Saturday, May 8, 2010

Saturday, May 8, 2010 -- Mattie has been gone 8 months as of today.

Today marks the eighth month that Mattie has been gone from our lives. Seems like a challenging day in and of itself, but then throw in Mother's day tomorrow, and it is quite the picture of grief here. Somehow on anniversary days like today, that serve as a further reminder of Mattie's passing, I feel the need to post a baby picture. This picture is not one I would typically post because I feel it shows the aftermath on me of 36 hours of labor, an emergency c-section, and being pumped up with all sorts of narcotics to manage pain. Nonetheless, Peter did capture, I feel, the love between Mattie and I right from the very beginning. You can see that Mattie had his little eyes open, and despite being heavily medicated (so much so, that Peter tells me stories about me hallucinating and having slurred speech), I can still recall that feeling of becoming a mother within the hospital. 


Poem of the day: Grief by Rani Turton

Grief, don't stand near my bed tonight
I've had enough and more than I can bear
Last night was the worst: I could feel you
Watching me whilst silently standing there.
Now tell me, grief, are you friend or foe?
What is it about me that attracts you so?
Is it for my beauty, my wit or my fragility
That you stand there clothed in such simplicity?
You knew that yesterday was a hard day.
I had a certain difficult role to play;
Grief, as I suddenly felt you in my room
Ah! I actually felt the weight of your gloom.
Now I know that you are more than a presence;
I even think you sense my absence;
I almost think I'll wait for you tonight:
Grief, please do step into sight.
 
I began the day in what I would call a funk. I wasn't sure what I wanted to do, and for some reason was also affected by the amazing amount of tree pollen everywhere. So between crying and allergies, my eyes are simply swollen. Peter could see that staying home most likely wasn't going to improve my mood, so he suggested we take a walk by the Potomac River, and have lunch outside. I gave him a hard time, but I eventually went on this journey. It took me a while to re-engage and want to talk, but I did throughout lunch. Being by the water is something that I find therapeutic even with the traffic of Washington, DC around us.

When we got home, I began balancing Walk related items and laundry. While I was in our complex's laundry room, I met a woman who was in her 70s. I never saw her before, but she started talking to me. She told me about her three children and her grandchildren. I listened to her stories and her struggles in life. After which, she then asked about me. She wanted to know about my children. Loaded question! I told her I had a seven year old son, who died of cancer. She was visibly shocked, but continued talking. As she was talking she began to cry. She said that in the short time I was talking to her, she could tell I was bright and a kind person (always can use a nice compliment especially when I am down), and how deeply sorry she was for my loss. She then gave me a big hug. She continued talking and encouraged me to think about having more children, since she said that she could tell I was supposed to be a mom. I thanked her for the lovely compliments but told her I am trying to deal with my current loss and therefore making any important life decisions is not easy for me right now. She understood. She told me she used to work in a law office in DC. Every so often a woman would come into the office to meet with a lawyer, but she said the woman always looked sad, or angry, and simply not pleasant to be around. One day, she told me that she got talking with this woman and learned that this woman lost her son seven years ago in an accident. The woman's life was NEVER the same. Seven years later the toll of this loss remained on this woman's face and personality. The interesting observation that this lady made today, was when she said to me..... "you don't look like her. You smile, you listen to others, and you appear happy." She wanted to know how I could appear this way, and yet feel deeply inside? Excellent question, from a complete stranger!!!! The irony is this lady has been in our complex for 20 years. We have lived here 15 years, and yet I have NEVER seen her before until today. So the question is, was I meant to bump into this lady today?! Something tells me.... yes!

At dinner tonight, Peter and I were talking about all sorts of things. I am not sure what got him onto his high school experience, but I heard one story that I hadn't heard before. In high school, Peter was involved with his choir and an a cappella singing group. His school also performed musicals every spring, and he was typically cast as the lead in every musical because Peter really has that good of a singing voice. Any case, one spring Peter auditioned for a part in the musical Pippen. He wanted the part of Pippen in the play, because Peter thought since the musical is entitled Pippen, that therefore meant Pippen was the lead role. Peter was devastated when he wasn't cast as Pippen. Those of you who know the play, know that Pippen IS NOT the lead character! Peter must have looked so upset and dejected, that the musical director (who I hear was a NO nonsense kind of person) came up to Peter and told him that she cast him in the right part and that he needed to have faith in her decision. He did not know what she actually meant, until rehearsals and until he read the play and realized that he actually was given the lead part. Peter was trying to make a point to me that teachers are vital parts of our lives, and they sometimes see things within ourselves that we can't see. Yet they not only see potential, but know how to nurture it, and help it grow. Maybe being an educator myself, hearing Peter's reflections tonight impacted me and the role I have served for years. It is unfortunate that I don't know this musical teacher, because I bet she would have liked to know that she inspired Peter through that play to have confidence in himself and his abilities. Which brings me back to the story I just told you about with the lady in the laundry room. What we say to one another can impact a life for the good or for the bad. Words can have lasting effects, and on a bad day, a kind word can change a person's outlook and feelings.

Later in the day, Ann called me. She was persistent today because I hadn't answered her other calls, and she was worried about me. Naturally I do not want her to worry, so we did land up chatting. She was reflecting on the time she and I spent with Mattie's head of school yesterday, and she said that she and Bob can see happiness in my future. She knows I can not right now, but wanted to know what my reaction was to the fact that others could. What she was trying to tell me is there is hope, there is always hope, and not to forget that. Clearly if anyone else told me this, I most likely would be very upset. But Ann did not tell me this to make me upset. She is telling me this because deep down she truly believes this, and wants me to know that it is okay if I can't see it, or feel it, but that she is here to remind me. She respects that the journey of grief is on my timeline, not anyone else's. Respecting me and my timeline means a great deal to me, because forcing me to do something or feel something I am not ready to do, isn't helpful, but instead brings about further grief.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It is very difficult to return to a place where you were happy after suffering a significant loss and know that the person who you once were, is no more, and will not return. That's not to say you won't recover your focus, your interest and desire to be a part of the university but it will take time and patience. You may also find yourself more sensitive and less willing to dissemble. Death does that to us, it awakens us to feelings we would rather not admit into our awareness. I know this weekend is terribly difficult for you and I won't try to minimize what you are probably feeling. I just want to say that I am so sorry that Mattie could not conquer this disease and therefore be here to spend Mother's Day with you. I do think if you leave yourself open you will have experiences that tell you he is with you in spirit; I hope you receive those messages and that you will share them in Sunday's blog. It sounds like you picked out the perfect tree and location for Mattie's memorial. I am happy to read that Mattie will be with his friends in spirit as they play, shading them from the sun. As you cope with this weekend, know you are in the hearts and prayers of many who care deeply about you. I hold you gently in my thoughts."

The second message is from my colleague and friend, Susan. Thank you Susan for this meaningful message, which got me to pause and reflect on my role as a mother. Susan wrote, "I've been thinking about you alot - probably because my "new normal" in the last (almost) two years has been to start my day by reading your blog. I awakened at 3:00 this morning with thoughts of what this weekend signifies - the celebration of Mother's Day, and how this might be for you. I know that no one can take the pain away for you - it's a long (permanent?) and arduous process, but I just wanted to share some thoughts with you. My definition of mothering includes being a nurturing woman, which is the process of caring for and encouraging the growth or development of something or someone, and providing care and affection. I believe that "mothering and nurturing" is behaving in a manner that makes this place a better, safer, healthier world for all of the earth's children. In my mind, if you are a Mother once, you are a Mother always. It just is. Our hearts tell us so. It's an esteemed title that we WON'T give up. It has permanency attached to it. My two sisters-in-law have both lost young sons, age 18 months and five years old (cancer). They might be the first to tell you they are STILL those children's mothers. No one else will ever be in that role with those children, my two nephews. Children are lifelong (our life) residents in our hearts, permanent fixtures in our daily existence. No matter what. It's forever. And I would like to add one more thought - aren't you still nurturing, mothering, caring for Mattie by caring for ALL children through your blog and your foundation? Haven't you chosen to devote a significant portion of your life to making this a better place for ALL children with osteosarcoma who may someday be treated effectively? Unequivocally, yes! Now THAT'S a Mother! I know you can't physically hold his tiny hands, but emotionally his hands will be wrapped in yours for always, and the future will show us that you have ABSOLUTELY made a difference, both in Mattie's short but powerful life, and in the ongoing work of your foundation. This is part of your legacy even though it wasn't in your original plans. "Happy Mother's Day, Vicki. You truly deserve one of the highest titles that can be bestowed upon a woman. You have my utmost admiration."

Friday, May 7, 2010

Friday, May 7, 2010

Tonight's picture was taken in May of 2008. I captured this picture before Mattie headed off to grandparent's day at his school. Mattie was excited to show my parents his school. Fortunately for me, Mattie liked the whole experience of getting dressed up, and was beaming about the concert he was going to perform in that day. I decided to post this picture because today was grandparent's day at Mattie's school, and I remember how hard the school worked to make this a memorable day for the families. I only attended one event, but it remains with me today.

Poem of the day: Together by Charlie Brown


As I was walking
Out in the air
I saw an older couple
Just sitting there
They looked so happy
So content to just be
I wondered if someday
That would be you and me
We've seen a lot
And been through more
But our love is solid
At its very core
Memories bind us
Some sad, some joy
As we go on without
Our son, our little boy.

I began my morning by visiting the George Washington University, my alma mater. Our Associate Dean generously donated an item to our Walk's raffle, and I coordinated a time to pick it up. It is funny, I had prepared myself for the tough visit I was going to have in the afternoon, Mattie's school, but wasn't prepared to have any feelings about going into the building where I spent many years to earn my doctorate. For me the unexpected is usually what sets me off, and it set the whole tone for the rest of my day. I am very sensitive to places and space and as I was walking into the building I could literally recall my many hours in that building. Specifically I recall being there when the trauma of cancer was not in my life. As I walked up the stairs to the dean's office, I remembered as a student having the energy to run up the stairs, two at time some days. Now just walking up the stairs took mental and physical effort. But I think what set me off especially is I realized that the last time I walked in this building I was a different person. I am NO longer the person I was two years ago. Perhaps it could be said that I have become more sensitive and more introspective, but at the same time I am also more fragile, more emotional, and definitely not as sure and confident about myself or anything for that matter as I used to be. Anycase, perhaps this realization was in the back of mind, but today it crept into the forefront, and it was a bitter pill to swallow.

This afternoon, I met up with Ann and together we drove to Mattie's school to meet the "Magic Man," Bob Weiman (Mattie's head of the lower school). This was my first time back to campus since Mattie got sick. During the drive, Ann was working very hard to talk to me about how my morning went, and even handed me a chocolate chip cookie to prepare me for what I was about to experience. Chocolate is my medicine of choice! As we approached Bob's office, I saw Mary (Mattie's technology teacher). I gave Mary a big hug, and as always it is a pleasure to see her smiling and beautiful face. I then saw Bob and we gave each other a warm greeting. Through Mattie's illness, I had the opportunity to see the depth, sensitivity, and compassion within Bob. He visited Mattie regularly, taught him magic, made him feel connected to his school, and in essence Bob made me happy. Bob made me happy, because I could see the joy on Mattie's face, and the excitement Mattie had about learning magic tricks. In the midst of these visits, Bob and I always had stimulating conversations and for a person trapped in a hospital, this was a very welcomed and needed distraction. I have missed seeing Bob on a regular basis, and naturally I am deeply saddened that Mattie did not get to experience even one more year at St. Stephen's/St. Agnes School.

Bob took Ann and I on a tour of the playground area and offered me three possible locations to plant Mattie's memorial tree. The first location was fine, the second location did not gel with me at all, but the third location spoke to me. It spoke to me because it was near the sandbox, a place that Mattie LOVED deeply, and it was also a location which gets direct sun and it seemed like the perfect place to plant a tree. A tree which could provide shade for his friends (seems very symbolic to me). Bob gave me the choice of a flowering tree or a white oak. I selected a white oak. Not because it sounded good, but because Mattie loved oak trees. Why? Two reasons! The first reason is Mattie loved to collect acorns. I still have his acorn collection on our deck. When Mattie was in preschool he also would visit Kathie, his occupational therapist. Mattie loved Kathie, and in the spring would always insist that we stop by this oak tree near her office before visiting her. He wanted to stop so that he could bring her the perfect shaped acorn as a gift. Needless to say Kathie received MANY acorns over the years. The second reason Mattie loved oak trees is because we learned by the process of elimination that his tent caterpillars only liked to eat oak leaves. Mattie loved collecting caterpillars, and also cared for them through their entire metamorphasis process. So when Bob mentioned an oak tree, I knew this is what Mattie would have wanted.

After our tour of the playground, we went back to Bob's office and talked. I think the emotion of the day and the fact that it is also almost Mother's day has sent me on a spiral downhill. Bob and Ann were expressing how they want me to be happy, or happy eventually. The word happy makes me cry, because I am not sure that happiness can actually ever be achieved again, once you lost your child. Bob has seen me hysterical before, and he always handles it with class and dignity. Bob expressed his confidence in me to accomplish something meaningful and with purpose. Though I cried through parts of our meeting today, in a way, I was able to verbalize things I feel but do not always say. Somehow that alone was important for me to do.

I appreciated Ann going with me and I can only imagine what it is like for her to have to sit there and watch me in tears. Ann has dealt with her brother's and dad's cancer, and now she sees the aftermath of it again with me. It takes a great deal of love to want to intensely experience cancer for a third time, especially when it would be easy to walk away, yet there she remains with me. I spent some time this afternoon in Ann's garden. In a way being outside and quiet was needed.

As I was driving home, I was adjusting the necklace I had on. I have had this necklace for years, and what I like about this necklace is has a beautiful sun face pendant. This necklace has special meaning to me now, because it reminds me of Mattie's "Mr. Sun." Before I knew what was happening, I could feel beads falling everywhere as I was driving. The whole thing broke, and since I was driving, there was nothing I could do about it. I was already in a fragile place today, but the necklace breaking sent me right over the edge. To me it was symbolic of the loss of Mattie, or a life falling into pieces.

I received a beautiful e-mail tonight from Mary. Mary is a RCC mom and a friend. I included her e-mail below so you could read it yourself. I was very touched that she and her daughter went around town to local stores posting up our Mattie Miracle Pediatric Cancer walk flyers. Her daughter Emily considered Mattie her "friend." Mind you Emily really was never in preschool at the same time as Mattie, yet she did visit him in the hospital several times, and to her Mattie is important and has no trouble enlightening others to this fact. Got to love her convictions and her sensitivity! Emily's story touched my heart today and brought a smile to my face.

As we head into the weekend, all I can say is that my head and heart are heavy! I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "As I've said so much to organize and to get done for an event of this size. It is a good thing you are such a talented coordinator or this would not work. I know you've complained about both your memory and your ability to focus but I think you are doing better than you believe. This is really a lot of "balls" to keep in the air all at once and you seem to be managing them well. I really admire what you are accomplishing here and I am sure the walk will be all that you want it to. I think it is lovely that you and Peter were able to meet for lunch and discuss all the ideas you heard in the morning while you both had the energy and enthusiasm to work them through. And I have to say how happy I am that you are able to laugh; humor is what carries us through so many difficult and stressful situations and so I am glad Carolyn has helped yours has return. I hope today is another productive day as you continue to count down to the march. I hold you gently in my thoughts."

The second message is from my friend, Mary. Mary wrote, "Emily and I had a nice morning delivering flyers. Even at her young age, she knew we were doing something for an extremely important cause, and delivering the flyers really made her feel like she was doing something good. Emily had a nice conversation about Mattie with one of the retailers at a Framing Shop at Bradlee. He was impressed with her conversation about “her friend” Mattie and immediately taped the flyer right on his window. You remember that Emily always called Mattie “her friend” even though she barely knew him. She told the manager of the store that Mattie was a good boy. I’ve been recalling the spirit of when we delivered the flyers last year for Mattie’s March. It was all about the fight, and it brought us to tears to tell his story. This time around, it was even harder. It was yet another reminder that Mattie is not around any longer. It’s still about the fight, but so very, very different. I know that you had an emotional day today and will have a very emotional weekend. I want to wish you an early happy Mother’s Day. Please remember that you were an incredible Mother to Mattie! He loved you so much!"

Thursday, May 6, 2010

Thursday, May 6, 2010

Tonight's picture was taken in May of 2009, at the March for a Mattie Miracle. I find it ironic that last year's walk was held on May 9. This year, May 9, a year later, Mattie is gone, and it happens to be Mother's day. This picture was taken during the March's program. Mattie was getting hot, and fortunately someone was smart enough to bring an umbrella and gave it to Brandon and Robbie to protect Mattie from the sun. I love this picture, because you can see Brandon (Mattie's big buddy) and Robbie (one of Mattie's favorite volunteers) were working hard at keeping Mattie engaged and calm most likely while Peter and I were talking in front of him. In typical Mattie fashion, his shoes came off for the event!


Poem of the day: Misunderstandings by Charlie Brown

Sometimes things are said
That are not really meant
Or a comment is mistaken
And a wrong message sent
When this happens between
Two who really care
It is very important
To make sure you clear the air
Sometimes it doesn't matter
Who says "I was wrong"
Just make sure you do it
And don't wait very long
Because you never know
What's coming up around the bend
And few things are sadder
Than the loss of a good friend.

I want to thank many of you who e-mailed us over the course of today with such positive feedback about the NEW logo for the Foundation. Today was a day of connections, and the irony is most of them were done without ever leaving the house. My days are filled with Walk ideas, planning, and the execution of tasks. However, what I have experienced, especially today, is the power of feeling part of a team. A team where everyone is working together for the ultimate goal, which is a successful walk. I have always been a collaborative person, and for some reason today it just clicked with me. I felt as if I was part of something, something that could potentially make a difference.

I started my morning talking to Tamra. Tamra is a friend, Mattie Miracle board member, and a co-coordinator of Walk logistics. Tamra is out of town, helping her daughter pack up her college dorm room for the summer. However, Tamra knew I had some logistic questions, and found a way to connect with me. Many ideas were generated from this phone call conversation, and this stimulated other dialogues that I had with Christine (our Registration Coordinator), Liz (helping brand the Foundation), Alison (on the steering committee for the Walk), and Ann. I actually enjoyed hearing their ideas and different perspectives.

At around lunch time, I decided to see if Peter wanted to get out of the office, into the fresh air and have lunch together. Typically Peter works through lunch, but today, we were fortunately able to meet. It was a beautiful weather day in Washington, DC, and we sat outside at a restaurant, which Peter has told me about but I have never been to. At lunch we talked more about the Walk, the ideas that I had been hearing about during the morning, and the plans for the rest of the day. By the time Peter gets home from work at night, we both seem to be tired. So meeting during the day, when we both had more energy made for a very engaging and productive dialogue.

After lunch, I walked back home. On my journey, I happened to notice a couple in their late seventies having lunch together outside at a restaurant. They were the only couple sitting there. The woman had a sun hat on, and she caught my eye as I was walking by, because she smiled at me. The couple did not seem to be talking with each other, but clearly they looked very happy and content in each other's presence without saying a word. As I looked at her, I smiled back, and I wondered what has this lady seen in her lifetime? Has she seen pain and suffering like me, which is possible, and if so, will Peter and I look like this couple as we age? They seemed happy and at peace, a place that Peter and I are MOST definitely not in.

This evening as I write the blog, I am periodically checking e-mail. I am having another funny e-mail dialogue going back and forth with our friend Carolyn. Carolyn is in charge of the raffle at the Walk, and somehow by the end of the day, we both need a good laugh. Fortunately we never run out of material, and I joke with Carolyn that she supplies me with a much needed dosage of humor therapy!
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It seems things are moving along well for the walk. I am not sure that everyone realizes just how much planning, coordination and work go into such an event. Most of the time people just show up and assume things that are supposed to happen will do so. They have no idea what goes on behind the scenes and what it takes to make things go smoothly. We get a glimpse of it from the blog and I have to say I have great respect for you and all those who put in the many, many hours of work to make this happen. I really like the new logo, it is simple and inspiring and it incorporates all the things that are so important to you. Finally, I want to say that I love your mom's poem. She is a brilliant writer and she sees things so well and frames them so beautifully that I can "see" much of what she writes. As I practice today, I will send my positive energy to you to help you to keep going on your projects. I hold you gently in my thoughts."

Wednesday, May 5, 2010

Wednesday, May 5, 2010

Tonight's picture was taken in May of 2009 at the March for a Mattie Miracle. Mattie is pictured with his cousins, Sydney, Will, and Nat. Mattie's cousins live in Boston, but over the course of his illness, they came often to visit him in the hospital. Despite however Mattie was feeling, he enjoyed these visits, and his cousins filled his room with energy, laughter, and made him feel like a kid again. It is not easy for a healthy child to enter a PICU environment, much less to see a family member contending with cancer. Mattie's cousins were very courageous, and never flinched or treated Mattie differently. In many ways, one of the greatest lessons I learned through Mattie's cancer fight, is that children are amazing. They have the gift and ability to be able to see through the exterior trauma, and appreciate the things that are important. Mattie's cousins played with him, talked with him, and made him feel included and important. It is simply hard to imagine that Mattie's smiling face is no longer with us this year.

Poem of the day: The fog of grief by Charlie Brown


I know where I am going
Or do I?
I've been here before
Or have I?
Now I know what they mean
When they say,
"I am lost in the fog of grief"
You cloud my thoughts,
I am like the child
Who blindfolded,
Is spun around
Until dizzy.
Confusion dogs my steps
And I cannot
Find my way along
Once familiar streets.
Perhaps the reason
I can no longer
Navigate these streets
Is that none of them
Any longer,
Lead to you.

I had the opportunity to have lunch with Christine (Campbell's mom) today. Christine is coordinating the registration process for this year's Walk. Christine came to lunch armed and ready to talk about the logistics of registration. We are lucky that Christine has run the registration process at many school events, and this experience was evident as we were discussing the issues at hand. Christine, like many of our dedicated Walk volunteers, perform their roles with dedication, grace, and amazing enthusiasm and energy. Peter and I feel very lucky to be surrounded by this incredible community of people. It is hard to believe that out of such great tragedy in our lives, we have come to see the true inner beauty of people.

After I met with Christine, I drove to see Ann and we discussed the registration process and updated her on how well things were progressing. It is funny how much Ann and I can say to each other in a very short period of time.

Later in the afternoon, I had the opportunity to connect by phone with Alison. As many of my faithful readers know, Alison helped coordinate Team Mattie on many occasions, and was also our Mattie Fund manager. Since Mattie's illness, I would have to say I avoid phone conversations. I am not sure why, other than Mattie couldn't stand me talking on the phone. It seemed to provide him intense pain, and naturally it distracted my attention from him. He trained me well, and to this day, being on the phone is not my desired way to communicate. I prefer seeing people in person. However, Alison and I have been through a lot over the course of Mattie's illness, and therefore talking to her on the phone seemed very natural. As Charlie's poem indicates, sometimes I do walk around in a fog. It isn't intentional, but it does happen, and one of the by-products of being in such a fog is that sometimes you can hurt someone else's feelings. Unintentionally, but nonetheless it happens. Losing Mattie has freed me to have more open and honest communications with people, and today I had the opportunity to chat with Alison and apologize for one of the e-mails I sent to her. This is the beauty and downfall of electronic communication. It is quick but in being quick, sometimes things can come off as being  curt and insensitive. I guess my point to this story is the importance of reaching out to friends when you sense something isn't right. Alison had long since moved passed the issue, but I could not. To me when you care about someone, making things right is very important, and can only further the depths of a friendship. Living through cancer has enabled me to understand what is important in life, and what things are worth pursuing, and at the end of the day, a friendship is always worth nurturing.

Tonight, I had the opportunity to see the final revision of the NEW Mattie Miracle Cancer Foundation logo. Thanks to Liz Chiaramonte, our friend, and last year's walk chair, we were connected to a wonderful graphic artist, Kristen Johnson. Kristen volunteered her time, and generously shared her skills with us, and designed a logo that in my opinion captures Mattie's favorite colors and memorializes his "Mr. Sun." It is a whimsical and spirited logo, and it is now posted on the blog and at the Foundation website for all of you to see. We can't thank Liz and Kristen enough for the countless hours of work that went into this project. A project that sets the tone and illustrates the direction of the Foundation.

As the week progresses on, I have been invited back to Mattie's lower school campus on Friday. I will be meeting with the "Magic Man," Mattie's head of school, Bob Weiman. Bob and I will be discussing where the memorial tree for Mattie will go on campus. The tree ceremony will take place later in the month, and I am so grateful to the generous donations that second grade parents (the grade Mattie would have been in this year) provided to the school, in order to remember Mattie in this very touching manner. I have no idea what walking back on campus will feel like, but most likely while doing it I will be fine, because I noticed with me, I always experience a delayed emotional reaction. Nonetheless, I am honored to be meeting Bob, and to have the opportunity to discuss Mattie's tree.
My mom wrote to me today, and sent me the poem below. I hope you enjoy it as much as we did. 

___________________________________________________
Touched by an Angel by Virginia R. Sardi

When I think of that impish grin and fourteen carat smile so bright,

I was touched by an angel for a brief second of sweetness last night,
The sun, moon, stars and planets met their match in your brilliance it seems,

I was touched by an angel that exists not only in dreams,

Days were sparkling adventures, as you charted the course of fascinating things we could do,

I was touched by an angel that made life entertaining and serendipitously new,
That spark of creativity with its unpredictable eruptions kept us mesmerized under your spell,

I was touched by an angel enchanting us with his magic out of Bob’s bag of tricks that he did so well,

You were blessed with mental energy, challenged what didn’t seem right,

I was touched by an angel thoughtful, compassionate and bright
Unbounded by nature, you aspired to make the world a better place,

I was touched by an angel who brought love and hope despite the high hurdles he had to face,
You were chosen, we know not why, to share the legacy of your meteoric life to its untimely end,

I was touched by an angel who brought strangers together to become lifelong friends,
On my walk through the hills this morning I spotted a beautiful bird on the wing

I was touched by my angel and I could feel my heart sing
__________________________________________________

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As you said, Tuesdays are always a challenging day, not that any of them are really easy right now. At least you are out, meeting with people, moving forward with the foundation and the walk. Those two things are challenging in their own right and so it is not really surprising that you did not have the energy or focus to figure out where you were going. I am glad that you called Peter and that he was able to "come" to your rescue and help you figure out where you were supposed to go. I do want to tell you that you and Peter are very unusual (in a good way). Normally, once a child leaves the hospital in either a positive way or by death, it is very unusual for the family to continue to reach out to the staff and include them in proposed events. I believe that they are open to this because of the special people that you and Peter are; they have come to value you as more than Mattie's parents, but also as friends and advocates for improved care and treatment. This is a very special gift. As you continue to work on the planning of the march and the foundation, I hope your efforts bring you some satisfaction and serenity. I hold you gently in my thoughts."

Tuesday, May 4, 2010

Tuesday, May 4, 2010 -- Mattie died 33 weeks ago today.

Tonight's picture was taken in May of 2009, at The March for a Mattie Miracle. This picture was taken at the end of the event, and by that point Mattie was exhausted. However, Mattie's trusted friend, Zachary, was right next to him. Zachary's mom captured this photo, and what I love about it, is it shows two friends sitting side by side, and they are clearly comfortable with each other. As you can see, Mattie was holding his cup filled with tent caterpillars, and Zachary was showing him something on his mom's phone. Mattie met Zachary during his first year of preschool at Resurrection Children's Center. They were instantaneously attached to each other from the very first day of school. In fact, they were inseparable throughout the two years they were in preschool. They understood each other, were loyal to one another, and what I learned was their friendship was so meaningful that even cancer couldn't sever it. What you need to understand is that when Mattie was well, he and Zachary had a very active relationship. They would run around, and do many physical activities together. When Zachary first came to visit Mattie in the hospital, I was worried about how the boys would relate to each other, since Mattie was wheelchair bound. I wasn't sure how they would play together, since Mattie clearly couldn't run around like he used to. What Zachary showed me during that visit, was the important thing for him was connecting and playing with Mattie in whatever capacity Mattie could participate. Zachary sat with Mattie and built legos, they greeted all visitors and nurses who entered Mattie's room, and they simply chatted with each other. I learned a great deal from these seven year olds that day. Over the course of Mattie's preschool years, I spent a great deal of time with Zachary, and if there was a child I knew quite well, other than my own son, it would have been Zachary. Zachary showed me what true friendship was about that day in the hospital, and there are times even today when I think about Zachary and his powerful connection with Mattie, and I cry. This special kind of bond doesn't happen often in life, and I can't help but wonder how Zachary is doing without his good friend Mattie.

Poem of the day: The Math of Grief by Charlie Brown


Here is another Tuesday
I add another week
To the date
Since you’ve been gone
One full moon a month
So many days
All moving away
From your presence.
And the subtraction?
That’s easy
All the things you took
When you left.
Butterfly kisses
Big bear hugs
Little boy enthusiasms
All the remaining “firsts”
That should have happened
And now,
Never will

In a way, my life has become like a lesson in basic mathematics. Each Tuesday, I practice the art of addition, adding up the weeks since Mattie's death, with this week being week 33. Whereas each day I get a reality lesson in subtraction, as I think of the countless things that have been subtracted from my life since Mattie's death. When you look at my days and weeks in this very simplified manner it illustrates that my balance sheet is in the red.

I spent a good portion of the morning doing Walk related items. Later in the day, I met Ann for lunch. Emotionally for me, Tuesdays are challenging days, and after lunch when I got back into the car, I literally got myself totally lost. This is one of my major downfalls, I am directionally challenged. Though I was on a street that I have been on before, I some how got myself pointed in the wrong direction, and one bad turn, led to many many more bad turns. Until I finally realized I had to stop because I was very lost. I have found myself lost on many occasions during the last couple of weeks, and I do not even need to be driving. Two week ago, I was taking the Metro, and got off at a stop I have been to many, many times. However, this particular time, I exited the Metro station in a different direction. As I took the escalator to get the street level, I realized I had no idea where I was. In those moments, I can't even think through this problem. This is one of the many side effects of grief. Instead of panicking, which I can easily do when I get lost, I called Peter. Poor Peter is used to my calls for help! He answered the phone that day at work and I said "I got off the train and I have NO idea where I am." He started laughing, because through the phone lines he had no idea where I was either. But he talked me through my confusion. That is exactly what it is, confusion and anxiety, and this happens easily now because I think in many moments my emotions are frayed and the end product isn't pretty.

I headed to Georgetown University Hospital later in the afternoon because I had a meeting with Denise, Mattie's social worker, and Katherine, the HEM/ONC nurse educator at the Hospital. Katherine is coordinating a Hospital table at the Walk, in which nurses and other support staff can interact with adults and kids and provide information, answer questions, as well as have some hands on activities. Also at the meeting were two of Mattie's HEM/ONC nurses, Jenny and Nicole. It is always wonderful to see these fine women, and I am honored that they continue to think about and support us. This was a community that was very hard to say good-bye to in September of 2009.

After the meeting, which went very well, I had the opportunity to chat with Denise. Though Denise was Mattie's social worker, she continues to take a personal interest in how Peter and I are doing. Denise and I discussed the grief that we are experiencing. I completely agree with her, this is traumatic grief, but it isn't just one trauma we have to recover from. It is instead multiple traumas, for example, the trauma of Mattie being diagnosed with cancer, the trauma for living at the hospital, the trauma of going through chemotherapy and surgeries, the trauma of seeing Mattie unable to walk and take care of himself, and of course the trauma of his death. The grueling hours leading up to his death are enough to wreak havoc in our lives, but when you add up all these other traumas, it is a wonder how we are able to function at all. Denise was concerned that perhaps I set some sort of unrealistic expectation for myself, perhaps that I would be feeling better by now, or that we should be further along in this process than we are. I told her that neither one of us had such faulty notions, but that I understand that others in my life may have them for me. She then spoke to me about the myths and facts of grief, especially traumatic grief. In essence she let me know that advice from other people, and meeting their timelines, is not what is important here. The grief process is just that, it is a process and it doesn't look the same for each person. I found our dialogue with each other very helpful, and if confirms my feelings that returning for support from a place that gave it for over 15 months makes sense.

I would like to end tonight's posting with four messages. The first message if from Mattie's oncologist and our friend. Kristen wrote, "I can hardly believe another Tuesday is here and to quickly follow is Mother's Day. For you Vicki I can only imagine your thoughts as you near Sunday. But I want to remind you...that you are a mother, in every sense of the word. Through your work you continue to provide important lessons for hundreds of your faithful blog followers. You teach us all patience and perseverance. You continue to teach us hope and love. You nurture us and gently remind us of what is important in life. I will always think of you as Mattie's Mom, Vicki. Thinking of you both, Mattie's Mom and Dad on this Tuesday and everyday."

The second message is from my friend, Charlie. Charlie wrote, "Monday was certainly both a rewarding and challenging day. I know you made a huge impact on your students, whether you were a graduate instructor or the student took a class with you as an undergraduate. I think it was good for you to hear how you influenced your former students, how much inspiration they drew and continue to get from you and I hope you find a way to go back to teaching again, since you have so much to share and you are a great role model. Going into Hallmark and seeing all the Mother's Day cards and other things had to be very painful for you; perhaps some day you will again have a child who will send or make you a card for Mother's day. In the meantime, you remain a mother although Mattie is here only in spirit. As we go forward into May and the countdown to the march continues, I hope all your plans work out as you wish. I hold you gently in my thoughts."

The third message is from my friend and colleague. Nancy wrote, "Yesterday's blog was so filled with affirming statements, even the tearful ones. Affirming in that you are missing Mattie, in a different way, looking at the Mother's Day card section. I can only imagine what it must be like to not hear and see him this Mother's Day. The reality is you will be together, just in a different venue. I imagine the chimes will ring or some force of nature will let you know that Mattie sends you his love and wants you to know that you will always be his Mom. I don't know whether it's time for a full moon this weekend, yet, Mattie Moon is always in my thoughts. I was so glad that you went to Honey's luncheon so that you could experience the appreciation of your former students, too. You have been an inspiration to so many and you know that I consider you one of my mentors as well. I don't know if you know of Muriel James, a transactional analyst. Well, many years ago I had the privilege of being with Muriel at an International Transactional Analysis Conference, in Calgary, Alberta, Canada. Her work focused on reassessing our Parental Ego State. As you remember we have two parts to this state; the nurturing parent and the critical parent. Muriel was updating her theory to expand on her initial concepts. In it, she stated our parent is combined of all other kinds of experiences and teacher, clergy, any influential person in our life belongs on either side of this paradigm. You , Vicki, embody a beautiful addition to anyone's Nurturing Parent Ego State. You give and give to all you encounter and Peter is your gentle partner. I am so glad that you have each other to lean on during this ordeal. The Foundation and the upcoming walk are a perfect place for both of you to continue to express your love and tribute to Mattie. In another blog, you said that you don't understand the reason that Mattie was taken. I don't know if that question will ever be answered satisfactorily for either of you, yet, each of our loved ones gives us a Gift with their Passage. Mattie's gift to the universe is his courage and curious nature which helped many, especially himself, endure this disease until the end. His other Gift of Passage is his parents ability to transfer their grief into a positive energy to help other families during their fight with osteosarcoma. What a beautiful way to give back to the universe! Vicki, I think of all of you often and read the blog many times during the week. I find that I am reemersed in writing to you, especially on Tuesday. I send you love, a big hug, and friendship as you navigate this day. My best to Peter and know that you will be in my thoughts this Mother's Day."

The fourth message is from Rebecca, who is the wife of Mattie's music teacher at SSSAS. Rebecca's message brought a smile to my face, and it is nice to know that Mattie is remembered. Rebecca wrote, "My husband, Matt Gehlhoff, was Mattie's music teacher at SSSAS. Although I never knew Mattie, I followed his story and was so saddened when I heard he passed away. Although I can never know the pain you are suffering, I can imagine that there is fear that he will be forgotten by others. That is why I decided to write tonight. My husband Matt received a gift from Mattie at the end of his kindergarten year...a pink flower in a hand painted pot. We let it sit in our house for a while, then we decided to plant it in the corner of our garden with some other annuals. We didn't expect it to come up the next year, but amazingly it did. I thought it was neat that it returned and put it out of my mind. Well, this weekend, on our way out to weed and replant our annuals, there it was again. I don't know a lot about plants, never had much of a green thumb, but I'm pretty sure this plant shouldn't be coming up every year. I attached a picture of it for you... it is the big robust pink plant on the corner. Every time we see this strong plant returning year after year, we think of Mattie and his courage, his strength. I wanted you to know that Mattie won't be forgotten."

Monday, May 3, 2010

Monday, May 3, 2010

Tonight's picture was taken in May 2009, at the March for a Mattie Miracle. I love this picture because it captures the excitement and happiness of that day! I did not take this picture, it was actually captured by my friend, Christine. Her son, Campbell is behind Mattie's wheelchair pushing it. Also in the picture, is Mattie's "girlfriend," Charlotte, and his good buddy from the hospital, Robbie. If you look closely, you will see Mattie is holding a cup! Want to guess what was in the cup? If you guessed 10 tent caterpillars then you would have been correct! Mattie helped nurture these caterpillars, and I am happy to say they transformed into 10 moths that were released on our deck. In a way, it is hard to believe one year later, as we plan the Foundation Walk, the tone for me is so different from year. It is different because I have experienced first hand the power of cancer. Cancer is the culprit that took my son from me, and therefore my motivation for doing the Walk this year is completely different. Peter and I want to help other children and families going through this battle, and with time, I believe that the convictions and energy I had for helping Mattie will be redirected toward helping advocate and support others through their cancer journey. For me the MMCF Walk is just the beginning of this new direction in my life. Or at least this is what I am hoping.

Poem of the day: Bonded by Charlie Brown


We are bonded
A husband and wife
In love and faith
To each other
When we said
In sickness and
In health
'Til death
Do us part
Who could have
Imagined
It would be
Our son
We would see depart
We remain bonded
A husband and wife
Together with broken hearts

Today I had the opportunity to connect by e-mail with Sammie's mom, Chris. Many of my faithful readers know that Sammie was the beautiful 12 year old girl who died a month after Mattie from osteosarcoma. I asked Chris if she would send me a picture of Sammie, because I would like to  remember her at the Walk this year. Chris sent an amazing picture of her daughter, and when I looked at it, it was almost impossible to imagine that this vibrant individual is no longer with us. I am honored to have Sammie's photo and I feel seeing pictures of children who have died from osteosarcoma make a powerful statement. More so than any words I could deliver. After seeing Sammie and Mattie's faces, in my opinion, it is hard not to see that something must be done to address pediatric cancer in this Country. Sammie and Mattie, and many others who have been struck down by pediatric cancer are our constant reminders as to why such a Walk needs to happen, and why children with cancer need our financial and emotional support. Our children deserved a chance to live, but unfortunately because of the lack of funding given to pediatric cancers, our children are left to battle cancer with treatments that are over 20 years old.

Though Chris lives on the West Coast, we experience and feel similar things. It actually makes me feel that I am not alone at times. We both realize that Mother's day is fast approaching, and we just do not know how to handle this either. I was at the Hallmark store today, and when I passed through the Mother's day card section, I began to cry. A day that should be so happy, a day that may be the most celebrated "flower" day in the Country, is a day that now brings me great sadness. It is now a day that reminds me that I was once a mother, but am no longer.

This afternoon, I was invited to attend a retirement party of one of my mentors, Honey Nashman. Honey has been working at The George Washington University for 43 years. Honey received many tributes today from university administrators, faculty members, students, and alumni. It was a very touching and powerful event. In fact, the DC City Council passed a resolution that May 3, is hereby Honey W. Nashman Day in Washington, DC. Honey is an outstanding educator, but what captures you about Honey is her personal, warm, compassionate, and inspiring demeanor. As many of her students stated, in Honey's presence they feel empowered to reach their goals, because they know she has confidence and faith in them. Honey has served as an excemplary role model for undergraduates at GW, has created a well recognized human services program, and has instilled the importance of service learning into the curriculum, and within the University community as a whole.

At the event, I had the wonderful opportunity to see many of the students I taught over the years. They have all since graduated and are now working professionals. In fact, all of Mattie's babysitters were former students of mine, and I had the opportunity to see Emily tonight, one of Mattie VERY first babysitters. Emily stays connected with us and she is helping us with ways to electronically promote the Foundation. However, a former student came up to me tonight and wanted to thank me for being her inspiration. That caught me off guard, because I only taught one undergraduate course a year, unlike the numerous graduate courses I would cover in a year. She wanted me to know that she decided to go to graduate school to become a mental health professional because of me. She wanted me to know how much she appreciated me as her professor, and how much she has appreciated getting to know me through the blog. Needless to say, I was very honored. Another former student came up to me and asked about Mattie. She was unaware of the fact that he developed cancer and died. So clearly she was quite surprised by my response. I then stitched the topic and asked her where she was working. She told me she was only working part time because she is raising her two children. The way she told me this, made me feel as if, she thought I would be disappointed in such a decision. Since I sensed that, I stopped her and told her she is doing what she is supposed to be doing now, raising her children. She will have a lifetime ahead of her to work full time, but only one chance to raise her small children. Having lost a child to cancer, I can say without regret that I am happy I was Mattie's full time mom. Yes I was a professional as well, but only worked in the evenings, after Peter got home. At the time it was hard, but I have no regrets about the fact that Mattie was always my first priority.

Reconnecting with Honey's students was a pleasure tonight. They are all individuals who are passionate about helping people, who follow their convictions, and who are true change agents in our communities. You have to admire these young minds and hearts, and it was special to think that I perhaps impacted them in some way.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It has to be so hard to read all this material and try to distill out the essence of what you want people to know. There is just so much to read and right now I suspect, in terms of children's osteosarcoma, much of it is not very positive. I hope that you and Peter can find some satisfaction in getting all this done. You have set yourselves an almost herculean task with the march and the foundation and I pray that they are both what you want them to be. One of the things facing you and Peter going forward is to find new rituals for your weekends. I am not suggesting you forget (as if you could or would) what you did with Mattie, but you need to find a way to reclaim that time in a way that is meaningful and perhaps brings you together. As I practice today and try to put all the pieces together, I will send you the energy of that effort to help you with your efforts to bring your "pieces" together. I hold you gently in my thoughts."

Sunday, May 2, 2010

Sunday, May 2, 2010

Tonight's picture was taken in May of 2009, at the March for a Mattie Miracle. At this event, Mattie performed magic tricks with "the Magic Man." Otherwise better known as Bob Weiman, Mattie's head of the lower school. Bob visited Mattie quite often at the hospital and at home, and during their times together they played and also performed magic. Bob gave Mattie a handcrafted magic bag, and during each visit, Bob would teach Mattie another trick. Mattie was then able to keep the materials to perform the trick and he always enjoyed adding a new trick to his collection within his bag. Mattie loved learning magic, because it made him feel unique, special, and normal. Mattie had numerous magic performances at the hospital for his nurses, or really anyone who would watch him. In tonight's picture, Mattie and Bob performed a trick called the Peanut Butter Booger Trick. Mattie clearly liked the trick and the trick's name, but I know he would have been honored to learn that Bob unofficially calls the trick the "Mattie Brown"now. You can also tell from the photo that there is an umbrella over Mattie's head to protect him from the sun that day. The person holding the umbrella, throughout the ceremony and the magic show was none other than Mattie's big buddy, Brandon. Seems to me there is something very symbolic about having your good friend shade you with an umbrella.


Poem of the day: Legacy by Charlie Brown


I am trying
To make this be,
A worthy legacy.
Can you see?
I am working
Through my fear,
To pull this together.
Can you hear?
Watching as I work
With so much care,
To make this happen.
Are you there?
I hope you know.
I hope you are.
Guiding me always
You are my star.

Today was another day at home, in front of the computer, trying to put thoughts together for posters at the Walk. Peter and I sat down together during various points throughout the day, because I felt scattered and unable to consolidate what I was trying to say. So we spent a lot of time brainstorming things together. However, the tensions were high for both of us, and I think trying to plan the Walk and also discuss cancer related facts are hard especially when you reflect on the fact that we only lost Mattie seven months ago. Combing through facts about causes, survival rates, treatments, research, and deaths from cancer can be overwhelming at times. Trying to convey a ton of information in short sound bites to place on a poster is also extremely challenging, and because I have so much wrapped up into the success of this walk, I can easily get overwhelmed, and then freeze in terms of my productivity.

Charlie's poem, Legacy, captures many of the sentiments I am feeling. Imagine trying to create a legacy for your child? This is not something I ever thought I would be doing. After all, as adults we seem to work hard on generating our own accomplishments and successes, in order to create a legacy that our children can be proud of. I never thought, I would have to face the daunting task of creating a legacy for my seven year old who died from osteosarcoma. I am aware of the fact that Mattie touched the hearts and minds of his family and friends, but I continue to search for the true meaning in Mattie's death. Mattie died for a purpose, yet I just do not understand the reason, the purpose, or the legacy yet. But I know they must exist, and each day I plod along in deep search for them.

As Peter admitted, he had a hard weekend. I think weekend mornings are particularly hard for him cause this was usually the time that he and Mattie would bond together over an activity. When you feel such intense pain and sadness, I assure you it is very hard to get motivated to do anything, much less have the energy to focus and complete a task. By the end of the day, both Peter and I were wiped out emotionally and intellectually. Peter and I are a strong couple, and at the same time we are a broken couple. A broken couple, because when you lose your child, you lose a part of yourself as well as part of the foundation that solidifies the union of your marriage. We grieve the loss of Mattie always, but we also grieve the loss of being parents and how this bonded us together each and every day.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It sounds like good progress is being made on all fronts. While the internet is helpful, it is a two sided sword and you can easily find yourself overwhelmed with the amount of information that is available with just a few clicks. Although time is short, make sure you take breaks and do some self care for yourself. Take a walk around the block, drink some tea away from the computer, or do anything else that you feel relaxes you. Doing that will make your time when you come back to your project more focused and productive. The breaks don't have to be long to be helpful. As I practice today I will send you the energy to help you as you continue your work; as I work on my balance, remember to balance yourself as well. I hold you gently in my thoughts."