Tuesday, October 20, 2009

Tuesday, October 20, 2009 -- Mattie died SIX weeks ago today!

Tonight's picture features Mattie on a Wii fit. Mattie's preschool teacher, Lana, generously donated this piece of equipment to the Childlife room at Georgetown Hospital. Mattie loved it, and I am so happy that other children into the future will have an opportunity to play and enjoy it as well. It helps me feel as if Mattie's memory is alive and well on the fifth floor of the hospital. Mattie loved doing yoga on the Wii fit, and he was very good at it, despite having three limb salvaging surgeries, it did not hold him back nor did it effect his balance!

Poem of the day: When I Must Leave You



"When I must leave you for a little while
Please do not grieve and shed wild tears
And hug your sorrow to you through the years.
But start out bravely with a gallant smile;
And for my sake and in my name
Live on and do all things the same,
Feed not your loneliness on empty days,
But fill each waking hour in useful ways,
Reach out your hand in comfort and in cheer
And I in turn will comfort you And hold you near;
And never, never be afraid to die,
For I am waiting for you in the sky!"



It is hard to believe that Mattie died only six weeks ago. To us, it seems like the battle was only lost yesterday. But I have come to understand the battle will be something that will always be a part of our lives. I deeply MISS Mattie, and this week, for the first time, I am able to at least verbalize this to myself. In fact, when I enter and exit our home, I talk with Mattie's chimes (which our outside on our deck). To me they symbolically represent Mattie, and I always check in with them. But now I feel something has changed within myself , which has enabled me to let down my defenses, and when I look at Mattie's pictures or his chimes, I am able to say, "Mattie I miss you, I love you, and not a second goes by when I don't think of you." I am not sure what broke those defenses for me today, maybe because today is the sixth week anniversary of Mattie's death or the simple fact that I am not feeling well.

I woke up feeling very ill. I do not have the flu, but instead a chronic condition that I suffer from that resurfaces usually under times of great stress. Needless to say, with Peter at work, I knew I needed help today, since I could bearly function. As has been true for the last 14 months, when I have a problem I turn to Ann. Ann had her hands full with a sick child at home, but she added me to her mix. She and Bob both cared for me today. Bob helped me with medication, text messages, and locating an appropriate specialist for me. Ann ran around getting my medication, making lunch, and being supportive. Despite feeling so ill, I couldn't help but reflect today, that Mattie did not die until he felt there was a support network around who could care for us. What a gift, I just wish I did not have to receive such a life altering realization in such a hard and painful way.

In the midst of great pain today, there were funny moments as well. As I was waiting on hold with Washington Hospital Center to make a doctor's appointment, Ann's daughter, Katie, who was home sick, was sitting next to me. We were both commiserating about our pains. Katie observed the length of time I was on the phone waiting to talk to a doctor's office and she couldn't get over it. I joked that they were lucky I wasn't dying, because I would have died during the time I was waiting on hold. Minutes later Katie repeated the same comment to me while I was still waiting on the phone, this reminded me of Mattie for a second. He did the same thing to me when I spoke, he always reflected back what I was saying. For just that second in time, Katie made me smile. The other funny moment was when I spoke with Mattie's doctor today, Dr. Kristen Snyder. Peter and I were scheduled to have dinner with her tonight, but I knew I was in no state to go anywhere. Kristen joked with me that perhaps I just did not want to see her. Which you truly need to know is very funny and couldn't be farther from the truth! I am very fond of Kristen, and I am deeply saddened that she is not a part of our lives, and of course still Mattie's doctor. In fact, during Mattie's funeral, the only time I truly cried was when Kristen greeted me at the church. Kristen helped Peter and I fight the battle of all battles. You can't fight this battle and not become bonded with a person. Which is why those who were in my life during this 13 month nightmare have become a part of me. I miss these individuals, but they remain always in my heart.

This afternoon, I drove myself back home, and spent the rest of the day in bed. I am dealing with a great deal of physical pains, a migraine, and in this weakened physical condition, my emotions are literally all over the place. Which only verifies for me how connected our physical state is to our emotional one. By being more vulnerable physically, it is enabling me to reflect even deeper on the loss of Mattie.

In the midst of great sadness today, I received a beautiful e-mail from Karen's mom. As many of you know, Karen is my lifetime friend. We have been friends since 6th grade. What you may not know is that Karen lost her dad when she was only two years old. Today Karen's mom wrote to me about how she felt when her husband died suddenly. Karen's mom wanted me to know that she too felt numb and emotionless for months after her husband's death and she wanted to reassure me that nothing was wrong with me at all. This was actually refreshing to hear, since it not only normalized how I was feeling, but it made me felt heard and understood in a profound way. In a way, today's e-mail connected me with Karen's mother in a very special way, not only because she is Karen's mom, but because we are both women who have experienced a profound and unexpected loss. You will find Mrs. Fischer's e-mail to me below.

I would like to share the Mattie tribute that Ashley delivered at the Celebration of Life ceremony. Ashley is a fellow RCC mom and friend, but Ashley is also a reverend and coordinated the two Mattie prayer services offered throughout this year for our Mattie supporters. Ashley's words were very powerful and set a very meaningful tone for the rest of the ceremony.

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Tribute from Ashley Goff Glennon

From the day our family learned of Mattie’s diagnosis of multifocal osteosarcoma, my spouse, Bob, and I were honest with our three kids, Sam, Maddie and Ryan, about Mattie’s health and well being.

Many times, they would find us reading “the blog” and ask to look at pictures of Mattie. We explained the process of chemotherapy, the incredible love of Vicki and Peter, the care and support of Team Mattie. We shared with our kids the truth of Mattie’s life.

After Mattie’s death, when he completed his Great Labor, Sam asked, basically, now what?

We started off by explaining that Vicki and Peter made a choice to have Mattie cremated and we explained what that meant. After our explanation, Sam paused and said, “did Vicki and Peter decide to have Mattie cremated so he can go back into the world?”

Back into the world. Sam answered his own question of “now what.”

“Yes,” Sam, now Mattie goes back into the world.

It’s a beautiful image for the beautiful life of 7 year old Matthew J. Brown.

In this Celebration of Life, we will hear stories of Mattie, stories of his life that will illuminate what we are called to take back into the world from our experiences of loving and living with him from birth to the end of his lifetime. Mattie’s sacred spirit will be the tether, the connective tissue that weaves together these stories giving us the essence of his legacy and life sustaining energy.

When someone dies, that person keeps on creating when those around that person keep on remembering. Mattie, created in the image of God, was a creator—creating not just works of art but creating friendships, laughter, family, and, with his journey with cancer, Mattie created community. So while Mattie’s death means his lifetime is over, his energy, his creative juices, what he created, is not over.

We need to pick-up where Mattie left off. This is how we celebrate his life; this is how we take him back into the world. Together, we have this shared responsibility to keep his legacy alive. There is a responsibility to remembering.

We stay connected to Mattie when we keep alive, when we keep on creating, those things that were embodied within him—friendship, family, inquisitive nature, mischievous actions, community. When we are connected to Mattie’s legacy, we are called to a deeper engagement with the world around us—from being the best friends we can be, to holding your family tight with love and care, to creating beautiful things with passion and exuberance.


We welcome and receive Mattie back into the world when we live as Mattie, Vicki, and Peter lived together….when we live by each others side; when we fight like hell for each other, when we care for each other; when we make a difference together; when we act and live as each others keepers; when we welcome agents of healing, mercy and hope into our lives.

Mattie may have been just seven years old, but he was a creator. He has a legacy.

What is Mattie still creating? What is his legacy for you? What has he left us with? What work still needs to be done on Mattie’s behalf? What stories of Mattie are imprinted upon your hearts?

Because Mattie was 7 years old, he still had the capacity to live in the moment, to see everyday as a new day, a day with meaning and purpose. This is a spirituality of living.

So what does it mean in our day-to-day lives to live into Mattie’s legacy? How does celebrating his life change how we view our world?


Maybe….when you see cardboard boxes, empty egg cartons, paper towel rolls, you see not just trash but you see the potential for an artistic masterpiece.

Maybe….when you look out at the ocean, as Mattie did, you see the water for what it is—playful, powerful, awe inspiring.

Maybe…it’s time to love your friends with all your heart and soul just the way Mattie loved his friends.

Maybe…you’ll realize you need to be demanding to create what is right and fair and just. In that moment, you can remember and celebrate Mattie and his mom.

Maybe… when a co-worker needs compassionate leave to love his/her family, you advocate and care for that co-worker. In that moment, you celebrate and remember Mattie and his dad.

Maybe…when you find yourself thinking outside the box, you will remember Mattie and his clinical/medical are team who loved him down to his cellular level.

Maybe…. the next time you wear something that says Boston Red Sox, those clothes feel a little different.

When we remember, when we act, when we celebrate Mattie’s life, the Holy One, a sacred Spirit, is present. Empowering us to pick-up where Mattie left off, calling us to make his stories our own, challenging us to integrate Mattie’s own holy Spirit into how we live, move, and have our being.

Vicki and Peter. We love you. Mattie is still a creator. In the stories today, we will hear how and what he created. His lifetime may be over but his creative love will never end. This community is now the keeper of Mattie’s life and stories, bound together by a cord, sustained by the Holy, which will not break.

Hopefully you will see Mattie’s creative energy and passion through us. This is how we will celebrate his life and memory. You have our promise. May stories of your Mattie, especially the ones we are about to hear, guide us into being the most loving and compassionate people we can be.

We receive these things and more as we continue to create what is good in memory of Matthew J. Brown, when we take him back into the world. We can connect with a deeper sense of purpose and vision. We can have a greater sense of responsibility to others.

We may have come to this service and reception wondering how we can say goodbye but goodbye really isn’t enough. It never is. We need to keep on creating.

After this service and reception have come to a close, as we have been enfolded in stories that celebrate Mattie’s life, we will leave not just saying “goodbye” but saying, “Hey, Mattie, look what we are creating.”

May it be so and let us listen to Mattie stories of hope, promise, and celebration.
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I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry you are not feeling well but I am not surprised. Grief suppresses the immune system and it is normal for people to get physically ill while in mourning. It is real and not an imagined illness. As for disassembling Legos or giving away any of Mattie’s possessions, you will know when the time is right. Don’t let anyone push you with a “schedule” of how it should be. It should be as it will be. Today, take some time to appreciate the warmth of the sun and how it is reflected in Mattie’s art and in all of our hearts."


The second message is from Karen's mom. Mrs. Fischer wrote, "As I read your blogs I say to myself, "I know how she feels." I have been there. After the death of my husband, Louis, I could not cry. Everyone around me was crying, so I felt there was something wrong with me. I felt disassociated from the world in general and from the caring and loving and supportive family and friends around me. I was in shock and my grief just paralyzed me. It took a long time -- maybe months -- for me to be able to let go and weep.

William Wordsworth wrote these words in his poem "Intimations of Immortality" and they offered me some consolation at the time.

Thanks to human heart by which we live,
Thanks to its tenderness, its joy and fears,
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.

Like you, I felt that I had lost so much of "me" that I was uncertain of who I was. I was no longer wife, but widow. We had only just moved -- to a different part of the city, but away from familiar places and people we were close to. The new people--new neighbors-- did not know Louis or what we meant to each other. And I felt like the real me was not there. So much of what you say about your own sense of self and identity are familiar to me...and probably to anyone who has suffered such a profound loss. I have no doubt that your inner strengths, your wonderful Peter and your circle of devoted friends will help you find yourself again. It's a slow process. But after a time, you will realize that you are the Vicki you always were except a whole lot sadder, wiser, stronger and always always Mattie's mother. I know in my heart you will cope and persevere. It all takes time."