Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: 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!

A Remembrance Video of Mattie

March 20, 2010

Saturday, March 20, 2010

Saturday, March 20, 2010

Tonight's picture, though blurry, is still worth showing. It was taken in May of 2005 at Brookside Gardens in Maryland. The garden had a special butterfly exhibit, and as Mattie was walking through the butterfly house, a butterfly landed on his hand. As you can see from his expression, he thought that was VERY neat. We joked with Mattie that the butterfly matched his shirt, and Mattie commented that maybe the butterfly thought he was a big orange flower! Mattie loved butterflies and appreciated how delicate they are and he knew never to touch their wings, despite how tempting it seemed.


Poem of the day: Searching by Charlie Brown

What happened to my life?
What happened to my dreams?
I thought I had them all
But I was wrong it seems.
I was a counselor and an educator
And the mother of a boy
And when he became ill
I knew which one brought me joy
My life turned upside down
I would have given my all
If I could have saved
My son from death's call
Now I am struggling to find
Who and what I am supposed to be
Now that my role as a Mom
Is forever lost to me
I am doing the best I can
So please be patient with me
And help me keep his memory
Alive in my heart where it must be.

Charlie's poem is very touching and very appropriate as I am desperately searching for meaning in my life. Her last line, "and help me keep his memory alive in my heart where it must be," is something that I reflect upon often. When I look at pictures of Mattie, it almost feels like his presence in my life was a lifetime ago. Or perhaps a different life altogether. There are times I feel as if I am part of a witness protection program. Where my identity has been erased and instead replaced with a whole new one. It feels wrong to move on, it feels uncomfortable to proceed on each day, because when I think beyond the pictures, I recall what life was like with Mattie around. Our home felt different then. There was constant activity, noise, and excitement. Naturally when you are a parent you long for a moment of peace and silence. However, this type of silence is way over rated. The sights, sounds, and laughter of children are what makes life beautiful. Without it, the world seems a little less clear, a little more bleak.

Though it was almost 70 degrees in Washington, DC, I never left our home. I was very tired, not feeling well, and simply in a bad mood. I spent part of the day in bed and the rest of the day, I decided to get fresh air, and I sat outside on our balcony. My feelings of sadness and depression come in waves, and for some reason I am being hit full force this weekend. During these times I am very thankful for the understanding of those closest to me, because I know this can't be easy to experience and witness.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I think you did really well yesterday. So many places to fall apart and yet you managed to make it through and honor Mattie as you went along. Thank you for that wonderful description of the shopping trip; I could close my eyes and see the scene so clearly in my mind. Your discussions with Abigail that naturally include Mattie just confirm what I hear constantly from those who are grieving; hearing the name of the one we miss is fine; including them in our lives through what we do and by sharing memories is positive and not something to be avoided. I think it is important to say this as much as possible as so many still feel the best coping mechanism is to pretend the person did not exist and that is the opposite of what we all need to do. While I started out frustrated with today's practice and thinking that it would be a time when I got nothing out of it, I decided to let go of my expectations and found my connection soon after. I send you the release of expectations and the patience to allow yourself to be where you need to be today. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I just finished my blog reading. I admire how Peter and you show your respect and appreciation to others even when it might bring up painful memories of Mattie. Your day with Abigail sounded like a hoot. I can just picture the two of you sitting on the floor and discussing shoes while others are shopping. Spending time with a girl is a very different shopping experience than a boy. I know that Abigail loves having you as a companion. Ann continues to be a beacon of light and tenderness. I'm not surprised that she came and got you when the video came on. Did you win the silent auction? I didn't read other entries, yet, based on Charlie's note, you've gone to the doctor again. I, too, hope that what you are experiencing is just a stress reaction. I am happy to read about your daily activities and think that you might reenter the classroom sometime next year, even on a limited basis. Your presence as a mentor and educator is needed as we look to the future of the counseling profession. Since many of your former students and colleagues write of their needs for your good counsel. Today was a glorious day in NY. The temperature was so pleasant that I didn't need a jacket. A rare occasion! I pray that you had a similar day and might have spend some time on your Roosevelt Island. I do hope that one day the two of you might come and visit us on our Roosevelt Island. Be well, my friend, and I'll keep in touch."

Friday, March 19, 2010

Friday, March 19, 2010

Tonight's picture was taken in the spring of 2007, at Mattie's preschool end of the year party. You can see Mattie between his two block room teachers, Kathy and Marilyn. Mattie loved his time in the block room, and I think this photo is very fitting for today, since Peter and I attended the Resurrection Children's Center auction tonight. This is a preschool that will remain always in our hearts, because it nurtured Mattie in incredible ways thanks to the beauty of the teachers and administrators who work there. However, this community also supported us deeply throughout Mattie's illness, and this will never be forgotten.


Poem of the day: Angel Wings for Jenny (Jenny's Song) by Chrissy Breaux

The Angels whispered in the night,
As they quietly guided Jenny to the light.
So gently and caring, they came to bring her home,
As God opened his arms to welcome her there,
"In Heaven" he said, is where "She Belongs."
The angels laughed and sang, with such delight,
A young Angel, named Jenny flies tonight.
No more pain and suffering, she shall see,
For in Heaven only peace And happiness will be.
The people left behind will feel the pain
The absence of her love, the sweet sound of her name.
To us all, she left her love,
But now God needs her above.
She shall soar in Heaven now,
With wings of gold and Angel's love.
(As she whispers), "Thank you God, for freeing my soul
From a tired shell that I could not control
"Please tell all below, I'm happy and free
And I'm glad I knew their love"
"But in Heaven is where I wish to be!"

Ann's children began spring break today. Naturally there is a lot of excitement to being on vacation. I met up with them for lunch and shopping, as they are getting ready to go on vacation next week. There were moments during this shopping experience where I felt as if I needed a video camera. It was better than any reality TV series you have seen. Somehow Ann and I can produce enough chaos alone, but then add three children into the equation and it is down right comical. At one point as Abigail (Ann's youngest) is shopping for shoes, she pulled about seven or eight boxes of shoes off the shelf, and she and I were sitting on the floor of the store chatting about patterns, styles, and comfort. Meanwhile, during this conversation we are thoroughly surrounded by piles of shoes. It was a sight beyond sights! I almost forgot what shopping with children is like. Mattie hated shopping, so much so, that if I did shop, I would do "speed shopping." Today the old speed shopping feelings came back again, and it was funny, but it also reminded me of Mattie and our times together.

I took Abigail back to her home today in my car. I knew she just saw the Lion King in NYC, so I put that CD on in the car for us to listen to. She reflected on her recent trip to NYC and how much she liked the Lion King. In fact, she told me she liked the bird in the play, Zazu. She proceeded to tell me that she likes the name, Zazu, because it reminds her of Kazu (one of Mattie's buddies), and Kazu reminds her of Mattie. I love listening to Abigail's connections and insights, and naturally I told her that I was touched by her comment. When we got to Abigail's home, I helped her carry her new luggage into her house and up her stairs. We then began to pack for her vacation. Abigail and I both like clothes, the art of putting things together, and chatting about the process. What I quickly deduced today was my time with Abigail touches me deeply. One would think that perhaps this would bring me sadness connecting in this way. I suppose on some level it makes me sad because I realize Mattie is no longer by my side, but on the contrary, Abigail isn't afraid to talk about Mattie. She talks about him freely, and I find this refreshing and comforting. Also, Abigail has a presence and energy that is contagious, and I simply appreciate it and find it healing.

Tonight, Peter and I attended Resurrection Children's Center auction. This is the school's major fundraising event. Mattie attended this preschool for two years, and during this time developed tremendously. This was our first time back to the school since Mattie died. I adequately prepared myself before going, because I cried over this visit earlier in the week. There is great emotion over visiting a place Mattie has been in, and especially seeing his teachers, who I simply love. It was wonderful to see many of Mattie's teachers and so many families who supported us through Mattie's illness. Margaret, Mattie's first preschool teacher, understood how hard it was for me to be there today, and really worked hard to check on me, and support me through the auction. I also saw Kathy and Marilyn tonight (featured in tonight's picture). Kathy, a few weeks ago, sent me a wonderful picture of Lucy and Ethel (from the I Love Lucy Show). Kathy placed a post it note on the picture, and said this is Ann and Vicki. We are the modern day version of Lucy and Ethel. The picture meant a great deal to me, and I was happy to be able to thank Kathy in person tonight. My Lucy, Ann, wasn't far tonight at all times, and the beauty of Ann is that she seems to know when to swoop in and help, which she did when the children's video began playing at the auction. She walked me outside the room, because she could imagine seeing happy children and hearing music most likely would have been too much for me.

There were times being back at the preschool were challenging for Peter and I. I simply don't understand what happened to our lives. I always wonder what did I do to bring this about? As I looked around the room tonight, I told Ann, I feel like I am on another planet, looking in. I am no longer part of the parenting world, and in fact, I have been part of the cancer and dying world for so long, that it is sometimes hard for me to re-engage with the living. However, I was able to step outside those feelings during the silent auction. I was competing against another woman for an item, and it became down right hysterical the strategies and psychology used to win this item. Needless to say, it made me laugh, which isn't always easy to do these days.
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Abigail is a very special child with real "people skills." I hope she eventually finds a profession where she can make full use of them. It is wonderful of you to find the time to listen and to encourage her. So often we "multitask" when with children. We only half listen while we make a shopping list, check off our "to dos" or try to work on the computer. Really listening to someone is one of the best gifts we can give so your ability to give back to Abigail what her mother gives to you is a lovely way to close the circle. I hope the doctor's appointment shows nothing wrong aside from the stress, struggle and heartache of grief and that is not curable by a pill or any other medication we have on the shelf. Today I will send you healing energy from practice. I hold you gently in my thoughts."

March 18, 2010

Thursday, March 18, 2010

Thursday, March 18, 2010

Tonight's picture was taken in May of 2006. We took Mattie to Sesame Place in Pennsylvania for Memorial Day weekend. Mattie was very excited, and simply loved Elmo, the red Sesame Street character. You can see Mattie was holding two elmo balloons in the picture. We bought him one, and someone else in the park just walked up to him and gave him another one. Mattie was glowing! Mattie had a great time at the park, and he got to see his first memorial day parade, which was well done and very patriotic. The parade included active military personnel and this gave us an opportunity to talk with Mattie about the dedicated work of our service men and women who fight each day to protect our freedom. 

Poem of the day: Questions by Charlie Brown

How do I go on?
How can I not?
Who am I now?
Am I a mother?
Or is, that now “was?”
I am searching
For the me I need
To become
As I try to find my way
Through the labyrinth
Of grief
Finding some meaning
Some reason for being
Beyond just existing
Without you.

Charlie's poem tonight effectively captures the feelings I expressed in last night's blog. Mattie's death leaves Peter and I with many questions. Questions about life in general, questions about our lives, our purpose, and our roles. To learn to actually live again, and not live to just exist, is a challenging proposition. Seeing your child die of cancer, leaves us with a feeling of intense guilt and sadness, and in a way, we have to learn to give ourselves permission to continue living.

I met up with Ann today, and tried to finish packing up Mary's (Ann's mom) room at her previous assisted living facility. We have made great progress and even landed up donating a good portion of things that are no longer useful to Mary's care. Over lunch, Ann and I chatted about many things, and I realized today, or maybe verbalized it, that she shares the burdens that Peter and I face each day. She hears them, doesn't judge them, and freely accepts this is where we are at in any given day. Ann doesn't shy away from the painful feelings and things I tell her about, and instead only remains steadfast in her support. I am deeply grateful for her presence in our lives, for caring as she does, and for having faith that our lives will get better when we can't fathom that for ourselves right now.

This afternoon, when Abigail came home from school, she showed me her new wristbands (in the shape of animals) that she acquired. She told me all about them, and how girls like to trade wristband animals with each other. She then told me how much she enjoyed artstravaganza at her school today. I remember this special event when Mattie was in kindergarten. Basically local artists come to the school and share their skills with the kids and inspire them to also create. Abigail told me about a local author who came to her class and read a story that she wrote. The author then encouraged the children to develop a story while she was visiting. Abigail showed me the illustrated story she created. However, when I asked her to tell me about the story she wrote, she agreed to this on the condition that we go out together by the tree. The tree has become our space in a way. A space where she can freely move, think, and express herself. It is actually quite a remarkable feeling to witness and experience. Abigail's story was highly creative, magical, and meaningful. She told me about the first chapter she wrote, but she says she wants to continue the story, which I encouraged her to do. I told her I look forward to hearing about chapter 2 by the tree once she composes it. I feel as if I am living a "Tuesdays with Morrie" kind of experience with Abigail. Except Abigail is 8 years old, and not an older adult, in a nursing home, reflecting back about life. Nonetheless, there is something very moving about these moments together by the tree, which reminds me of this powerful book.

Tomorrow, I head back to the doctor's office for more testing since I haven't been feeling well this week. In the evening, Peter and I will be attending Resurrection Children's Center's (RCC) annual auction. There are several families we know who are also going, including Ann. I have very strong feelings about RCC, because it was in this school Mattie found himself, and made lasting friendships. However, visiting a place where Mattie once was is always a difficult experience for me. I have tried to prepare myself and work through these feelings ahead of time before I attend Friday's event.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Your reflections on life here in DC (I’ve seen it in NY, LA, Chicago as well) are very true. We get so caught up in making a living that we lose track of the fact that making a living is not a substitute for LIVING our lives. It should be what allows us to do the things we love with the people we care for. Thank you for sharing the stories from Abigail and Katharina; I have always felt children understand more than adults give them credit for and that sharing our feelings and encouraging them to share theirs is critical for healthy emotional development. “Protecting” our children from feelings, from events, results in children who cannot deal with the events that life throws at us all. Clearly Ann and Bob have done a wonderful job of raising their children to be both thoughtful and open about their feelings and many of us could take them as role models. Today’s practice was very challenging as things came at us in unexpected ways; eventually I found my balance and I sent the energy of my success to you to help you as you go through your daily challenges. I hold you gently in my thoughts."

March 17, 2010

Wednesday, March 17, 2010

Wednesday, March 17, 2010

Tonight's picture was taken last St. Patrick's day! Mattie received these wonderful clover sunglasses and headband, and when he put them on, I thought he looked like the perfect spirit of the day! I can't believe that in just one year's time, my world looks so completely different.

Poem of the day: I am Learning How To Live by Jamey Wysocki

I am learning how to live
In a new way
Since that day
You were taken away
I am learning how to live
With the things left unsaid
Knowing I got to say them
With every tear that I shed
I am learning how to live
By embracing the pain
Knowing that you live on
Through the memories that remain
I am learning how to live
Knowing I will never again see your face
And I have peace knowing
You’re in a better place
I am learning how to live
Knowing you’re in God’s care
It gives me the strength to move on
And makes the pain much easier to bear.


"I am learning how to live." Or am I? Tonight's poem is intriguing. I agree I am learning how to live without Mattie. However, the word learning bothers me. I look upon learning as something that is positive, and something that I take on willingly. I did not choose to "learn" to live without Mattie, it was something that I was forced to deal with. As I see it, I have two choices in life now. I either deal with life without Mattie, or not live at all. That sounds rather black and white I am sure, but taking it down to the most basic levels this is what I am left with. However, I have experienced that through grieving it is very possible to be living, yet feel quite dead or empty inside. It takes great courage to work through those feelings.

It is interesting, over the last couple of days, I have reflected on life in general. Living in the Washington, DC area, people must work rather hard and long hours, just to afford to live here. However, in the process of working hard, it is easy to get stuck. Stuck in the daily grind, the routine, and forget about why one is working so hard in the first place. Before Mattie got sick, I was guilty of this. Going day to day, but not really appreciating what I had in front of me. I always felt that there had to be more to life than this, but really was complacent or simply accepted that this is what all responsible adults had to bear, especially while raising children. Now that Mattie is gone, I must say I question the whole daily struggles we put ourselves through. In a way, dealing with intense grief, has forced me to take a moratorium from life. I am left with the existential struggle of what is our purpose for being here on earth? I could come up with some trite answers to this philosophical question, but I am looking for a deeper or more profound answer.

I would like to share two stories with you. I had the opportunity to be outside Ann's house today, watching her daughter, Abigail, and our mutual friend, Katharina, climb a tree. Abigail and Katharina made a poem up about the tree. Basically the poem stated.... hug a tree when you are scared, and kiss a tree when you are sad. I then noticed that Abigail kissed the tree. Naturally I could only deduce from her poem that she was telling me she was sad. So I asked her. She said that she was sad at that moment, and when I asked her why, she said that she was sad because she was thinking of all the people in her life who have died. She then listed them, one of whom was Mattie. Abigail then told me about a very unique and creative game that she plays sometimes at recess in school. The game involves superheroes in heaven. In this play scheme Mattie is the mayor of the superhero town, and Abigail and Charlotte are the superheroes who enter this world to basically defend the town from the evil forces trying to get in and destroy the town. I am only sharing parts of the story with you, but what this illustrates to me is that death is a very real and complex topic and feeling for children. Unlike adults, where we either turn inward or talk through our thoughts and feelings, children play out these thoughts and emotions. Play is the work of children, and a great deal can be accomplished and learned through play. Abigail's story today made me pause because clearly her friendship with Mattie is a part of her, and perhaps will always be a part of her memory. The beauty of children is they tell you how they feel typically without an ulterior motive, and for Abigail, she was simply stating the facts, and wasn't trying to tell me a story to make me feel better. Ironically though her story did touch my heart, it meant even more to me because it wasn't planned. It just happened.

Later in the afternoon, Katharina, also a buddy of Mattie's, told me a story. She explained that she was creating something out of playdoh yesterday, and wanted to give me her final product. Katharina designed a beautiful necklace, and it had all three of Mattie's favorite colors in it: orange, red, and blue. She said to me, that she thought Mattie would want me to have this. Naturally I put the necklace on, because it was a very sensitive and thoughtful gift. It is during these unexpected moments, where I see that Mattie did touch so many lives, young lives. Yesterday, Katharina and Michael (Ann's son) overheard me talking to Ann about Mattie's upcoming birthday. I was explaining to Ann, that I am trying to plan some sort of gathering for our Georgetown University Hospital family to acknowledge Mattie's birthday. I was explaining that it is hard to plan such an event, or perhaps people would think such an event was unusual because Mattie is no longer alive. With that both Katharina and Michael corrected me. They said Mattie is alive. They pointed to my head and heart. Do I need to say anymore?! Sometimes children are much wiser than we give them credit to be.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am sorry you are not feeling well; grief is exhausting and self care is absolutely critical. I read about how Abigail made Mattie a part of her presentation on Russia. I agree with what she said, that when we remember Mattie in a setting or during something we are doing, he is with us in spirit. I am glad you have found a project to do (can’t wait to see the pictures of the centerpiece) and that you are getting out some and meeting up with friends. Finding your way is kind of like walking a maze filled with booby traps and unexpected surprises both positive and negative. You just don’t know what you will find around the next corner. Be gentle and patient with yourself today as you recover from your illness; I send you my healing energy from practice to help you. I hold you gently in my thoughts."

March 16, 2010

Tuesday, March 16, 2010

Tuesday, March 16, 2010 -- Mattie died 27 weeks ago today.

Tonight's picture was also taken in May of 2007 at Dutch Wonderland in PA. Mattie had a great day with Peter going on every ride that was possible in the park. At age five, Mattie was fearless. You can see the big smile on his face, as he went on a ride that was like a rollercoaster on the water. Though I do not like going on rides, I did like taking pictures, documenting all of Mattie's adventures. At the time I would never have guessed just how much these pictures were going to mean to me.

Poem of the day: People Say by Charlie Brown

People say
Time heals
But it doesn't
It softens the colors
And frays the edges
Of my memories of you
People say
He's better off
Is he?
Of course not
He needs his mom
And his dad
People say
He's with God
Doesn't God have
Enough angels?
I had only one son
My arms are empty
I am devastated
I am angry
I want to cry
I want to scream
People say it gets better
I can't see how
Your support is
A ray of sunshine in a
Grey sky
A whisper of spring
Even in a winter wind
The promise of a rainbow
After the storm
People say
Friends help...
They do.

The poem that Charlie sent me tonight captures the sentiments of the day. A day that marks Mattie's 27th week gone from this earth. Time, does not heal ALL wounds. Not even close. As I have said before, with time comes a lapse in memory, a struggle to remember the specifics such as the sound of Mattie's voice, the beautiful brown color of his eyes, or the sensation of his hugs. Time from my perspective only further robs me of these vital tangibles. It is hard to believe that it is yet another Tuesday!

While I was driving today, I heard on the radio a song by George Strait entitled, "I saw God today." I have heard this song numerous times before, but for some reason the lyrics caught my attention. I think as a parent, perhaps one of the first true times you see God in action or what he is capable of, is when you have a child. On this day, where I am remembering the passing of Mattie, it seems ironic that hearing this song would bring me back to remembering the day Mattie was born. Naturally it is a day Peter and I will never forget. What is abundantly clear to me however, is that through Mattie's death, I feel more deeply than ever before. It is almost as if a protective layer of my skin has been removed, and by doing so, I am sensitive or overly sensitive to just about everything that surrounds me. I have attached the link to this song, if you are curious to hear it:
www.youtube.com/watch?v=q06AvQF5NOw

I had the opportunity to see Ann this morning. We went shopping for different things, but one of my main focuses was picking up items to design Ann's next table centerpiece. This centerpiece will be for her youngest daughter's, first holy communion party in April. So stay tuned for pictures of this creation. Some of you may recall the winter wonderland that I created for her table in December, my current project is to design a spring time garden scene for the center of the table. To me, butterflies, birds, and flowers are perfect symbols signifying the purity of the holiest and most important occasion in a Roman Catholic's life. Or in other words, when a child receives the Sacrament of the Eucharist for the first time. I find taking on these projects fun, and they allow me to step out of my usual day to day feelings for a while, and be creative.

Ann told me that Mattie was thought about and in a way was a part of her daughter Abigail's Country Fair at school. My understanding of this event is that each child is assigned a different Country to study and then creates pictures, booklets, and other representations of the culture to share with others at the fair. Abigail represented Russia quite well, and even brought in my Russian Nesting Dolls to add to her display. When Abigail opened up each of the dolls, the littiest doll had two pennies in it. Abigail was confused by this, and asked Ann where the pennies came from. Ann explained to Abigail that Mattie liked playing with these dolls, and he hid two pennies in them. Abigail then innocently stated to Ann that Mattie was therefore with her today (in spirit) at this event! This was a lovely comment to hear, especially on a Tuesday, when I reflect more than usual on Mattie's death. It is always wonderful to hear stories about how his memory is being kept alive.

I had lunch today with my friends Christine (Campbell's mom) and Ellen (Charlotte's mom). In fact, this was our first book club meeting and we discussed a book entitled, "The Hotel on the Corner of Bitter and Sweet"by Jamie Ford. We had a nice lunch and chatted about a whole host of subjects. We all enjoyed this book, but agreed that the ending was too perfect, and most likely wouldn't be plausible in reality. I love learning about different cultures, and certainly love reading about relationships, so this book had the best of both worlds for me.

However, as the day continued on, I began to feel ill. It came on suddenly, and I hope that it goes away as fast as it has arrived. I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. As many of my readers know, Kristen writes to us every Tuesday. Kristen wrote, "Just a note to tell you I am thinking of you...this Tuesday and every day. Much Love."

The second message is from my friend, Charlie. Charlie wrote, "Being a good chaplain is a fine balance of caring, compassion and a "thick skin." This is especially true for those who take up the challenge of ministering in a hospital environment where as many stories end sadly as end happily. It sounds as though Sharon has managed this difficult balance especially well. I think it is important for a chaplain to express what a loved one cannot but wants to say if that is possible. In this case, prayer in the appropriate places was something of a solace both at the time of Mattie's passing from this life, and in retrospect as well. That's not an easy thing to do. Often we end up either angry at the time and grateful later or the reverse. It is a blessing when it works both ways. I do think you are right and that the place for the support group is Georgetown if that can be managed. If it can, I know that you and those you connect with, will be the ones to make it happen. As I practice today, I will send you my strength and focus for the tasks you have ahead. I hold you gently in my thoughts."

March 15, 2010

Monday, March 15, 2010

Monday, March 15, 2010

Tonight's picture, not unlike the past week's pictures, was taken in May of 2007. On our trip to Lancaster, PA, we took Mattie to the "Choo Choo Barn Train" museum. He loved it! Also right next to the museum was a hotel. A hotel which I will never forget. The hotel was comprised of retired train cars. Basically you could rent out a train car as a hotel room. Mattie got a real kick out of that notion! We did not stay there, but it clearly appealed to people like Mattie, who LOVED trains. Peter snapped this picture of Mattie and I. Most likely because we were a sight together. As you can see in the picture, Mattie was almost three fourths my size, yet he wanted to be carried around because he was tired and had a full day. Despite his being tired, he was always the best hugger, and I think Peter captured that well.

Poem of the day: A Sign by Nancy Lee

The stars and moon are bright tonight
And I look to the heavens for a sign that you are alright
You touched so many lives while on this earth
During your short life starting from your birth
I picture you now touching each star
Lighting them up near and far
I am told
You are in God's fold
I pray daily to God that you have found bliss
And to please help me get through this.

I had the opportunity today to go out to lunch with Mary and Sharon from Georgetown University Hospital. Mary is the lead social worker at the pediatric Lombardi Cancer Center and Sharon is the chaplain for the Center. Some of you may recall that Sharon sat with Peter and I in Mattie's PICU room for five hours straight the morning that Mattie died. Literally she came to the hospital around 4am and stayed with us the entire time. She said a prayer for Mattie before and after he died. Sharon was well aware of my anger toward God at the time, but she still came the morning of Mattie's death. At lunch today, I had the opportunity to thank Sharon for sitting with us, because I can assure you watching a child die, and trying to help parents throughout this horrific scene is not for the meek. Sharon in retrospect was very calming, spiritually appropriate, and respectful. I am also happy she was there to say a prayer to God for Mattie. This was not something I could easily do, and not unlike the rest of the year, when I was unable to do something, someone from Team Mattie usually was there to step up to whatever challenge we presented.

When I suggested that Georgetown establish a support group for its bereaved parents, Mary rose to this challenge. I truly appreciate her willingness to take this on, a service that goes above and beyond her  job description. To me, seeking support at Georgetown only makes sense, since this is where the majority of my day to day support came from during Mattie's treatment. Talking to Mary and Sharon today was special, and seemed natural. Natural most likely because I consider them part of my cancer community. It is very hard for me to open up emotionally to people who haven't walked this painful journey with me. What I verbalized today, which I hadn't for a while, is that in losing Mattie, I lost my son, my role as a mom, and my hopes for the future. Not an easy thing to admit, but recently I see that verbalizing how I feel with others is actually very healing. It doesn't take the pain away or even change my thoughts, but feeling heard and understood does help me reconnect with the outside world. Or at least it slowly takes my inner turmoil, and pulls it out for others to hear. Of course what I am saying is not always easy to listen to, because there are times where I feel very low and question my purpose and reason for living. In those times it takes great courage and strength to pull out of these moments. But as Mary said to me today, I have lived through and am dealing with probably one of the worst things that could ever happen to a person. I wholeheartedly agree!

I would like to end tonight's posting with four messages. The first message is from my friend, Charlie. Charlie wrote, "Mattie's birthday is not only on Easter Sunday but during the Jewish festival of Passover as well. It is our Spring festival, when we celebrate our freedom from slavery and remember those around the world who are still enslaved by poverty, hunger, ignorance, as well as physical and/or emotional slavery. The holiday is filled with symbols and stories and has always been one of my favorites. It is also a holiday when we remember our deceased; the memorial prayer is recited in synagogue on Shabbat, following the Torah service. I have always felt that this was to include our beloved dead in our celebration and to remind us of our link across generations and through memories. I think it is wonderful that the second grade parents wish to plant a tree in Mattie's memory on the campus; what a lovely way to strengthen the memory of his connection to the school. Whenever I hear of a tree as a memorial, I think of the book, The Giving Tree and how it matures along with the little boy of the story. I only regret Mattie will not mature along with his tree, but his memory will, as his friends grow and continue to remember him. I hope you and Peter can continue to bridge the sadness and find a way to support each other through the grief process. I as always, hold you gently in my thoughts."
 
The second message is from my friend and colleague, Nancy. Nancy wrote, "I just finished catching up on the blog. It was just like Susan to send you a note before the meetings. She is a lovely person and did communicate with me during this year of your mourning. I, too, miss our times together professionally and personally. The last few days have been quite overwhelming for the tri-state area. I feel lucky as people were hurt or died in their cars as trees fell on them ever so quickly. The winds were bad and my daughter's family had to go to my son's house for shelter as their power has been out for over a day. We are hoping that it will be restored today. This is just another reminder of the preciousness of life and love for our family. One day all might be calm and the next upheaval and despair. I thank my lucky stars each day for the blessings I receive from our family. I am so happy that you have so much support during your difficult journey. You write so beautifully of the balance, love, and support that you receive from and give to Peter. Death of a child has ripped so many couples apart. Peter and you have something special as was your relationship with Mattie. Your words of love from Mattie's school and his friends does and will always bring a smile to your face. Your son will be one of the "angels" to be remembered for a lifetime. Go gently today and take extra care. You had a busy weekend. I know that these next few weeks will be especially difficult as Mattie's birthday and Easter approach. Both were times of joy and celebration, this year one of memory and grieving. As you have done this year, you will find the correct way for Peter and you to acknowledge April 4th."

The third message is from a former student of mine. Betsy wrote, "I'm so sorry I haven't written lately - you have been in my thoughts often. Life has just been hectic lately and I haven't had much time to sit down. I feel so lucky that you are still writing your blog, because I feel like it opens the doors and allows someone like me, who is really on the outside of your life, to still be able to show you some support even it is just through e-mail. Anyway, I don't have anything profound to say, just wanted to let you know I'm thinking of you. I love that Mattie's birthday is on Easter Sunday. What a positive statement, that he is rising into heaven. And spring is almost here. You've made it through the dreary part of the year, and while the pain of Mattie's death isn't leaving, at least the brighter sunshine and plants and flowers are replacing the cold, dark and dull days of winter. I hope the change in the seasons warms your heart a little bit."

The fourth message is from a colleague of mine. Martha wrote, "Today's blog really touched me! For some reason I felt a turn in your spirit to the "old" Vicki. Maybe the approach of Mattie's birthday will bring new energy to met the future. We need you and want to help bare the load of your grief."

March 14, 2010

Sunday, March 14, 2010

Sunday, March 14, 2010

Tonight's picture was taken in June of 2007, on our trip to Lancaster, PA. Outside of one of the stores we stopped at, was a black and white cow statue. Mattie knew I loved cows, particularly Holstein cows. It was the family joke. My mom even adopted me a black and white cow at a farm in upstate New York one year as a gift. For the longest time I had a framed picture of Daisy, my cow, in our kitchen. So when Mattie saw this cow outside the store, he wanted us to take a picture with it. I could have just shown you the picture of us tonight, but I thought having some context for why the picture was taken would be helpful. 

Poem of the day: FOR JAMIE (my son) - Author unknown

IT HAS BEEN A LONG, LONELY YEAR FOR ME,
AS IT WAS BEFORE IT WILL NEVER BE.
FOR PART OF MY HEART IS MISSING STILL,
AN EMPTY SPACE THAT NOTHING CAN FILL
IT SEEMS THAT EVERY MOMENT I THINK OF YOU, EVERYTHING REMINDS ME OF THINGS YOU WOULD SAY OR DO-AND THOSE THOUGHTS ARE WITH ME EVERY DAY,
EVEN IN MY DREAMS YOU STAY.
I SAW YOU TAKE YOUR VERY FIRST BREATH,
AND I WAS BY YOUR SIDE AS YOU FACED DEATH. YOUR COURAGE AND FAITH ASTOUNDED ME-I WAS SO WONDERFULLY BLESSED YOUR MOM TO BE.
ONE DAY I’LL SEE YOU AGAIN , MY SON,
WHEN MY TIME ON THIS EARTH IS DONE.
UNTIL THEN, YOU’RE A PICTURE IN MY MIND-
OF SMILES, AND LAUGHS, AND BLUE (Brown, in Mattie's case) EYES THE SHINE.
TO BRING FLOWERS IS ALL I CAN DO NOW FOR YOU,
BUT I KNOW THAT GOD WILL SEE ME THROUGH.
MANY THINGS IN LIFE CAN BRING A MOTHER PAIN-
TO LOSE A CHILD MEANS SHE WILL NEVER BE THE SAME.
FOR THE DAYS AHEAD STRETCH ENDLESSLY,
THEY ROLL ALONG LIKE WAVES IN THE SEA.
I ATTEMPT A SMILE TO SOMETIMES HIDE THE TEARS
SOME FOLKS DON’T UNDERSTAND DAILY CRYING FOR YEARS.
BUT WITHOUT YOU, I JUST DON’T KNOW WHAT TO DO,
EVERY SECOND OF MY LIFE I THINK OF YOU.
I PRAY FOR STRENGTH TO HOLD ON UNTIL AGAIN I SEE
THOSE CLEAR BLUE (brown) EYES LOOKING BACK AT ME.
IN THIS LIFE WE NEVER KNOW WHAT TRIALS WE MUST FACE,
AND I BELIEVE MY GOD WILL SUSTAIN ME WITH HIS GRACE.
BUT NO MATTER HOW MUCH PAIN LOSING YOU BRINGS,
I WOULD NOT TRADE THE TIME I HAD WITH YOU,
MY SON, NO–NOT FOR ANYTHING.

As we had to move the clocks one hour ahead today, I couldn't help but acknowledge that spring is upon us. I always loved spring time, for many reasons. I am a warm weather person at heart, I am in awe of how trees and plants come back to life after a long and hard winter, and for the past seven years, spring signified the time when Mattie would turn another year older. Mattie's birthday is on April 4. This year, Easter happens to fall on Mattie's birthday. This has never happened before. Somehow celebrating the rebirth of Jesus and the birth of Mattie on the same day seems very symbolic. As if God is trying to tell me something, because I do not believe it is just coincidence that Mattie's birthday falls on Easter Sunday. Maybe this is a sign to me, or I hope it is, that Mattie too has been reborn in heaven. He is happy, out of pain, and given eternal life.

I will never forget the day Mattie was born, and for the first time today, I associated my daily headaches with remembering Mattie. I never had a migraine headache in my life until I went into labor. Since that time, I do not know a day without a headache. It is just the severity of the pain that separates one day from the other. This daily pain is a constant reminder of the miracle that happened in our lives on April 4, 2002. However, as April 4, 2010 approaches, I am plagued with how to remember Mattie or celebrate his birthday. One of my board members this weekend shared with me a story about a seven year old friend of her son's, who died over 12 years ago. Despite how young these children were, they still remember their friend today, 12 years later. On this boy's birthday, some gather together around the memorial garden his school planted for him, and messages travel through facebook wishing this boy a happy birthday. When my colleague shared this story with me, I found it very touching. It was touching because after all this time, this boy was not forgotten, and I can only imagine how moved his parents are by this outpouring of love each year. No parent wants to think their child who died served no purpose in this world. Keeping a child's memory alive is the ultimate gift I believe you can give grieving parents.

Today I received a lovely e-mail from the "Magic Man." As many of my readers know, the Magic Man is Bob Weiman, Mattie's lower school head of school. Bob taught Mattie magic tricks, performed with Mattie at the hospital and at his walk last May, and in the process gave Mattie the confidence to believe he was special and yet normal. Normal because performing allowed him to forget about cancer for a while, and learn skills that could entertain others. Bob let me know that the second grade parents (remember Mattie would have been in second grade this year) spearheaded a collection to plant a memorial tree in Mattie's honor on the lower school campus. I want to thank Ann Bailey for chairing this project. Ann's daughter, Claire, was in Mattie's kindergarten class. I saw Claire at Abigail's gingerbread decorating party in December. Claire told me then that she misses Mattie and thinks of him often. I am not sure why I was so surprised to hear this out of the mouth of an eight year old, but she expressed herself beautifully and I told her I understood how she felt. Bob let me know that there would also be a dedication of this tree on the campus in the spring. I find it ironic that Bob's message came to me today, as I have been struggling with how to acknowledge Mattie's birthday and his loss in our lives. A tree planted on a campus that he loved seems like a beautiful way to memorialize Mattie, and I have a feeling this will be a tree I will be visiting often in the future. Bob's message meant a great deal to me, as does the contributions of all the parents who are helping make this possible.

Peter and I went out to lunch together. We are beginning to acknowledge the times we feel sad, and are becoming less protected with each other. This may sound strange, but when two people are grieving the loss of a child, it is very challenging for them to turn to each other for help or comfort. There is almost a fear that if you express how you are feeling, this will cause more pain for the other person. We continue to work through this and we had our moments of crying through lunch, and then moments of calm or laughter.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As I read your blog from the past two days, all I could think was how difficult it is to rejoin "the real world" as I have sometimes heard it described, once you are removed from it in some way. Your experience with Mattie's illness is in some ways akin to soldiers who have gone to war and stared death in the face. Those who make it back are forever changed; their sense of what is important and what is not, is very finely tuned in a way that the average person's simply is not. I too have been listening to the St Jude's telethon on the radio and thinking of Mattie every time I got in the car and turned the station on. I heard some of the heartbreaking stories, some ended happily and some did not. It was gratifying to hear that in two days, even in this tough economic time that they raised over 460 thousand dollars. It says that people do care about what happens to others, even those they do not personally know. Often callers said, "no one in my family is ill, I am grateful and therefore I am donating." I always hope that at some point we will find cures and all the stories that are told will end happily. I read about your board meeting over the past two days and how you regretted that you could not give them all the effort you would normally have because of Mattie's illness and subsequent death. I think that was important although difficult for them to hear. Often those who work with us do not understand what kind of time and energy it takes to do what you and Peter did; how much of a sacrifice (however willingly) one has to make to have even a chance at survival. It seems as though you touched both hearts and minds of those you were on the board with and connected at some very deep levels. I am not surprised that one of the members shared some very personal information with you as you are someone who projects the ability to listen and to empathize and it seems as though you were able to help each other. I hope that each day brings a little more light into your life; I hold you gently in my thoughts.

Here is the video for "I just came back from a war" by Darryl Worley. In some ways what he expresses is what I read in your blog and hear from my clients... "I never will be the same." Battling for Mattie as you did is like being a soldier in a way. Thank goodness you had the help and goodwill of many to support you as you did so."

www.youtube.com/watch?v=KwpO8Q1u4Ss