The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
October 17, 2009
Tonight's picture was actually taken by Mattie. I gave Mattie the camera while Dr. Bob was removing his leg cast. I always loved Mattie's creativity, and I particularly admired this photo. Mattie was able to capture the intensity of Bob's concentration, focus, and steady handedness. After all, Mattie had a camera pointed right at Bob, with the flash going off, and yet Bob never flinched throughout the process. The picture also gives us the perspective of what things looked like from Mattie's point of view while getting his cast removed.
Poem of the day: I Need To Be Heard by Leslie Delp
I need to be heard....
Please don't tell me how you feel!
I need to be heard...
Please don't try to comfort me by telling me "You'll be better in time."
I need to be heard...
Please don't pacify me by trying to "top it"with a hurt of your own.
I need to be heard...
Please don't look away when I mention that precious name.
I need to be heard...
Can't there be anger among sadness and misery?
I need to be heard....
Meet me where I am, and listen to me....
Until I don't need to be heard anymore.
I began my day by watching the Mattie Tribute video we created with Mary, Mattie's technology teacher. This video captures Mattie's life beautifully, and it also featured songs in the video that meant something to Mattie. A lot of thought and love went into this video, and I can't thank Mary enough for giving me this gift. Whenever I get lonely, I can turn to this video and remember my Mattie. After watching the video, I reflected on Mattie's life, and I began to realize, as I expressed to Peter, that I can't remember Mattie walking and most of all I can't remember when Mattie was healthy. All I remember is the sick Mattie, the traumatized Mattie, and the dying Mattie. These images will take some time for me to process and come to terms with, which from my assessment makes the grieving process for me more complicated and difficult. Not only do I eventually have to deal with grief, but I am dealing with traumatic grief. From my perspective, I have to feel somewhat safe in order to be able to process such a loss, yet after experiencing Mattie's cancer for 13 months, repeated crises, living in a PICU without much sleep, and his horrific death, I have learned that nothing about life is safe or guaranteed. I don't say this lightly, but I can assure you I have seen more things in one year than most people see in a lifetime. I am not touting this fact, on the contrary, I don't wish this nightmare on any one of you. However, unlike a nightmare, I can't wake up from it, this is my daily existence.
It is an uncertain existence, and an existence that makes no sense to me, and therefore I am left to feel so insecure that it is hard to feel safe enough to explore my own emotions. This revelation came to me tonight. I also came to the conclusion that a part of me feels guilty to have survived Mattie, this is not how things are supposed to happen in life. Children are expected to outlive their parents, which in my perspective only further compounds my trauma.
Peter and I met with Peter Keefe (a fellow SSSAS parent and now our friend) and a lawyer today to finalize the paperwork for The Mattie Miracle Cancer Foundation. I naturally do not have a business or law background, nonetheless, I feel like I am learning a lot from this process, and I found today's meeting very helpful. The lawyer Peter Keefe connected us with is simply human and incredibly knowledgeable. Not to mention supportive of our endeavor. Despite my own tumultuous feelings about Mattie's death, I do feel like we are making significant progress on the Foundation front. However, it became very clear to me from the meeting that many foundations that are set up each year, however the majority fold and are not successful. I made a mental note of this comment throughout the meeting. In a way this comment reminded me of my graduate school days. I distinctly remember sitting in a predissertation writing class, and the professor turned to all of us on the first day of class and said, "take a good look around you. The majority of you in this classroom will NEVER complete your degree, in fact maybe only 20% of you in the room will get a PhD." I still remember this sickening feeling I had in my stomach when I heard this pronouncement! I did not like hearing this, but what the professor was stating was a fact, since only 2% of people in the United States actually obtain a doctorate degree. Okay, so why am I telling you this story? Because for some reason, when I heard about the success or lack there of with foundations today, I got the same sickening feeling I did in graduate school. The same feelings of self doubt, concern, and disillusionment resurfaced. Clearly we know how the graduate schooling worked out for me, but I must admit I was a different person then. I was determined, younger, and not beaten down by the worst thing that could possibly happen in my life. So in the process of dealing with trauma and grief, I now know I need to start building up my confidence to attack this foundation endeavor. With all that said, we can't thank Peter Keefe enough for all he is doing for us. His guidance, patience, and support are invaluable to us.
Peter and I had the opportunity to have dinner with Ann and her family tonight. Bob's brother and sister-in-law are visiting, so we had the chance to get to know them and to also connect with Tanja and her family. I am working very hard at connecting with the outside world, yet in a way I feel as if I live in a parallel universe. My body is present, but because of what I have experienced with Mattie, my brain and heart seem to be in a different location. It is a hard feeling to describe. At dinner we also talked about Mattie, and hearing about Mattie is actually a very good thing for me. I love hearing about how others experienced him, how they felt about him, and how they continue to remember him. In fact, Ann shared with me a story about her daughter, Abigail tonight. As many of you know Abigail and Mattie were buddies and attended the same preschool and kindergarten class. Today Abigail went bowling with her siblings and some friends. Abigail picked out a particular bowling ball (yellow in color) and told Ann that she wanted to name the ball, "Sunshine." Why sunshine? Because she told Ann that Sunshine reminded her of Mattie. You may recall that Mattie received a lovely stuffed toy albino snake from his osteo buddy Jocelyn, which she gave to Mattie in remembrance of his 7th birthday party. In any case, this bowling ball was "special" and "lucky" to Abigail today, and she truly did not want to part with this ball. If others tried to use it to bowl, she got upset, and of course there could be many explanations for her being upset, but the one that seems to make the most sense to me is that Abigail in her own way is grieving for Mattie. I also find it fascinating that Abigail is now playing with Legos. Not something she typically played with prior to Mattie's death. Hearing this from Ann today gave me great pause. I was not only touched by Abigail's connection to Mattie, but I was taken aback by the sensitivity and the depths of grief experienced by a 7 year old.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Yesterday was such a grey, sad day and I can just imagine Peter walking about on Roosevelt Island. Finding the one citrus fruit must have been a bit like finding a little sunshine in all of that and I would like to think that's how Mattie would have seen it. I listened to Ann's tribute in person on Saturday but I am glad you printed it in the blog; I missed parts of it because I was crying. How much better our world would be if we lived as Mattie lived,"caring deeply, with details, friends, family and life" taking priority. Take a space of time today to feel just how much many of us care about you, Peter and Mattie and how we each honor him in our own ways."
The second message is from a fellow SSSAS mom. Ann's daughter, Claire and Mattie were in the same kindergarten class in 2007. Ann wrote, "I have been thinking of you on this dreary day. Hope you're hanging in there. I also can't stop thinking about the service and celebration of life for Mattie last weekend - so thoughtfully planned and beautifully executed. Every element simply shone with the love you, Peter, and so many others have for Mattie. After listening to all the speeches, observing his wonderful works of art and looking through all the photo albums, I feel like I really got to know Mattie. I also wanted you to know that your careful attention to the needs of the children made it a very therapeutic event for Claire. She had been coping with her sadness and confusion by refusing to talk about Mattie. Participating in the celebration shifted the focus to an emotion she is much more comfortable with - the joy of having known him. You are very generous to have thought about their needs."
October 15, 2009
Tonight's picture features Mattie at the Georgetown University Hospital's ribbon cutting ceremony for the Childlife Playroom. Mattie LOVED this playroom and spent many hours in it playing, interacting with others, and he even celebrated his 7th birthday in it. It is hard to believe that in August 2008, the hospital did not have a playroom for the children. This playroom was such a needed and welcomed addition to the PICU floor! In the picture, you can see that Mattie was very honored to be asked by Linda to cut the ribbon to the playroom door. Mattie was photographed by the hospital and was invited to the opening celebration party! A day I will never forget.
Poem of the day: Grieving Time, A Time for Love by Barbara Bergen
If a loved one has departed,
And left an empty space,
Seek the inner stillness,
Set a slower pace.
Take time to remember,
Allow yourself to cry,
Acknowledge your emotions,
Let sadness pass on by.
Then center in the oneness,
Remember...God is here,
Death is but a change in form,
Your loved one is still near.
Treat yourself with kindness,
Allow yourself to feel,
God will do the mending,
And time will help you heal.
My parents headed back to Los Angeles today. To help with this transition, I met up with Ann and we spent some time together talking and having lunch. I filled her in about Mattie's Foundation and then had an opportunity to talk with her about how I am feeling. Feelings are NOT something I handle very well these days. I am very aware of the fact that when people evaluate me from an external perspective, I appear intact, together, and well adjusted to Mattie's death. I am very cognizant of the fact that we live in a world where we usually judge a book by its cover. However, things are NOT always what they appear, and just like you wouldn't determine if a book is worth reading or not from its jacket cover, the same analogy goes for me. Do not be deceived by my exterior presentation. Because if you scratch the surface of my perceived together exterior, you will find that inside is a person who is confused, disillusioned, perplexed, angry, sad, at times hopeless, but mostly you will see a mom who greatly misses her son and struggles how to find a way each day to live without him.
As I headed out of our home today, I noticed that Mattie's wind chimes on our deck were twinkling. Mind you there was no wind out, but yet these beautiful chimes (which he got me for my birthday) were making music. I couldn't help but stop, and chat with Mattie. I told him I knew he was there with me, and he was providing me with this lovely music to start my day to tell me he is thinking of me and loves me. Naturally these chimes could be producing music for a host of reasons, but for me, the realistic explanations do not matter. To me these chimes are a direct communication link for me to Mattie. Hearing these chimes mean a great deal to me, and I still cling to signs in my environment and world to Mattie and his happiness.
I have to truly believe that after 13 months of watching Mattie suffer through chemotherapy and surgeries, and then a very, and I mean very painful and traumatic death, that these events have left me weak, fatigued, and emotionally closed off to processing my true emotions. Peter and I have experienced one trauma after another this year. Specifically we went from one bad diagnosis to another, and one horrific treatment to another. There is just so much the human spirit can handle before it just shuts down. I held it together for Mattie all these months, but at the same time, watched him slowly die over the course of this year. So part of me had 13 months of grief work to deal with, and yet the other part of me knows that I have shut down now for self protection purposes. It would be nice to be able to grieve immediately I suppose, but this is not my trajectory, and I just have to come to peace with this. My process will be slower, perhaps more complicated, but nonetheless it will happen, but on my own terms. So I guess my message to those of you who interact with me is don't assume that everything is fine because things appear okay and sound okay.
Peter was compelled today to visit Roosevelt Island. Neither one of us have gone back to this special park since Mattie's death. This Island meant a great deal to Mattie. We spent many happy hours there, where Mattie learned to skip a stone, collect leaves, spot wildlife, and race his remote control boat. It was our retreat from the busy world of Washington, DC that we live in, and we just love how this Island is literally only minutes from our home. Peter walked the Island today in the rain. No one was on the Island except for him. Peter visited a special tree that Mattie loved on the Island. This tree produces beautiful round fruit (grapefruit sized), that has a citrus fragrance. As Peter approached the tree, there was ONLY one fruit to be found lying on the ground. None were hanging on the tree either. Peter grabbed a hold of this large fruit, and when I arrived home, I saw it sitting on our kitchen table. It is amazing how certain sights can take you back in time. I can almost hear Mattie laughing and questioning the origin of this fruit. I told Peter I was so happy he took the fruit home with him, because he would have made Mattie proud. This is exactly what Mattie would have done, and in a way I felt as if this simple gesture of taking the fruit today celebrates Mattie's life, spirit, and memory!
I would like to share Ann's tribute to Mattie tonight. Ann delivered this during Mattie's Celebration of Life reception. Ann was our Mattie Team Coordinator, but over the course of 13 months, Ann and Mattie had many playdates together, in which they got to know each other as well as appreciate each other quite well. In true Mattie fashion though, he found a way into Ann's heart, and after a couple of months, I began to see that Ann also loved my son. The unfolding of their special relationship is something that I will always remember and will always cherish. In fact, for me spending time with Ann helps me keep Mattie's memory alive.
Ann's Tribute to Mattie
I stand here today to talk about the miracle of Mattie Brown – not the miracle of his physical healing – which we all hoped beyond hope to achieve – but the miracle of his presence. In his short 7 years here on earth – he infected each of us with a passion for life – for creativity - for being part of the process. He shared and experienced every detail of every task in such a passionate and intense manner. Mattie never did things the conventional way. He did things the Mattie way!! I learned quickly that by following his lead – the process would be more enjoyable, more of an experience and definitely messier!
When I went to see Mattie at Georgetown or at home in the past year, I always brought my “Mattie Bag”. In this bag I carried all sorts of games, science projects, art projects and the like – whatever I could find that I thought would capture his attention. My goal was always to ENGAGE Mattie in some activity – what I learned very quickly was that I was the one being ENGAGED. Mattie had a way of sifting through my bag and coming up with an idea (when Mattie Brown said, “Ann, I have an idea” I knew it was time to LISTEN UP!). He would maybe start with something from my bag (I think he did this to make me feel good – even on his sickest days – he was very much in tune with the feelings of those around him) – but then he would add his own personal twist. So, over the past year, my rock painting project became a fancy car wash and my volcano kit became an amazing jungle scene and even simple goldfish became some type of mushy soup that I was supposed to eat! He indeed ENGAGED me and captured my heart. He was present in every moment of life – he cared deeply and felt deeply and lived his short life to the fullest. In the world of Mattie Brown, there was no down time! He was always thinking and always creating and always present.
Mattie Brown was wise beyond his years - I believe he even tried to prepare me for his death. It was shortly after the horrible news of the spread of his cancer and I went to his house to offer support, but once again, it was Mattie who supported me. He was camping in his tent – lovingly grounded to the living room furniture by his devoted dad – and he invited me to get comfortable and talk to him. Well – Mattie had never asked me to sit down let alone lie down in the past year – as a rule, he had me running around searching for tools and batteries! So, when he wanted me to lie in the tent and talk to him, I was certainly listening. He asked me if I was comfortable, asked me how my day was and proceeded to tell me all about places I should make sure to visit – such as Roosevelt Island and California. He was weak and fragile on the outside but he was so strong and determined on the inside. Even though he had not been told of the return of his bone bugs, he knew I was sad and that his parents were sad. He was so emotionally clued in to those around him and cared deeply and tried to protect and help others. He was an angel for sure.
Mattie cared deeply…
Details mattered to him.
Fairness mattered to him.
Feelings mattered to him.
Friends mattered to him.
Life mattered to Mattie Brown
I believe that Mattie Brown was a PRECIOUS GIFT – each of us was allowed the opportunity to learn something from his life – now it is up to each of us to go forward and live our life in true Mattie fashion.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Your Mom's (Mattie's Grammie) tribute was one that really touched me. I thought she got to the heart of who Mattie was/is, so well. That "cheerleader" side of Mattie who could help you do what you thought you could not handle; what a wonderful gift that was, and amazing for someone so young to have it and know how to use it is very special. I know that right now you feel like you can't go on, but hear what Mattie told your Mom; "you can do this, I will be with you". Mattie will be with you as you go forward in your life, as you set up the foundation, as you find your way. I know he is watching and cheering you on. For today, take a space of time to just be, to breathe and to know that Mattie loved you with everything he had, and that was a lot!"
The second message is from a fellow RCC mom and friend. Beth wrote, "I want to first join others in commenting on how lovely the service and celebration for Mattie was. The love for Mattie was clearly seen in the people in the room. I'm absolutely in awe of the medical staff that fell in love with Mattie and loved him so much. It's a bit re-affirming to see that level of love, compassion and sadness in such a varied group of medical professionals. You certainly should be proud of the special little boy you raised who could bring over 400 people together to think of him, miss him, and support you. Your blog somewhere along the line became the March for a Mattie Miracle, and although the miracle we were all wishing for was not to be, I'd say that Mattie was a miracle all by himself. My husband was to be out town on Saturday so I had planned on a sitter keeping Charles and his brothers while I attended the service. For this reason, I had not told Charles that Mattie had passed away. I did not want a sitter having to deal with the questions about any of this so figured I'd wait and tell him after. So, on Saturday I told Charles of Mattie passing away. On Saturday, Charles refused to believe me. It was not until Monday that he believed me and began asking the questions one might expect from a 7 year old. So, we've talked on and off about Mattie and how you and Peter have celebrated his life and we are planning our Mattie garden for the seeds. As I will never understand the mind of a 7 year old, I can't understand how Charles is processing, but I'd say he is. Today, he told me and his brother the story (his story) of how he and Mattie became friends and I thought I would share that with you in Charles's words as much as possible."
Charles to his brother: "I met Mattie in the Pretend Room at preschool. I was in the loft and Mattie came up and asked for scissors while working with purple tape. I went to get the scissors and then I cut the tape Mattie was working on. He got really mad at me so we did not become friends right away. Later I brought more tape to the loft and Mattie then liked me. I still remember it so good. I even remember what Mattie was wearing - a red and white striped shirt. After that day we were friends and even though we would sometimes fight we were friends. We used to get into trouble saying 'potty' words and the teachers would tell us to stop, but it was fun. One day I even went to his birthday party at the zoo and it was raining and we made all the grownups walk around in the rain with us and we just laughed at them."
Beth wrote, "Now, of course, who can say how accurate his story is, but to him it is a living, breathing memory. Was the tape purple? Who knows? Was Mattie’s shirt red and white? Who knows, but those images were very clear to Charles as he explained all of this to his brother. I plan to take a copy of this email along with the programs from the service and celebration and put them in the things I saved for Charles from Resurrection. So, one day when I pass on that box of memories Charles will go through them and take some time to celebrate that very special day at RCC and that very special boy, Mattie J. Brown."
October 14, 2009
Tonight's picture features Mattie in our hotel room near Sloan Kettering in NYC. Mattie is beaming from the care package that Linda, Georgetown's childlife specialist, sent him by mail. Linda always knew what Mattie enjoyed playing with and she kept him stimulated for over 13 months. I assure you that was NOT an easy feat. As a cancer patient, Mattie received many wonderful gifts from friends, family, and the hospital. At times I would pause and wonder if it was okay for Mattie to receive SO many things and whether it was also okay to motivate him to participate in physical therapy by offering up prizes and other material incentives. These issues are things parents naturally struggle with when raising a child. But here is my conclusion..... when you are caring for a child with cancer, everyday should be Christmas! I am happy that I allowed this to happen. Every gift made Mattie happy! The gifts brought a smile to his face, and my God if something was going to do this for him through all this torture, then I say bring on the gifts. Some times as a parent you have to weigh the circumstances and therefore make decisions based on those situations. I have no regrets, we denied Mattie nothing, and in the end, if I withheld these objects from him, I would have felt great remorse. I now reflect back on the amount of pain and suffering Mattie contended with, and I have no doubt that not only were the gifts well deserved, but he needed this stimulation of playing with something new each day. Mattie also needed to feel the love from others who generously supplied these items. So with that said, I THANK all of you who so generously brought or sent Mattie gifts throughout the year. Your gifts made a great deal of difference to his quality of life.
Poem of the day: It's Still a Blessing by Alma Malanyaon
Lost in the sea of grief,
Pained by a tragedy uniquely mine,
Hope and meaning seem all gone.
Dark clouds hover each morning,
Speaking of the same heartaches and pains.
Struggling and questioning each passing day
Hundreds of questions to God were asked,
Why God? Oh God,my son,
Whom I love so much!
Then somehow led by the spirit,
To pathways never trod before,
With renewed aware of the breaking dawn.
Live one day at a time they say.
For the journey is indeed long,
And filled with painful memories all along.
Mysteriously, in the secret of time,
Tears and smiles become one;
Pains and joys bring calm.
Shadows of hope taking form,
Strength and willingness to reckon,
To search and no longer to reason.
For somewhere beyond the obvious,
God's love abounds to bring
Peace and comfort, and stillness of heart.
To look at suffering with deeper understanding.
That my own and those of others,
In this world are purifying.
Greater realization of the shortness of life.
Life's so precious, life's so fragile,
Only in love will we find it's true meaning.
Loving and giving, our reason for living.
In generously serving others,
We gain wisdom, strength and healing.
Go on with your life, so to love and to care
For there are thousands of others,
With whom you can share.
Truly in death, there is life
Life for those who continue to make love
The very core of our human act.
When suffering begets such meaning,
It's time to be grateful; For this is a blessing.
Peter and I had the delightful opportunity to meet with Peter Keefe today. Peter K. and his family are huge Mattie supporters and our sons were in the same kindergarten class together at the St. Stephen's/St. Agnes School. Peter devoted over four hours of his time today to us to discuss the creation of Mattie's foundation in depth. I am not sure how you thank someone who so freely gives of his professional time and skills, but what I also love and admire about Peter is passion and commitment to Mattie and to other children who suffer with Osteosarcoma. I felt that we accomplished a great deal in the meeting, and are on our way to completing the necessary paperwork needed to become a non-profit corporation. In terms of our progress, our next step is that we will meet with the lawyers again on Friday to discuss the paperwork in more detail. We want to thank Peter for lunch today, and in the midst of talking about the Foundation, we landed up talking about Mattie. However, it was the nature of our conversation today that truly struck a chord in my heart. I landed up welling up with tears, and I guess I am deeply moved by hearing how Mattie's life has affected others. I am also very appreciative that Peter has the courage to talk so openly with us and is comfortable with me reacting any way that I must at this point to express myself.
In our conversation today, we determined that I should be the president of Mattie's Miracle Foundation. I must admit I am excited and yet very nervous at the same time. I believe with all my heart that something must be done about pediatric Osteosarcoma in our Country, and that Mattie's suffering and death must have a purpose and a meaning. After all this is what motivates me to do this in the first place. But I also realize I have a huge learning curve ahead of me. I am not a trained fundraiser or a business person. I am not saying I can't learn these skills, but I also am aware that I am exhausted and also haven't even begun to grieve. Mostly though what makes this so daunting to me is that I feel the success of Mattie's Foundation is a direct reflection on my love for him. As if my great love for him will naturally make this Foundation successful. Rationally I know this makes no sense, but when dealing with a grieving mom, not much makes sense. I also feel as if the Foundation is a direct link to keeping Mattie's memory and legacy alive. The idea of the Foundation not being successful would represent to me a failure on my behalf. It is almost as if the success of the Foundation is the one tangible thing I have to being Mattie's mom on this earth. When all these overwhelming thoughts float around inside my head, I realize just like with grieving, I have to take this one step at a time, and to be a little kinder to myself.
My parents are leaving Washington, DC on Thursday and are headed back to Los Angeles. Peter and I have appreciated their visit and support. We all went out tonight for dinner, and of course had a some wonderful reflections about Mattie's life and discussed the formation of the Foundation. I will be sharing several tributes with you this week that were made during Mattie's Celebration of Life ceremony. I would like to begin this series with the tribute given by my parents at the ceremony.
Mattie Celebration Tribute from Vicki's Parents
PopPop’s (what Mattie called Vicki's dad) Introduction:
Good evening to all you beautiful and wonderful family and friends of Mattie. My wife will make the opening comments and I will make the closing remarks. So here’s Grammie.
Grammie’s (what Mattie called Vicki's mom) Part:
When I was asked to speak about my darling, dearly beloved grandson, Mattie, a part of me refused to accept the reality that Mattie died and was never coming back. Grandparents are not expected to outlive their grandson. That is not supposed to happen! It is a violation of the natural order of life. I felt the circumstances of his death were so profoundly painful that I would NOT be up to the task and could NEVER do justice to Mattie’s memory!!
But, then I heard a familiar little voice inside my head say: Grammie, You can do this, I know you can do this! I’ll hold your hand and be right there with you all the way.
Where had I heard those words before? On many occasions, but two events stand out in my mind, had a profound effect on me and so I would like to share them with you this evening. We were on a family vacation visiting Sea World in San Diego. Mattie had a ball visiting all the exhibits, laughed his heart out at the antics of Shamu, enjoyed seeing the animals, the park and all the other lively events. It had been a very good day but as were leaving the park, we came upon the famous Sea World Space Ship sitting on its launching pad. It was ready to be lifted way up into the air where it would revolve 360 degrees so that its passengers could get an awesome bird’s eye view of beautiful San Diego. Mattie was intrigued and wanted to go on it. I urged him to go with his parents but I refused to join them because as I explained to him, I feel very queasy in high places. He agreed but when he came back down, he ran over to me and insisted that I should not miss a wonderful experience like this. He used all of his considerable charm and was quite persuasive. I wanted to say NO but how could I resist him when he said:
Grammie, You can do this. I know you can do this! I’ll hold your hand and be right there with you all the way.
I heard this same appeal in Florida at a zoo for wild animals that had an amusement park. He asked me to join him on the Ferris wheel. I told him the one and only time I ever went on a Ferris wheel, I demanded that the operator stop the ride and get me down because it made me so sick. But he could be a very persistent little fellow, would NOT take NO for an answer, and how could I resist him anyway when he said:
Grammie, You can do this. I know you can do this! I’ll hold your hand and be right there with you all the way.
He won, I lost on both occasions. I ended up on the Sea World Space Ship and took my first Ferris wheel ride after many years. Yes, Mattie introduced me to a world of adventures I might never have experienced without him. He made me confront my fears, and helped me to overcome them with a little bit of good-natured prodding. On our flight to DC on Thursday, we hit a bit of nasty unexpected turbulence that was so bad, the Captain announced that people standing in the aisle should immediately sit on the floor because of the danger of hitting their heads on the ceiling of the aircraft. Although seated I took no comfort in being buckled in, because the plane was acting like an out of control roller coaster, and I could tell that I was on the brink of behaving very badly, and was about to lose “my cool.” Suddenly, but not unexpectedly that little voice echoed the now famous Mattie Mantra once again in my head:
Grammie, You can do this. I know you can do this! I’ll hold your hand and be right there with you all the way
I calmed down and actually did not panic. Mattie would have been proud of me because he would have admired the courage I displayed in handling a frightening experience. I for my part confess that any courage that I have shown on the airplane pales in comparison to what I have witnessed first hand by watching the courage Mattie manifested daily in confronting the torture that cancer put him through for over a year. Mattie in his own way prepared me to be strong enough to cope with the hard times ahead and in some ways knew that there were storm clouds gathering whose ominous threat could not be overlooked. He knew I was a softie and wanted to strengthen me for what he sensed was yet to come. In essence, he knew me better than I knew myself and had an uncanny way of figuring out most people he came in contact with. That was one of his most extraordinary qualities. He could assess character instinctively like a worldly-wise adult, though only a child, and often understood others better than they understood themselves.
Now we must come to the part about his illness. We received an unexpected call from Vicki with the shocking news that Mattie had bone cancer. Mattie was to wage a long hard fight for his life over the course of the next 13 months. Two communities came to their rescue. They are RCC and SSSAS, both schools that Mattie attended. The two school communities along with Team Mattie, headed by Ann and Alison helped Vicki, Peter and Mattie through the stress and trauma of dealing with the hardships of cancer with unstinting support, commitment and unfailing devotion to their cause. I also want to thank the doctors, nurses, child life staff, art and physical therapists, techs and the social worker at GUH who were all united in their efforts to make Mattie as happy as possible during his time in the PICU. It was not an easy task but they were motivated by Mattie’s spunk, energy and love of life to give him every chance to win his battle against the deadly “bone bugs.”
My husband and I also want to thank Tamra, Ellen, Christine, and Susan for making our visits to Washington as enjoyable as possible. All of you provided us with important time-outs that relieved our stress when our hearts were breaking. Thank you all so much.
One last thought: When Mattie attended Resurrection during his first term as a preschooler, he was called “Mattie Moon,” moon for M, the first letter of his name. He identified with the moon from that day forward. One of our favorite games was to look for the moon when night began to fall. Whenever we traveled by car, we’d all look out the windows hoping to be the first to spot the moon in the sky and shout out “Mattie Moon.” Mattie would get so excited he would jump for joy and reward us with that beautiful incandescent smile of his! The moon fascinated Mattie so we never tired of playing the game and because of it we were all moonstruck too! As a celestial body, the moon’s ultimate significance was in its ability to light up our darkened skies like Mattie’s life lit up our world, bringing joy and happiness to all lucky enough to enter his orbit, Is it any wonder that just like the moon lives permanently in the heavens, that smile of his will live forever in my heart?
So it seems only fitting that my husband in his closing comments should reflect on Mattie’s connection to the moon and what it means to both of us now.
I want to recite a portion of the lyrics from a song that came out in 1938. It’s entitled, “I’ll Be Seeing You”
I’ll be seeing you in every lovely summer’s day,
In everything that’s light and gay
I’ll always think of you that way
I’ll find you in the morning sun
And when the night is new
We’ll be looking at the MOON
But we’ll be SEEING YOU
I want to close with a quote by Carl Sagan. He was a brilliant, famous scientist and astronomer and a man of great intellect. He was born in Brooklyn, N.Y. to a Russian Jewish family and died in 1996 at age 62. He conveyed in his words the impact Mattie will forever have on our lives. He said:
“To live in the hearts we leave behind is never to die.”
Ciao, Captain Mattie. One day we will all be together again and when we are, our game will go on as before with you as our leader.
God Bless Mattie
I would like to end tonight's posting with four messages. The first message is from Mattie's art teacher. Debbie wrote, "Your precious Mattie was my very first discovery and protégé. No matter what he decided to do in the future, one thing I knew for sure was that he was already an artist, a fine artist."
The second message is from my friend, Charlie. Charlie wrote, "I don't know how you "make meaning" of what's happened. I do know you have to go on without Mattie. Your life is altered, you are on a road you would never have chosen to travel but knowing you and Peter, together you will make something positive happen. You can't rush it though, you have to give yourself time and space to grieve, however your mind/body/soul chooses to acknowledge the loss of Mattie in your life. Someone described early grief as a march through the desert, with few colors and no idea where the oasis is but you keep going with faith that it is there to be found. Today I wish you a space in which to seek where your first oasis might be."
The third message is from a former student of mine. Shari wrote, "Hi, Dr. Sardi. My husband and I came to Mattie's funeral on Saturday, but did not get a chance to offer our personal condolences to you and your husband. From the time I heard about Mattie's cancer, I was touched and fascinated that something so horrible could happen to such a wonderful and caring teacher and mother. I knew that no matter what, you would stop at nothing to get him the best care possible. Clearly you did and that was evident in your blog posts, efforts to raise money and especially awareness about osteosarcoma. My heart goes out to you as you continue to grieve such a huge loss."
The final message is from a colleague of Peter's. Sharon wrote, "Thank you so much for inviting us all to share in Mattie’s beautiful services and tributes on Saturday. I think I speak for many in saying that I wish I could find words to express how immeasurably sad I am that you and your family have had to endure such suffering and loss. But I’m also grateful that you have been so generous in sharing your journey over the past 13 months with your communities. What to you may have been at times a joyful sharing of happy experiences, at others a more difficult and painful reporting of physical and emotional pain, to us it has been a learning experience that we will take with us through our entire lives. We have grown as human beings, as parents, and as a community because of the way you have let us into your lives. This is part of Mattie’s legacy, and we are so grateful to you for sharing it with us. As parents, we know that we are changed profoundly when that little bundle of joy is handed to us and we start out on the journey of learning to be parents. Never again will we see the world without that lens. When we hear of world events we think about their impact on the children of the world. When we hear a happy story about a stranger’s child we laugh and smile with them. When we hear a sad and tragic story about a child we feel an immediate empathy and cry along with that child’s parents. And now you are profoundly changed by the loss of your precious Mattie. Never again will you see the world without wishing he were there to see the good times, wishing you had him to protect from the bad times. This is a new world you now find yourself in, and I hope that the love of your family and your community will help you navigate through it. Although Mattie’s physical presence is no longer in your lives, your role as Mattie’s parents is not over, and I look forward to seeing how it develops in years to come as you work on his foundation and continue the work you have started to educate about and advocate for research into cures for childhood cancers. Mattie truly does live on in all of us: you, his family, the communities that knew him, and those that have come to know him through you."
October 13, 2009
Can help her feel not-so-quite
Tonight's pictures feature the children at Mattie's celebration of life reception. We were very moved to see so many of Mattie's friends in attendance. It is a very hard decision for a parent to make as to whether to take a child to a funeral service. With that said, I feel the children's presence added an important dimension to the celebration. Just by having them around brought a feeling of life and energy to the event. I have no doubt Mattie was looking down and smiling at his friends on Saturday.
Left: Mattie's friends, Abigail and Elizabeth, preparing to sing a "Mattie Song" to all of us before the balloon release. Right: In the children's room, they had the opportunity to participate in a grief activity. This activity was hosted by my teaching assistant, Carrie Barone and several other GW doctoral students: Yeowon, Margaux, Taylor, and Lindsay. I thank all these talented ladies! In the picture, the children are working on decorating a stone as they transform it into a memory stone.
The children also surprised us with a special song they created. They generated the lyrics themselves, and we want to thank James Cooper for playing the guitar and helping the children rehearse for their debut. The song lyrics are below, and I could tell everyone present was deeply touched by the children's thoughtfulness and love for their friend. I truly believe that creating the song, performing it for all of us, participating in the balloon release, and having the opportunity to create a memorable craft were all wonderful ways to remember Mattie and help the children heal and come to terms with the loss of their friend.
Mattie had a nice life
But now it’s time to go
To heaven above
To God up there
He’s going to have
A better life above
Mattie was a great friend
Always loving Scooby Doo
Think of him everyday
He’s terrific too
Interested in nature
Loves to play with bugs
Mattie was a great friend
Through all the rough times
But now he’s left
To God Above
To God Above
October 12, 2009
Tonight's pictures feature only some of the art displays at Mattie's celebration of life reception on Saturday, October 10. Every piece of art you see was a Mattie creation! He was very prolific this year, and art was a wonderful form of therapy for him. I want to thank Tamra Bentsen, Deb Pollak (Mattie's art teacher), Liza May and other Team Mattie volunteers for displaying this art in the most appealing and visually stimulating manner. In addition, we want to thank Dr. Bob for generously taking pictures for us throughout the entire reception!
First row: Left: On this reception table you will see Mattie's Empire States Building erector set, the lighthouse card he designed for me on my birthday, a red rocket ship, and a host of other wonderful pieces. Right: Many of the wonderful canvases Mattie painted in the Lombardi Clinic at Georgetown University Hospital.
Second row: Left: A display board with all the Valentine's day cards Mattie made for Vicki, along with the famous statue of Dr. Crazyhair. Right: The Lego hospital Mattie created from his imagination and was entered in the Hospital art show. The theme of the show was "what a hospital should be..."
Poem of the day: Poem of Life
Life is but a stopping place,
A pause in what's to be,
A resting place along the road,
to sweet eternity.
We all have different journeys,
Different paths along the way,
We all were meant to learn some things,
but never meant to stay...Our destination is a place,
Far greater than we know.
For some the journey's quicker,
For some the journey's slow.
And when the journey finally ends,
We'll claim a great reward,
And find an everlasting peace,
Together with the lord.
We have appreciated all the wonderful e-mails you are sending us about your impressions of Mattie's funeral and celebration of life reception. Every detail you captured and shared with me, means so much! Peter and I enjoyed talking with all of you on the receiving line, however, in the midst of doing this, I am afraid we were unable to mingle around and hear your impressions of Mattie's photo albums and art work. Our intention for the celebration of life reception was to highlight the creative side of Mattie and to also capture his spirit to have fun and unite people together. It is my hope that you would agree that this was indeed accomplished!
I received many e-mails regarding Mattie's "Mr. Sun" painting. Many of you did not realize that this glorious painting was in 3-D. In fact, the colors of the painting are so exquisite, that it is hard to actually photograph this piece and do it justice. Based on your comments, I realize that by seeing this painting in person, it took your breath away. I understand that completely. This is one of the greatest gifts I have that was produced by Mattie's hands. In addition, I am honored to know that several of you took pictures of "Mr. Sun" and it serves as the wallpaper on your phone. I also find it fascinating that after leaving the reception some of you spotted a rainbow as well as the sun in the sky (especially since Saturday was a very cloudy day!) and thought about Mattie. This is music to a mother's ears!
My intention for tomorrow night's blog is to highlight the children's room and their events that took place at the reception. As a mental health professional, in all good consciousness, I could not host an event that did not help the children process this loss on some level. I am fortunate that I could call on several of my fine GW doctoral students and graduates to help with the children. They did an outstanding job, and I will feature this tomorrow. However, I must say that I find it fascinating to see how Mattie's cousins and friends are processing this tragedy. Never underestimate children. They are deeply feeling, they watch the adults in their lives, and they DO experience grief. Not addressing their grief is not only unethical, but it is also not healthy. I do want to mention that throughout the entire reception, my oldest nephew, Nat, would find me almost every 30 minutes, NO MATTER WHERE I WAS, and he would give me a hug. It did not matter what I was doing, or who I was talking to, he continued on his mission. In his perception, I just needed the support. His thoughtfulness and maturity got me to pause. As I noticed his pattern throughout the night, I would joke with him, and I would say, "here comes my grief counselor checking in with me for my half an hour hug." These hugs meant a great deal to me, and it showed me that Nat understood all too well the depths of the loss I was experiencing. So yes children are innocent and they may process grief differently than us, but never discount that they have real and deep feelings that must be talked about or expressed in some fashion.
I would like to share a letter I wrote to Mattie after he died. In fact, Mary, Mattie's technology teacher, encouraged me to do this. Initially this letter was going to be inserted into the video. But the letter took on a life of its own, and it did not fit well into the video. So instead, Tamra and Deb Pollak decided to turn the letter into a poster (thanks Luda!) for all of you to read at the reception. For those of you who were unable to read the letter, I attached it here!
My Dearest Mattie,
It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.
This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.
Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.
So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.
I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.
When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.
The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.
Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!
Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!
I would like to end tonight's posting with seven messages. The first message is from my friend, Charlie. Charlie wrote, "Mattie's path took him over a very short road but what a rich and compelling road it was. The most beautiful thing about Mattie's road was how many people he was able to persuade to walk it with him for a time. Doctors, nurses, medical staff, teachers, friends, even those who had never met him person, all joined with him in his march. What an amazing feat for anyone, let alone a seven year old boy. And the path was made fun and full of laughter even as the huge boulders of fear, pain and disease and were navigated along the way. Vicki, I know your fear is that Mattie will be forgotten. Trust me when I say, that those of us who were privileged to walk with Mattie either in person or virtually, will never forget the gifts he shared with us. My prayer for you today is to find a feeling of peace in knowing just how much Mattie gave to so many."
The second message is from a fellow SSSAS mom and friend. Thank you Tamra for helping to plan a fabulous Celebration of Life reception. Mattie would have been so PROUD of you! Tamra wrote, "I am thinking of you, my friends.Saturday was a most beautiful, sweet, and overwhelming day. Love surrounded everything. All for the love of the amazing Mattie Brown. Oh, so grateful are we - our family - that we knew Mattie and will continue to celebrate and remember him always. He sprinkled eternal joy in all of us.We will also continue to nurture and grow our friendship with the two of you."
The third message is from Mattie's first preschool teacher and our friend. Margaret wrote, "You and Peter have been in my thoughts and prayers all day. I just want you to know that yesterday was a beautiful and sacred day...one that will remain a life-altering memory for all who participated. Every elegant detail was exquisitely executed; all of your efforts and personal direction were apparent from beginning to end. Mattie is, once again, so proud of his amazing mom and dad!"
The fourth message is from a colleague of Vicki's. Jay wrote, "WHAT A BEAUTIFUL AND MEANINGFUL MASS AND RECEPTION, FILLED WITH LOVE, TESTIMONIES AND COURAGE. I ENJOYED MEETING PETER AND SEEING YOU YESTERDAY. I FEEL LIKE I MET MATTIE, AND THANK YOU FOR SHARING HIM WITH ME..... MAY GOD GIVE YOU ALL LOTS OF STRENGTH IN THE MONTHS TO COME."
The fifth message is from one of Mattie's favorite childlife interns. Lesley wrote, "The service on Saturday was truly extraordinary. The love and care you have as parents shines through in all that you do. The day was thoughtful, touching and brought not only tears, but laughter, which is the only way Mattie would have wanted it. Your precious son touched and changed the lives of so many, and that truly showed on saturdays events. Mattie will never ever be forgotten, and he lives in the hearts of everyone he met, and even those who have only heard of him. On my way out of the funeral I snapped a picture of the Mattie Sun painting with my phone. I set it as my background as a reminder every time I look at it to live each day to the fullest, just like Mattie. Your entire family is and always will be an inspiration to me."
The sixth message is from a friend of my sister in law's. I got to know Lesley this year through our e-mail exchanges. She surprised me on Saturday, by traveling from Boston to attend Mattie's funeral and to personally give me a hug. This meant a GREAT deal to me! Lesley wrote, "Karen's email sums it up for those of us that only met Mattie through your words. I can assure you that he will never be forgotten. You taught me to stop trying to change what makes my son so unique. It is only this year that I was able to stop and clearly see Max's gifts without judgement. It was your voice, journey, and modeling with Mattie that taught many how to love deeply. Seeing Mattie's art was breathtaking. Your pictures on the blog were beautiful but to see this little boy's magic in person left me in awe.......it was stunning. When I told my husband that I wanted to pay my respects to your family he wondered if it was appropriate, and I did too. It was out of my character but I desperately wanted to give you a hug and let you know that strangers will never forget your amazing, brave, funny, wicked smart, Mattie."
The final message is from Dr. Shad. Dr. Shad is the director of the pediatric Lombardi Cancer Center at Georgetown University Hospital. Dr. Shad was the doctor who assisted us as Mattie was dying. Dr. Shad wrote, "What a beautiful tribute to Mattie yesterday. Once again, the two of you demonstrated the immense love and unbelievably strong relationship that you have with Mattie and each other. The entire day was carefully planned and elegantly executed. The tribute in the evening was a testament to who you are as individuals and how much Mattie was loved by everyone who had the good fortune to come in contact with him. Thank you for inviting me to be part of the service. It was an honor to be included. I wish you both peace in your lives, and success in all you efforts to make a difference in the lives of children suffering from cancer. The void that Mattie's passing has left may never go away, but your efforts to change things will make it more bearable. I look forward to meeting with you and joining hands with you in realizing your efforts - the best tribute you could pay to Mattie's memory."
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.
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.
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.