "The funeral and the reception to honor Mattie's life were beautiful. What a tribute to your precious son! I am not sure that I am able to say this in a way that makes sense, but as I reflect on the afternoon, I am in awe of the experience. The words spoken were spiritual, earthy, funny, angry, reflective. The music soared, from the beauty of the the violin to the sweet voices of KW to Abba! The food was simply, elegantly scrumptious. The children loved the goings-on in the children's room. The photographs of Mattie were gorgeous and his artwork took my breath away. The love and caring of Mattie's community were palpable. The depth of the love of you and Peter for your son was apparent in every detail of the day.We broke away from Visitation after the video tribute and headed out with cookies in the children's pockets and Mattie seed packets to plant in our garden. As we drove home across the bridge into Virginia, the sun had set and the sky was dark with lovely, deep magenta streaks. Though that is not a detail that you probably anticipated, it was a lovely benediction.My prayer for you and Peter this evening is for restful sleep, knowing that this day was a true celebration of Mattie Brown's life."

The third message is from a former student of mine. Tess wrote, "I was so disappointed that I was unable to make it to yesterday's ceremony - from reading the blog every day I could tell you and many others were working tirelessly to make it an incredible event. I'm so glad that it turned out as beautifully as you had imagined and that so many people who love Mattie and you and Peter could share his legacy in such a special way. I was thinking of you all day yesterday, and think of you often everyday. The profound depth of your grief is hard to bear even as an outsider, and I wish the fact that so many other people are hurting for you could take some of the burden off your heart. You are so brave to continue on each day, even knowing that no day will bring the comfort that you need- that would be having Mattie back again. I went to the blogs of the other two girls who died a couple of days ago, and while I was touched and saddened, I had to remark that your blog is truly something incredible - so full of description and feeling, even if you don't think you have any feeling left. It's really a work of art and heart to read, and reveals the incredible love you had as a family, and your dedication to making Mattie remembered in the world. I can add my voice to those who have promised Mattie will never be forgotten. This experience, even for those like me, has been unparalleled, and so moving, in the most heart wrenching ways. Holding you up in loving prayers, Vicki. You should feel so proud of yourself - you are, and will remain, an EXTRAORDINARY mother."

The fourth message is from a former student of mine who drove from NY to attend Mattie's funeral. Ariel wrote, "I know you already know this, but I wanted to tell you how beautiful everything was yesterday. I am so glad that I was able to come and help celebrate Mattie's life. Your's and Peter's eulogy was beautiful. As many others have told you already, I can assure you that Mattie will never be forgotten. In fact after yesterdays reception and ceremony, I now have many more mays to remember him. It was wonderful to see all of his artwork in person and the photo albums that you put together were beautiful. I couldn't believe that some of that artwork was done by a 7 year old! The montage was also beautiful and you couldn't have picked more perfect songs to go along with the pictures. (I know I have used the word beautiful many times in this email, but it is really the only word I can think of to describe everything). I had the privelege and pleasure to meet and chat with Erin, one of Mattie's wonderful hem/onc nurses. I am also glad I got to hear some of the instrumental people in Mattie's life speak about the impact he had on their lives. I was upset that I couldn't stay for the entire ceremony, but unfortunately I had to drive back to NY last night. On my drive home all I could do was think about Mattie and reflect on everything at the reception and ceremony. At one point, I was on the phone with my mom and describing the events of the funeral and reception/ceremony. When I told her about the long list of people who spoke at the reception, she said "wow, it is unbelievable how this little boy really touched so many lives." She is absolutely correct and I am positive that Mattie touched more lives in his short 7 years than most adults do in their lifeitme. While driving home, I couldn't help but also think how unfair this all is. Being at the funeral and reception made everything so much more real for me and when I got home I was snapping at my mom. She kept telling me that I was being rude to her for no reason. I was just so sad and angry and clearly couldn't control these emotions I was feeling. I am looking forward to being able to donate to the Mattie Miracle Cancer Foundation once it is up and running. If there is any way I can help with anything, please let me know. I would love to be able to help you with the foundation in any way possible. You, Peter, and of course Mattie, will continue to always be in my thoughts."

The fifth message is from a colleague of Peter's. Nicole wrote, "I just wanted to let you know what a lovely service it was yesterday. Just a further acknowledgement of what loving and dedicated parents you are. I also wanted to let you know that as I was driving home, I saw a bit of a rainbow peeking out from the clouds. I truly believe in signs, and I took this as Mattie smiling down. He was definitely watching yesterday and knows how many people cared about him and will miss him."


The final message is from Mattie's art teacher, a major Mattie supporter. Debbie wrote, "You have given us all lovely memories to keep in our minds by sharing all the photos of Mattie. I believe that the whole day yesterday was a magnificent tribute to your precious Mattie. I was so honored to be able to help display his artwork and the incredible photo posters that Luda produced. I hope you got to see everything before you left last night. I read the story about the ball in the kitchen. It was a sign from Mattie. He will show you signs at the oddest of times and in many different ways. Just keep alert and they will come. He wants you to know he is still the playful little fellow you knew and love, hence the ball bouncing. I loved Mattie with all my heart. I only wish we could have painted many more times. I am grateful we had the opportunity we did. I am lucky that you gave him to me for all the hours it took for us to create "Mr. Sun." I am sitting in the Piazza right now and making the plan for the Mattie garden which will be installed next to my Mom's garden. Mattie's spirit fills my studio just as if he was really physically here."

THE GIFT THAT KEEPS ON GIVING (a poem for Mattie's grandparents!)
By: Deborah Sue Pollak

God gave the gift of Mattie to you, Vicki and Peter.
You shared your gift with me.
I shared my gift of being an artist with Mattie.
Mattie shared his gift as a painter with all of us.
Now I give these posters to each of your parents as a gift.
My hope is that every time your parents look at the poster,
they will smile.
Once again, a gift from Mattie to them.