Saturday, December 12, 2009

Saturday, December 12, 2009

Tonight's picture was taken during the summer of 2007. Mattie was taking swimming lessons and learning to become comfortable in the water. Being in a pool did not come naturally to Mattie, he was cautious and fearful, and refused to get his head wet at all costs. Nonetheless, Mattie was making progress and he could kick up a storm in the water!

Poem of the day (Thank you Charlie!): The Shooting Star by Charlie Brown

You started somewhere in the darkness of the before

The place only the spirit that creates life knows

And suddenly you were there

A bright light in our lives

You burned fiercely and with intensity

Loving life and all within it

Creating, playing, loving

Those who crossed your path

We watched you like a meteor

Shoot across our lives

Turning the sky into fireworks

For such a brief time

Such a small boy

Full of life

You came and went too fast

Like a shooting star across our lives

We treasure your light

For as brief as it was

The image burned into our hearts

Lives changed forever by your touch

You will be remembered

In the light of the moon,

The dance of a butterfly

The song of a wind chime

You were a rare one

Picked too soon

We remember who you were

And who you might have been

For most of the day today, Peter and I dedicated our time toward the Mattie Miracle Cancer Foundation (MMCF). I am also learning about the power of Facebook. The MMCF board encouraged us to open a Facebook account to get the word out about the Foundation. So Peter created an account a couple of days ago. Within a matter of days, we can see that the Foundation's website has many "friends" through Facebook, and the site is getting promoted to "friends" of friends. The networking potential is incredible, and I am honored that Mattie's nurses have signed on and are tracking the Foundation's creation and progress. What a group of women, who we absolutely love and respect.

This evening, we went to the Old Post Office Pavilion in the District of Columbia to attend the Tree Lighting 2009 ceremony hosted by the Candlelighters Childhood Cancer Foundation. "Light Up the Holidays with Hope" has become our nation’s largest annual childhood cancer awareness event. Each year during the December holiday season, a 23 foot tree is placed in the lobby of a building in Washington DC. The tree is solely decorated with thousands of gold ribbons (the symbol for childhood cancer). Each ribbon bears the name of a child who has, or has had cancer. The tree glitters strong in our nation’s capitol for all to see. Thousands each year are touched as they are reminded of our nation’s youngest cancer patients.

In addition to attending this event, we were excited to meet the Chelenza family (who live in Pennsylvania). I met Carey through Mattie's blog. She contacted me because her daughter, Lauren, was diagnosed with Osteosarcoma a week after Mattie. Carey and I have communicated through e-mail this entire year, and she continues to read the blog. We have read about each other through our respective websites, so it was a very special opportunity tonight to actually meet one another in person. Carey's daughter Lauren is an osteosarcoma survivor, and Lauren has a brother named Matthew, who is Mattie's age. The highlight of our evening was this reunion. The Chelenza family also made a generous contribution to the Mattie Miracle Cancer Foundation, which was very touching and meaningful to us.

Peter and I searched high and low on this 23 foot tree for Mattie's gold ribbon. We purchased the ribbon on-line, and the Candlelighters Foundation places the ribbon on the tree for the families. Despite our best efforts, we never found Mattie's gold ribbon. We found Lauren's and we even found Brandon's (Mattie's big buddy from Georgetown Hospital). The message we submitted to be placed on Mattie's ribbon read: "Mattie died on September 8th, 2009 from Multi-focal Osteosarcoma at the age of 7. Mattie was our world, our "old Soul." Mommy and Daddy miss you every minute of every day and you remain forever in our hearts. We Miss You We Love You."

Left: The 23 foot Christmas Tree, filled with gold ribbons.

Right: A close up of Brandon's ribbon!

In addition to seeing the Tree and finding your child's gold ribbon, there was a disorganized program of events that followed. One component of the presentation had people in the audience come to the stage to introduce themselves and their children with cancer. Most of the audience members who came forward were cancer survivors. Hearing one survivor story was painful enough, but one right after the other, was totally OVERWHELMING. All I could think of is that these children survived cancer and Mattie fought a good fight as well, but died. The unfairness and injustice about Mattie's death were screaming out at me! All I could think of was that the people around me have a child, and I don't. As I continued to sit and listen to these stories, I could feel the inner turmoil building up inside of me. I landed up crying and feeling angry at the same time. At which point, Peter motioned to me that we should leave. I said good-bye to Carey and her family and then we left. I left for two reasons. First, attending such a ceremony was not appropriate for me in my current state and I couldn't sit still one more second. Second, I acknowledge that I had absolutely no empathy for the families speaking tonight. That was a red flag to me because I normally can empathize with others, and when I can't that means I am on overload. I do not like admitting how this made me feel, but I am drowning in my own grief right now, and until I work through this, attending these social gatherings are not helpful but almost counterproductive.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I can only imagine how much determination, strength and faith it takes to get out of bed these days and particularly now during the Christmas season. I know we all admire what you are doing to be productive in spite of the grief and emotional exhaustion you face daily. I am glad you have the courage to go to some events and the wisdom to know where to draw the limits for yourself. I think it is good that you found some events you can appreciate this holiday season as it is very difficult to withdraw from all of it. As I light the candles of Hanukkah this week, I will keep you in my thoughts."

Friday, December 11, 2009

Friday, December 11, 2009

Tonight's picture features Mattie standing in front of the beautiful water lilies at the DC Aquatic Gardens. The picture was taken in July 2008, right before he was diagnosed with cancer. Every July we would take Mattie to the Gardens. This is a fascinating Garden, because it is free to the public, and is NOT well publicized in the District of Columbia. It is one of those gems and rare finds, that you almost don't want to tell others about, because it is so secluded and peaceful. Nonetheless, I have always been a water lily fan, most likely because Monet (one of my favorite impressionists) painted and captured these flowers in a most breath taking manner. In July, the water lilies at the garden are bursting open, and they are an exquisite site which makes you pause and appreciate the natural beauty around you.


Poem of the day: Comets

Stars at night they twinkle
Afar and burning bright
Each a source of wonder
Standing bright amidst the night

We pay them small attention
For they are always there
We go about our business
With but a single care

But then there are the comets
Bright and racing past
Everyone takes notice
Even if they do not last

It's what people remember
The dramatic burning light
That stands out on the landscape
And brightens up the night


Tonight's poem captures the beauty and brightness of Mattie. Mattie was like a comet for Peter and I. He did race passed us too quickly, but his communities did take notice, and the essence of him burns bright within our hearts.

I had another busy social day today, in which I had lunch with Ann, spent time with Ann's mom, and then went with Ann's children to a Christmas play entitled, The Living Christmas Tree. I had never seen this production before, and for those of you not familiar with it, it is sponsored by a local church in Alexandria, VA. The scenery for the play is VERY creative, because on the stage is a huge Christmas tree that is formed by a choir on risers. In addition to the choir shaped tree, there is a light show going on while the choir is singing. I am not doing the play justice, but it is very clever, very creative, and very moving. In addition to the music, there is also a story line acted out by 8 or more people. The story had a good moral message about the importance of opening your heart to your family, sharing what you have with others, and thinking beyond yourself at this time of year. The play was standing room only and the church was filled with families. There was one particular song that got to me. It did for various reasons, first I had never heard it before, but second and more importantly because the opening line of the song is "I think of loved ones who have passed away, and I pray they are resting in a better place!" I almost felt as if this song was sung just for me, as if Mattie was communicating to me directly tonight. I attached a link to the song, in case you would like to hear it. But I do agree, Christmas can make people cry, and I understand this more this year than ever before.

Sometimes Christmas Makes Me Cry

http://www.youtube.com/watch?v=-mLIHOqA2G8&feature=related

It was interesting while this very serious song was being performed, Ann's son, Michael, and Tanja's daughter, Katharina were sitting next to me. Neither one of them made a peep through this song or even flinched. I couldn't help but feel as if on some level this song made an impression on them, especially as they were sitting next to me. Since I perceive these children as both very sensitive and intuitive, their attention to this song, made me take notice.

Once the performance was over, my friend Christine (who came with us, but sat in a different part of the church with her daughter, Livi, and Abigail, Ann's youngest daughter) and I chatted about the production. I mentioned the song, "Sometimes Christmas Makes Me Cry." Christine immediately responded and said as soon as she heard this song, she thought about Mattie and I. In fact, she told me she felt Mattie's presence at the church tonight. Interesting that Christine and I felt the exact same way about this! Christine told me she is in awe of my strength because she doesn't know how I manage day to day, much less have the courage to attend a Christmas play, surrounded by children. Christine's comments made an impression on me, and I was grateful she said them, because many times I do not give myself credit for the things I manage to accomplish in a day, and I assure you, some days it takes great faith, strength, and courage to just get out of bed.

After the performance was over, we all walked to Christine's car. I walked with Abigail, Michael, and Katharina. Abigail was having a ball watching how cold I was (because it was frigid out), while she perceived herself as feeling toasty warm. We had a good time arguing back and forth about the weather, and while doing this, Katharina and I were in total agreement. It was just plain freezing. Katharina and I walked through the parking lot with arms around each other, in hopes of keeping each other warm. Walking with Katharina made me realize how much I miss the closeness and love you can only get from a child. For that moment, it seemed magical as we connected on an emotional level that went beyond the physical temperature in the air.

After the play, though I was not expecting this, Ann invited me to her community's holiday party. This was therefore my second party I attended, back to back, and as I enter these social situations, I am now extremely cautious. However, I noticed that I knew several women at this party, which is ironic. I don't live in Ann's neighborhood, yet through Ann, I have these connections as well. I guess I learned something about myself tonight and that is, despite being grief stricken, I am still the same social creature I was before my life was completely altered. I had a nice time talking and laughing with Ann's friends, and two of them want me to make centerpieces for their table. I told Ann I would actually be willing to do this as a fundraising opportunity for Mattie's Foundation. I was very happy to hear how much these women liked what I did for Ann's table, and though I wouldn't have even entertained doing making more candied trees, I keep thinking about what my friend Karen said to me. Which was to use my creativity in some positive way, and I can't think of a more positive way then to raise money for the Mattie Miracle Cancer Foundation!

After the party, I went back to Ann's house and we talked for several hours. Clearly Ann and I spend a great deal of time together and in this process the strength and power of our relationship grows exponentially. The past two days, have forced me socially out of my comfort zone, and yet despite my fears, I managed and connected with others. Of course, I always know that if I need to step out of these social moments, Ann will not only understand but support me through the process.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It seems like yesterday had its share of ups and downs. I am glad you are finding that people are willing to reach out to you and to allow you the freedom and the space to be however you need to be. I know that was a worry for you. I believe that anyone who has been a part of this journey with you and Mattie, has made a connection to you that will hold even though Mattie is physically gone. I can definitely understand though why it would be easier to connect to someone who has suffered a similar loss; the groundwork is already there for an emotional bridge. However, I do believe that the majority of those who care about you and Peter can also bridge that gap if you give them an opportunity to do so. As always, I hold you gently in my thoughts."

Thursday, December 10, 2009

Thursday, December 10, 2009

Tonight's photo was taken shortly after Mattie was diagnosed with cancer. Peter took Mattie to National's stadium to see a game. Though watching baseball wasn't one of Mattie's favorite things to do, he did find the adventure and time with his dad very special and often reflected on that night.

Poem of the day: Remember me

Remember me in quiet days
While raindrops whisper on your pane.
But in your memories have no grief,
Let just the joy we knew remain.
Remember me when evening stars
Look down on you with steadfast eyes.
Remember if once you wake
To catch a glimpse of red sunrise.
And when your thoughts do turn to me,
Know that I would not have you cry.
But live for me and laugh for me,
When you are happy, so am I.
Remember an old joke we shared;
Remember me when spring walks by.
Think once of me when you are glad
And while you live, I shall not die.




I began my day bright and early by visiting the attorney who has helped us establish Mattie's Foundation. I had IRS paperwork to sign. Certainly throughout Mattie's illness, I was up at the crack of dawn, however, now, I can't seem to wake up and get myself together at all. In fact, most nights I still can't fall asleep before 1 or 2am.

After I met with the attorney, I headed to visit Ann. We met up with Alison (our Team Mattie Fund and communications director) for lunch, and it was nice to catch up with Alison and to share some of my concerns and fears about our first Christmas without Mattie.

Ann had planned a party tonight at her home, and so I tried to help in some way set up for the event. While doing this, Ann's oldest daughter, Katie, came home from school and we chatted a while. I think there is so much to be said about being present as soon as your child gets home from school. In fact, I remember with Mattie, this was the moment where I actually found out how school went that day. The window of processing the day was narrow, but in a way, though Mattie was 7, and Katie is 12, I see many similarities. Katie spoke to me again about the centerpiece I made for her mom's table. She seems to be taken by the creativity of it, and each time she comments to me about it, I am taken a back because I am not expecting it.

I had the opportunity to spend some time with Mary (Ann's mom) and Dotty (Ann's aunt) later in the afternoon. Mary's assisted living facility was hosting a holiday party, so we had the opportunity to sing Christmas carols, chat with other residents, and eat non-institutionalized food. They even had a chocolate fountain, which attracted all the children who came to visit their older adult family member. The entire facility smelled of chocolate, which for all intensive purposes for me was wonderful!

I noticed however, in the beginning of the party Mary wanted to hold my hand. It was very touching in a way, because she then told me she is very grateful that I am present in her life. I told Mary it is hard to believe we just met each other last January, but as Dotty said tonight, some people just instantly connect in a very short period of time. I am not sure I would have believed this was possible prior to this year, but after experiencing cancer and Mattie's death, I think it does bond me closer to those who understand the trauma I am living.

There were many moms at Ann's party tonight and I got to reconnect with several Resurrection Children's Center (Mattie's preschool) moms. In fact, Katie (Zachary's mom - one of Mattie's closest preschool buddies) and I reconnected tonight for the first time since Mattie's death. In many ways, I feel as if Mattie grew up with Zachary, and therefore, I felt as if I knew Zachary VERY well. As I was talking to Katie tonight, we both landed up crying, because Mattie's death is just that profound and so life altering for both of us. In fact, I remembered tonight a whole host of memories, such as Mattie playing with Zachary, and this brought me intense sadness and of course joy at the same time. Mattie and Zachary had a special bond, that seemed to transcend time and place. Zachary was a lot like Mattie (prior to Mattie's illness). They were both active with a lot of energy. However, when Zachary learned about Mattie's cancer, that did not stop him from visiting Mattie at the hospital and Zachary accommodated to whatever Mattie was physically capable of playing and doing. I actually was in amazement over their bond and friendship, and I still am.

I value the connection I have made to several of the moms at both RCC and SSSAS, and despite being uncertain about attending tonight's party, I found that everyone really wanted to support me in some way. Which is very special, because after all these women were part of Team Mattie, not Team Vicki and Peter. But I am beginning to see that for many of our supporters, the support does continue to translate down to us. Throughout the night Ann checked in with me to see how I was doing, and at some points I was doing better than others. Social situations for me now can be draining, but also at times they make me feel very vulnerable. Nonetheless, tonight I felt like it was okay to be however I needed to be, which in a way was very freeing.

When I got home, on some level I was emotionally wiped out, and when I went into Mattie's room to put something away, I felt a deep sense of complete isolation and loss. I expect to see Mattie playing in his room, I expect to hear him, I expect to see him, but just like every day since September 8, such a possibility will never happen. It is times when this reality is too hard to bear and manage.

I would like to end tonight's posting with two messages. The first message if from my friend, Charlie. Charlie wrote, "It sounds like yesterday was a good day overall. I am glad you got to have lunch with Christine and rediscover all the things that made you value each others' friendship. I do wish that some parents who seem to constantly push their children into something structured could have the opportunity to read your blog on how important the unstructured play time was to Mattie and his friends. Maybe this is part of the reason why so many children seem unable to entertain themselves; they have no idea of how to pretend, to use their imaginations and really engage in play. That certainly was not true of Mattie who had one of the most amazing imaginations and who could engage almost anyone in play. I hope today is a good day for you and I hold you gently in my thoughts."

The second message is from a former student and teaching assistant of mine. Liz wrote, "I just wanted to say congratulations on launching Mattie's Foundation website. It looks wonderful! Peter did a great job with the logo and everything was so thoughtfully written. I'm sure it hasn't been easy but it is truly well done. Like so many others, I continue to think about your family. I was walking around Roosevelt Island last week and obviously thought of Mattie--you've written numerous times about how much he loved it there. It was a beautiful day and while I was walking, I kept seeing spots and wondered if he had played or explored there. In his honor, I ran and jumped on and off a few rocks along the path. My dog looked at me like I was nuts but I just smiled and kept going. It felt good to be silly so thanks to Mattie for the inspiration. :-)Much love to you and your family during this holiday season."

Wednesday, December 9, 2009

Wednesday, December 9, 2009

Tonight's picture features Mattie with his remote controlled boat at Roosevelt Island. This picture was taken in June of 2008, a month before Mattie was diagnosed with cancer. He looks like the picture of health here, and little did we know that inside his body turmoil was ensuing. I remember this day fondly, because Mattie picked out this boat and was so excited to be able to sail it on the Island.

Poem of the day: Butterfly

A butterfly lights beside us like a sunbeam
And for a brief moment its glory
and beauty belong to our world
But then it flies again
And though we wish it could have stayed...
We feel lucky to have seen it.


Tonight's poem reminds me of Mattie. In a way Mattie was like a butterfly. Physically he was delicate, but his inner spirit was full of flight and color. But like a butterfly, Mattie flew away much too soon, and I am left longing for more time, yet grateful for whatever moments we did have together.

I had the opportunity to meet my friend, Christine today for lunch. Christine's son, Campbell, and Mattie were very close friends. They met each other in kindergarten and in many ways they were a lot alike. They could play for hours at a time with each other, creating stories and doing all sorts of imaginative play. In fact, watching them was almost an adventure, because you never knew what they were going to think up next. They enjoyed running around, being outside, playing on the playground, talking with each other, and just being themselves. They respected and were comfortable with each other, which are very important components of friendship. I will never forget one afternoon, right after school, Christine and I met on the school playground and the boys played together for hours. They collected all sorts of things they found on the playground (e.g., rocks, sticks, etc...) and put these things into a pile. Part of the playground has a tree lined area, and they went between the trees and created a fort. Within the fort, they placed the pile of playground findings. But a rock wasn't just a rock, to them it represented a piece of gold. Each item they found was special and had greater significance than what it actually looked like. I really appreciated the creativity in their play, and I am so happy that Christine was willing to meet after school on a regular basis for the boys to have this free time together. Free time for our children is crucial, especially in the fast paced world we live in. It is the moments of free time that I now look back upon fondly, and I am so happy Mattie had plenty of them! While Mattie and Campbell were playing, Christine and I would be watching them and talking with each other. It was during their playdates that our children were building a bond, but so were we. We bonded over being moms, life in general, and raising boys. I look back on these special playground times, and cherish them, because it was on the playground that Mattie learned the fun of being a child and we both learned the beauty of making a friend.

Christine and I had a very lovely and meaningful lunch. We talked a lot about Mattie, how I am doing, and my fears and worries about the future. It is very hard sometimes to listen to someone who is in so much pain or who seems lost, but Christine kept pace with me, and was extremely supportive, understanding, and as I told her "real." Part of me always worries that without Mattie in my life, and without me being a mom, other moms will feel awkward around me. The beautiful part about today is that I learned Christine and I are friends first and foremost regardless of the situation, and this was a special gift for me to experience. After lunch we walked around Old Town Alexandria for about thirty minutes and talked.

Peter and I really value the wonderful e-mails we are receiving with your feedback about the Mattie Miracle Cancer Foundation and its website. We also appreciate the donations we received today! We thank you all for your continued support and for your passion to keep Mattie's memory alive.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad that Tuesday was a good day overall with you getting out and going to lunch. I don’t believe in coincidences; I think that you were meant to meet Jerry after you already had a relationship with him due to Mattie’s illness. I can’t help but feel you are right and that Mattie was a part of that “reunion meeting” at the assisted living facility. The foundation seems to be progressing well and I am relieved to hear that you and the board are in agreement about what needs to be done. I also agree that supportive social services are essential when dealing with the life threatening illness facing a child; it impacts every facet of the family’s life. The attitude of both the child and the parents are critical in managing the illness and the treatment and should not be neglected. I continue to keep you in my thoughts and prayers."

Tuesday, December 8, 2009

Tuesday, December 8, 2009 -- Mattie died 13 weeks (3 months!) ago today.

Tonight's picture was taken on Roosevelt Island. Mattie loved climbing on rocks there and you can see he is holding a large stick which he acquired along his journey. In fact, Mattie had one of the largest stick collections around. Each walk we took, he would acquire a new stick, and literally you should have seen the pile of wood he created right outside our front door. He was as sentimental as I am, and loved acquiring keepsakes as reminders of people and places he had been to.

Poem of the day (Thanks to Chris, Sammie's mom): Chosen One

If before you were born,
I could have gone to Heaven and saw all the beautiful souls,
I still would have chosen you...
If God had told me "this soul will one day need extra care,"
I still would have chosen you...
If He had told me "that one day this soul may make my heart bleed,"
I still would have chosen you...
If He had told me "this soul would make me question the depth of my faith,"
I still would have chosen you...
If God had told me "this soul would make tears flow from my eyes that would overflow a river,"
I still would have chosen you..
If He had told me "our time spent together here on Earth could be short,"
I still would have chosen you...
If He had told me 'all that you know to be normal would drastically change,"
I still would have chosen you...
Of course, even though I would have chosen you,
I know it was God who chose me for you...
Thank you God for allowing me to be your mommy!


Today marks the three month anniversary of Mattie's death. I calculate Mattie's passing in weeks. However, today I received a lovely e-mail from Mattie's social worker, Denise. In the e-mail she acknowledged the fact that Mattie died three months ago. Some how seeing the passage of time in months was startling to me. I am not sure why? Maybe because it is hard to believe three months have passed by already, and yet it feels like only yesterday we were fighting the battle of a lifetime!


I want to thank so many of you for checking out the Mattie Miracle Cancer Foundation website. We also appreciate the very generous donations that have come into us today. Peter and I are so appreciative of the fact that so many of you have continued to stay connected with us and are working hard at keeping Mattie's memory alive. There can be no greater gift we could receive!


I had the wonderful opportunity today to meet up with Ann, Mary (Ann's mom), and Ann's aunt (Dotty) who is visiting from Massachusetts. We all had a good time together, shopping and having lunch. It is a wonderful feeling to be included and in many aspects this in and of itself is very healing.

When we got back to Mary's assisted living facility today, I happened to look at the person playing the piano for the residents. I had to do a double take, because you will never guess who it was? It was Jerry! Jerry is the "piano man" from Georgetown University Hospital. He and Nancy were Mattie's favorite musical volunteers! I am deeply fond of Jerry for all the joy he brought Mattie and I. Even in my worst days, when Jerry would come into Mattie's room, for that half an hour, we forgot our troubles and sang and played Name that Tune with Mattie. When I saw Jerry playing today I was simply stunned. We both acknowledged each other, gave hugs, and the residents did not know what to make out of us. Joining Jerry in song comes natural to me, since I did this for MONTHS! So today, Jerry played the piano, I sang, and the residents played Name that Tune. I have asked Jerry to let me know when he comes back to Mary's assisted living facility again, so we can potentially team up. I introduced Jerry to Ann. Jerry has heard a lot about Ann, but hadn't met her before. It was like a reunion of some sort today, and for that moment in time, I felt as if Mattie was smiling down at me.

When I said goodbye to Mary and Dotty this afternoon, Dotty said to me that she thought it was fate that I met up with Jerry today, and that this was a positive sign. I think she was right, because seeing Jerry made me happy, and singing and talking with the residents was very special.


Tonight was the Mattie Miracle Cancer Foundation's first board meeting. The meeting went extremely well, and the dynamics amongst board members was collegial, open, and most importantly I felt everyone was motivated to make this Foundation a success. We talked about the complexities of funding research, and while we build up funds to actually support this endeavor, the Foundation can focus its attention to enhancing social support services for patients and families. In fact, the medical professionals on the board encouraged us to pursue this portion of the mission. This is certainly an area that I am very passionate about, but wasn't sure how the rest of the board would perceive this. So when I heard the medical doctors on the board express that this would be a value added to the pediatric cancer community and that this would be a great contribution on behalf of the Foundation, I was extremely happy and pleased. After a productive meeting, we all went out to dinner together, and the conversations and ideas continued flowing. I want to thank many of you for the positive wishes today, and I am happy to report we are off to a good start with a very talented board.


I would like to share Part II of the Mattie Capers with you. As many of you know, this is a story told by my mom. What I particularly like about Part II is it allows me to see how cancer transformed Mattie's energy level and the kind of play he was able to engage in. I hope you find this as insightful as I did, because I got to see Mattie through the eyes of my mother.

========================================

The Captain Mattie Capers - Part II by Virginia R. Sardi

Mattie’s Fighting Spirit keeps “The Game” Alive

In reflecting back over the last years of Mattie’s life, the changes that cancer made in our lives clearly differentiates the previous innocent period of play from how we played ”the game” after Mattie became ill. Nonetheless “the game” went on and transformed itself on an “as needed” basis primarily because Mattie loved it and wanted it to continue. In the early days before his illness, I naively took for granted the stability in our lives that made it possible for us to interact freely with Mattie, all of us carefree and exuberant, unsuspecting of what life had in store for us. Our five senses could not detect a threat so ominous and devastating in its capacity to inflict pain that in retrospect it seems impossible that we had no awareness of the dark clouds amassing over us that threatened our precious tranquility and peace of mind shattering forever all our conventional expectations about life, faith and destiny. With a fateful telephone call from Vicki on July 23, 2008, I realized at once that Mattie, a healthy and bright little boy with no previous history of serious illness would be faced with the fight of his life in the days ahead and was stunned to hear that the diagnosis of multi-focal osteosarcoma meant that the disease was aggressive and that the prognosis for a cure was iffy at best. His odds of survival were about 10%. I was enraged that an innocent child like Mattie had to experience the horrors of chemotherapy and limb salvaging surgeries even though there were no guarantees that any of these invasive and debilitating procedures would actually save his life or even prolong it. At first, some doctors expressed the hope that he could make a complete recovery but after he was seen by specialists at Sloan Kettering, I understood how challenging his case was. I still wanted to believe that a cure was possible because I could not face the alternative. In my heart, I knew that he would have to endure suffering, deprivation and pain which seemed incomprehensible then and still troubles me now for there is no earthly explanation for WHY he was chosen to carry such a heavy burden in this life given that he was so gifted and bursting with energetic youthfulness that shouted to the world with passion, “I want to live.” His decline and fall is a condemnation against nature itself! It is not possible to rationalize away the trauma that tested the heart and soul of his parents and be witness to the slow painful obliteration of a beautiful life that held so much future promise without feeling deep bitterness.

I know that I digress from my original objective which was to depict the events of “the game” and how it was transformed by cancer but it seems imperative to take a moment to express my feelings about how much more needs to be done to increase survival rates of children with osteosarcoma. Much progress has been made in fighting cancer in the last decade, although very little of it directed towards promoting better medical treatment of osteosarcoma. There is still so much more that can and should be done. That is why I’m so pleased that the Mattie Miracle Foundation will address this need by making the public aware of the deadly nature of the disease and undertake the funding of research projects to improve the survivability of more children with its attendant goal of finding less invasive and traumatic ways to treat children who are stricken.

Getting back to “the game” itself, you may wonder what happened to it after Mattie was diagnosed with osteosarcoma and began his rigorous and debilitating treatments at the hospital. “The game” underwent a metamorphosis that transformed it into an activity more suitable to his physical limits and more innovative in scope. But, indeed, “the game” did go on. Interestingly enough, we never played it in the hospital but whenever he returned home and we assembled in his living room, he was ready to go and so were we!

The very first time though that I can vividly remember playing the game after the diagnosis was sometime before his first surgery. He had been undergoing chemotherapy for a number of weeks but still had a lot of spunk, verve and drive. Mauro and I had rented an apartment in the complex that Vicki and Peter live in to be close at hand and lend support more easily during these difficult days. It was a Sunday when Vicki suggested that Mattie come to our apartment so that she could get some much needed rest for a few hours. We were delighted with the suggestion and were equipped to engage in “make believe” because Vicki had asked us to store one of Mattie’s big art projects from the hospital in the living room of our apartment. It was a structure made out of at least 8 big cardboard boxes and became the basis for our new play protocol. In this play scenario, “Captain Mattie” became the head of a team of computer experts tracking down evil doers in outer space who were being lead by none other than,” Captain PopPop Bad Guy.” It was a complete departure from the past and was a natural extension of Mattie’s inventive genius and his growing maturity and interest in outer space. The cardboard boxes became “Captain Mattie’s Control Station” which we outfitted with improvised computers to track the progress of our actions to insure peace in outer space and apprehend and bring to justice all the troublemakers lead by “Captain PopPop BadGuy” who wanted to take over Mars to make it his new base and subjugate all the friendly little Martians who had lived there for centuries. “Captain Mattie” used all his resources to help the Martians keep their planet safe from the nasty invaders. In the end, the Martians thanked him and everybody lived happily ever after. This was the first time we played the space version of “the game” because he did not have all his toys readily available and so it was necessary to use the box structure as the basis for the new adventure. We played whenever possible until we left in June. After chemotherapy and the surgeries he was not able to do all the physical stuff that usually was a big part of every game, so the dynamics of “the game” had to be modified to allow him to command the action from his wheelchair or a comfortable place on the couch in his living room. As he could no longer build the electric power station or the city with all the little people, we looked for other ways to continue “the game” because we knew that Mattie still wanted to be involved in imaginative play with us. As he could no longer rely on his body for any comfort, we thought it important to find ways to preserve the one activity that could fully engage his mind. Together with Mattie, we slowly recreated a tantalizing new story line that developed into an exciting game over the course of the few remaining months of his life.

When we returned in August, we continued “The Game” with renewed vigor but under very stressful circumstances and with a very different purpose. We played it with him whenever he was up to it until the last week of his life and regard it as our unique contribution to Mattie’s peace of mind, giving him something pleasant to look forward to and some final childhood moments of joy and happiness. How “the game” evolved and changed during the last three weeks of his life is to be the subject of the final Chapter of “ The Captain Mattie Capers!”

=======================================

I end tonight with six messages I received. The first message is from my friend, Charlie. Charlie wrote, "First, I have to say I love the logo for the foundation. It is wonderful, warm, strong, striking in appearance and very unique. I love how the sun is part of the "c" for cancer to indicate that there is hope for a cure. You and Peter did a wonderful job. The website is coming along well and I am pleased that you chose to put your tribute to Mattie on it. The first (and last) time I saw it I was crying so hard I could barely see through my tears. I am sure yesterday's efforts with the gingerbread houses were frustrating but good for you for going back and getting them done. That's the sort of effort running a foundation takes. I know Mattie will be with you, singing you can do it, into your "inner ear". Be patient today as you get your foundation board up and running. I hold you in my thoughts."

The second message is from Mattie's oncologist and now our friend, Dr. Kristen Snyder. Kristen writes to us every Tuesday to acknowledge the day Mattie died. Kristen wrote, "Today is Tuesday. But I feel like it is a different kind of Tuesday than the Tuesdays we've had for the last twelve weeks. Today, is the Tuesday the Foundation website was launched! And it is a beautiful site...with Mattie's sun as the backdrop and his face smiling over the pages! I love it. I've read through it. Your words are heartfelt and palpable. I'm looking forward to the events of the spring and summer!! Good luck tonight with your first board meeting. I can feel the energy for the foundation moving things forward and I'm certain Mattie is excited and so very proud! Thinking of you, this Tuesday and Always."

The third e-mail is from a former student. Tess wrote, "I was thrilled to get a link to your Foundation website in tonight's blog posting, and I have just taken in each page with amazement. This is already turning out to be such an incredible initiative, and your mission, descriptions, everything looks phenomenal, compelling, articulate, compassionate, heartbreaking and impactful. I'm thrilled to see some of the figures who have become familiar to your blog readers as serving on your board - I am so excited to watch this project grow. What an extraordinary tribute to Mattie. It is also delightful to recognize Mattie's Mr. Sun painting as the background of the website - one more detail that speaks movingly to the brilliant power of Mattie's life and the light-filled impression he has left on all of us. I want to tell you how much your writing and reflections mean to me...your descriptions are so full of human feeling, it is sometimes overpoweringly potent to read - filled with such love, grief and tender, deep emotion as I have never seen put into writing the way you do. I am thinking of you daily Vicki, especially in this brutal holiday season, and am holding you, Mattie and your Mattie Miracle Foundation in my thoughts and prayers, deep in my heart.You are a true hero to me Vicki - vulnerable, brave, tireless, real, loving mother."

The fourth e-mail is from a colleague of mine. Denise and I went to graduate school together and she came up from North Carolina to attend Mattie's funeral. Denise wrote, "I just saw the foundation's website, and it looks amazing! You can tell a lot of love and effort went into its creation. I love the sun as the background for the pages, and the pictures of Mattie are a wonderful touch. It really personalizes the website, especially for those who didn't know Mattie. I wish you all the best as you lead the foundation to find happier endings for families. I know in my heart of hearts that you will be successful!! Please let me know if there is ever anything I can do to assist, aside from the donation we will be making later this month."

The fifth e-mail is from a former student of mine. Cynthia wrote, "After reading the blog, I clicked on to the foundation website. When I got to the Mattie's Story page, I felt the world nearly stop. I never knew the story of how you discovered the cancer. Those few sentences about the tennis camp are like a terrible car accident: Everything is fine one second, but that is the very last second that they will be. In the very, very next second, "fine" is blown away.I applaud you for your fight and determination to as you claw your way through your grief. I know it hurts probably every second of every long minute for hours and days at a time. Yet, you are living, and you are trying, and you get together with friends, and you take projects upon yourself, and you complete them well, and now you set about to do battle with Mattie's disease in a whole new way.Anyway, this is just to say, I am so very sorry; but it also is to say, you are inspiring."

The sixth e-mail is from a former student of mine. Ariel wrote, "I just wanted to let you know that even though I haven't written in a while, you, Peter and Mattie are constantly in my thoughts. I continue to ready your blog daily and am in awe of your ability to be so honest with the struggles you continue to face. I can't even imagine the pain you are going through. It is hard to describe the feeling that I get just reading about you and Peter attempting to live your lives without Mattie. Based on how devastated it makes me feel, I can only imagine how it is for you. I admit, there is no way for me to understand how you feel, but like all your other readers, I am trying to. I also wanted to tell you that over Thanksgiving I was helping my 6 year old cousin build an Indiana Jones lego set and I couldn't help, but think of Mattie. I was never really into legos, but I have to say I was fascinated and enjoyed watching my cousin as he attempted to put the pieces together. I can't help but think this is a result of reading about and seeing many of Mattie's creations over the last year. I have to say, I didn't realize how truly complicated legos can be -- Mattie was clearly a lego master. I am so happy to see the Mattie Miracle Cancer Foundation coming along. I am thrilled to have made my first donation and I hope to not only donate myself, but to also brainstorm some ways to fundraise in NYC. Thinking of you always and wishing you as much peace as possible during this difficult holiday season."

Monday, December 7, 2009

Monday, December 7, 2009

Tonight's picture was taken when Mattie was three and a half years old and attending Resurrection Children's Center Preschool. Mattie and I baked two gingerbread houses, and brought them in for all the kids to decorate. In the picture you can see Mattie with his buddies (Caroline, Kate, and Sam), and he is absolutely thrilled. I will never forget the look on Mattie's and Kate's faces when they both determined that they could actually eat the "glue" (or royal icing) used to attach the candies to the houses.

Poem of the day: Hello, Goodbye by Michael W. Smith

Where is the navigator of your destiny?

Where is the dealer of this hand?

Who can explain life and it's brevity?

'Cause there is nothing here

That I can understand.

You and I have barely met

And I just don't want to let go of you yet.

(Mattie), hello, goodbye

I'll see you on the other side.

(Mattie), sweet child of mine

I'll see you on the other side.
And so I hold your tiny hand in mine

For the very hardest thing I've ever had to face

Heaven calls for you

Before it calls for me.

When you get there, save me a place

A place where I can share your smile

And I can hold you for more than just awhile.

I spent most of my day at home today. I was able to focus for a little while this morning (which is a rarity!) and edited and updated the Foundation's website that Peter created. It is a work in progress, but I am very proud of its evolution. If you want a sneak peak at it, please visit: www.mattiemiracle.com.

Later in the day, I decided to start assembling the gingerbread houses. In theory that shouldn't be too complicated. But for some reason my glue (royal icing), wasn't holding the pieces of the house together. I remained patient with this project for the first three hours. But after that point, I was quickly going downhill. The fact that the pieces weren't sticking, wasn't really the problem, though that was terribly annoying, what was bothering me was a much bigger issue. The issue seemed to be with me, my inability to get it to work, and one negative thought led to a spiraling downhill of other negative thoughts. When Peter came home tonight, he could clearly see I was in a state and covered in royal icing. The only thing sticking together were my fingers, and Peter and Karen both joked with me that I should get the hot glue gun out and glue the house together! Funny as that may sound, that did not seem like a good alternative to me. So in my overwhelmed state, I removed myself from the house assembly and made dinner. After dinner I went back at it, and like my mom mentioned at the Celebration of Life ceremony, Mattie's voice was also in my head an d told me "you can do, don't give up." This was one of his favorite lines which he heard from a Blues Clues episode on TV. It was actually a song, and whenever we got frustrated we would sing, "don't give up, just go on!" Needless to say, from the picture on the left, you can see that house #1 is assembled and sticking together!

Tomorrow is our first Mattie Miracle Cancer Foundation board meeting. Seems fitting since tomorrow will mark the 13th week of Mattie's death. Keep us in your thoughts tomorrow, and I hope this is the start of something more positive in our lives.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry that you did not have the opportunity to share so many of your interests and passions with Mattie. Given Mattie’s delight in music, I can imagine that sharing your favorite old musicals would have been a joy. I remember my mother playing movie soundtracks for my sister and I and encouraging us to learn the words to her favorite songs. I am glad to hear that you are taking the time to do some creative things during this time and not allowing your grief to keep you from reaching out when you feel able to do so. That said, give yourself time and space for your feelings; try not to judge yourself and to be patient. The past year was exhausting, you used up your reservoir of energy (physical, mental and emotional) and rebuilding your strength will not happen in a week or even a couple of months. Be kind to yourself now. I hold you gently in my thoughts."

The second message is from my sister-in-law's friend, Lesley. I agree with Lesley and Ed, Peter was an amazing dad! Lesley wrote, "This weekend my husband (Ed) and I went to the mall. We never really shop together, but we decided to make a dent in our holiday shopping. During our journey, we entered a Lego store. Ed had never been in the Lego store and he was instantly a child again. He immediately noticed the complicated sets...the sets Mattie created with Peter. I began to show him all the sets Mattie made during his time in the hospital. We both sat and stared and I saw tears in Ed's eyes. He understood the commitment and love that Peter dedicated to these projects because Ed often helps Max. Ed looked at me and said, "They were best buddies and he was an amazing father." It was amazing to me how quickly he got their connection through Legos even though he never read the blog."

The third message is from a former student of mine. Betsy wrote, "I don't really have any words of comfort to give you- or at least anything new. But just know that I am thinking of you today. I know you are suffering from feelings of insurmountable loss and I can only repeat that in time that loss won't seem quite so insurmountable. But it takes time and you need to remember to be kind to yourself during this horrible period. I also wanted to share that after my dad died, I decided to take an online grief counseling course. That led me to a grief counseling group for adults who lost their parents hosted by hospice. I know you haven't had a great experience with hospice, I just wanted to throw out there that there must be grief counseling groups for parents who have lost their young children. And now may not be the best time to go to one of those groups - Mattie died so recently. But maybe down the road when you feel ready, a group specific to your loss would be helpful. I learned a lot from my group and it allowed me to sort out all of the feelings I was having and make sense of things at least a little bit. You are in my thoughts - I wish there was something I could do to take some of your pain away. Just know that you are a wonderful person - a fantastic teacher, an incredible mother, a loving wife, daughter and friend. You will persevere and one day things won't seem quite so dark. And you will be in awe of yourself - your strength, your compassion, your ability to love. And Mattie will be too."

Sunday, December 6, 2009

Sunday, December 6, 2009

Tonight's picture was taken in Mattie's kindergarten classroom. He is showcasing one of his writer's workshop stories. In writer's workshop, Mattie would illustrate a story, and then underneath the story try to formulate a sentence to describe the picture. I was always told by Mattie's teachers that he never had trouble coming up with a story or illustration.


Poem of the day (Thanks Kristi, a fellow Osteo mom): Come with me.

God saw that he was getting tired,
And a cure was not to be.
So He put His arms around him
And whispered, "Come with Me."
With tearful eyes we watched him suffer,
And saw him fade away.
Although we loved him dearly,
We could not make him stay.
A golden heart stopped beating,
Loving hands put to rest.
God broke our hearts to prove
He only takes the BEST!

Peter and I started out the day discussing our plans for the Mattie Miracle Cancer Foundation. Peter is working very hard at putting together materials to share with our board on Tuesday. As we were talking, I began to cry because I want to help Peter with these things, but I just physically and emotionally can't at the moment. Concentrating on anything is difficult for me, not to mention reading and researching topics. The lack of concentration is just one of the many signs and symptoms I have from dealing with profound grief. Nonetheless it is a very frustrating aftermath. Peter and I talked through how I was feeling and I eventually mustered the energy to work on a mission statement for the Foundation.

I am onto my next craft project for the week, as I am helping Ann with designing five gingerbread houses from scratch. My lifetime friend, Karen, had me laughing today, because she sent me a message asking me whether I ever thought of turning my creativity into a business. I am not doing her message justice, because it was how she stated this to me, with such details down to the layout of the store that made me chuckle. In any case, designing gingerbread houses began for me when Mattie was in preschool. It was a joint venture, because his teacher, Margaret, let me borrow her cast iron gingerbread house mold. Mattie and I baked two houses and brought them into school for his classmates to decorate. It was a major hit. So as I bake these five houses now (again using Margaret's cast iron mold), I can't help but be transformed back to his preschool days. In fact, last night while I was baking the second house, I looked out the window and saw a huge moon. All I could think of was my "Mattie Moon." He wasn't physically baking with me, but his presence was felt nonetheless, shining down on me.

Later today, I went to visit Mary (Ann's mom). Mary wasn't feeling well, but despite that, we chatted and I sat with her while having dinner. Her table mate was back, and we picked up our conversation from where we left off last night. Mary told me that he was actually looking for me at lunch time. I told you last night that Mary's tablemate wears a hat that says, "Life is too short." However, there is a second line which is much smaller on his hat and I had to get closer to him today to read the entire statement ...... "Life is too short, eat dessert first." This fits his personality and joy for life. I have enjoyed interacting with him both nights. As we get closer to Christmas, Mary too, seems to be sadder and more upset by the fact that her family has gotten smaller this year. I understand this sadness all too well, which she is very aware of.

Tonight, Peter and I cooked dinner together, using a recipe from one of the new cookbooks we bought. We both laughed at the final outcome, because if we were to make this dish again, it would need to be revamped. In our lives, laughter is so infrequent so when we do it together, we take notice. As I am writing the blog, Peter is watching TV. He asked me to stop typing and to look at the TV, and then he quickly said to me.... What movie is this? Remember I am an old movie fanatic, so I immediately knew the movie was "The Bishop's Wife." Which is a very charming Christmas movie starring Cary Grant and David Niven. It is one of my favorite holiday movies along with "The Bells of St. Mary" starring Bing Crosby. Somehow, seeing this movie on TV brought a smile to my face. It reminds me of happier times, and I am saddened that I never got the chance to introduce Mattie to some of these wonderful movies. A great line from "The Bishop's Wife" is,"The only people who grow old, were born old to begin with." Simple but profound.

I would like to end tonight's posting with two messages. The first one is from my friend, Charlie. Charlie wrote, "I know it seems impossible that a bond as strong as the one between you and Mattie would ever be broken and perhaps it is not. I know that you walk alone now, without him physically by your side but I cannot help but believe his spirit lives on in the hearts and minds of those who knew him and those who never had the opportunity but admired his courage from afar. There is great temptation to immerse yourself in memories and not come up for air, but that really doesn't honor the memory of who Mattie was; he was someone who was intensely involved in life. Every time you do the same, as painful as it may be, you honor him. Grief needs to be walked like a tightrope; a fine balance between now and then, past and present. As you find your balance, your center, many of us are here to help, to listen, to strengthen you and to grieve with you in our own ways so that your tears don't fall without company. May today find you able to balance a little longer. I hold you gently in my thoughts."



The second message is from my friend and colleague, Nancy. Nancy wrote, "I, like, Charlie, am grateful for your friendship. What a lovely trio of holiday trees! I am glad that you gave yourself this project. It is so fitting that within your aching heart, you would want to give a special gift to your dear friend. This is the Christmas season as I understand it. I know that this holiday is especially difficult as it is often a holiday for one's children. Abigail's story was beautiful and a meaningful treasure for you. Mattie did and has touched many lives throughout his short life. Each one of us who care for your family will continue to remember that forever. I believe that each of these connections are his way of saying 'I love you, Mommy.' As I checked in today and over the last few days, the same picture has come up on the revolving album. It is the one of Mattie crouching in the snow. He looked like he was having fun and since it has been there often, I felt it was a sign of his feeling safe because of Peter and you. Then when I got back to look at yesterday's message, there he was sticking his tongue out. Initially, I just thought this cute and then I saw that it was snowing and that he was probably trying to catch the snowflakes on his tongue. What a beautiful, simple way to experience the world! He had so many special times with each of you. You gave him all that children need to meet the challenges of life and that he did, supremely! I think your story about the last visit with this neurologist is a lesson for us all. He didn't react in a comforting way the first time and you let him know it. He is a listener because once you shared your feelings and thoughts about his behavior, he greeted you very differently the next time. I am glad that you were able to evoke this response from him as you need to trust that he can help with your migraines. The pain in your head seems to reflect the pain in your heart. I wish you a simple day, a self caring day today. Continue to listen to your heart and accept what you can as you can. The world is here to be of help to Peter and you however you need it. It is our turn to give back to you."