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

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

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


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



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

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

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

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

May 22, 2010

Saturday, May 22, 2010

Saturday, May 22, 2010

Tonight's picture was taken on Halloween of 2005. I had no idea this experience was my preparation for a long road of hospitalizations ahead of me. In October of 2005, Mattie developed a raging fever, intense vomiting, and was severely dehydrated. I had taken him to see his pediatrician the day before who assured me he was fine. Clearly however, I followed my better instinct, and when I did not like how things were going, Peter and I took Mattie to the emergency room. Luckily we did because at that point he was becoming septic. It turns out that Mattie had an untreated ear infection, and the infection got out of control. When the pediatrician visited me in the hospital the next day, she assured me he did not have an ear infection the day before. At that point, I made my point to this doctor, and told her that when I say Mattie is sick, he is sick. She learned her lesson with me after that point. Needless to say, Mattie spent his first preschool  Halloween in the hospital. It is a hospitalization I will never forget, because Mattie was NOT on a pediatric floor, and the doctors and nurses had absolutely NO skills working with a three year old!

Poem of the day: Surroundings by Charlie Brown


My home is filled
With thoughts of you
Your clothes, your toys
Your artwork too
I cannot pack
Them up you see
I need to have them
Close to me
How can I put
Your things away
And admit you're gone
Forever, no way!
And yet they scream
The loss of you
I avoid them now
What can I do?
So here I'm stuck
In my pain
Surrounded by an
Emotional drain
Maybe soon I can
Find a way
Through this impasse
It's hard to say
There's no moving on
But maybe moving through
With the help of the Lord
And the spirit that was you.

As my readers know quite well, tomorrow is the Mattie Miracle Cancer Foundation's first annual Pediatric Cancer Walk. Volunteers are working very hard to help us in every possible way, and the logistics team, headed by our friends, Tamra and Liza, met today for a final discussion of the plan. I would say we are in very good shape, and our registration numbers are in line with the amazing turn out we received last year, during the March for a Mattie Miracle. I only ask that you all HOPE for SUN!

Peter went to the airport this afternoon and picked up Sean Swarner, our featured speaker. I look forward to meeting Sean tomorrow, and I was so impressed with his desire to want to help us with set up and clean up at the Walk. I felt that type of commitment said something about his character and his passion behind our cause.

My parents, Karen, and I ran around doing last minute Walk tasks today. It was a full day, and at the moment as I am typing this Peter and Karen are loading things into Peter's car so that we can be ready to roll out the door at 7:30am. We have an 8am interview with Fox 5, and we are very grateful to this TV station for their interest in our story and our event. Peter and I look forward to seeing many of you at the Walk. Our goal is to try to talk to as many of our attendees as possible, because we want you personally to know how much your support means to us.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I hope this interview with Fox 5 News brings much deserved attention to the Foundation and the cause of childhood cancer. As you've so eloquently stated many times, we really have failed to make much headway in the past twenty years and it is well overdue. May the attention bring an overwhelming positive response to what you are trying to accomplish. I really appreciated hearing your mother's story about your grandmother and her losses. I've often felt that if we live on in some way, if our souls remain after our physical selves are gone, it makes sense that we would have difficulty taking part in the next life if the people we love are always tied to us with sad thoughts and unable to fully take part in this life. As we've grown in "sophistication" we've lost a lot, the ability to believe, to openly show grief and then to "know" that we will be with those we love again someday. Therefore we are "stuck" in this in-between place, without enough faith to carry us through those situations where science has no answers. When I practice today and I will send you the energy to help you find the strength to keep looking for the path that will lead you forward in a meaningful way. I hold you gently in my thoughts."

Friday, May 21, 2010

Friday, May 21, 2010

Tonight's picture was taken on Mother's Day in 2007. Mattie posed for the camera and was trying to express how he loved me, by holding his arms tightly in a criss cross position. I have my parents visiting, and my lifetime friend, Karen, as well. They are all here to support us in this year's Walk. My mom was telling me today that it is hard visiting our home because it screams out Mattie. I have learned to absorb this deep and sickening feeling, but when she brought it up today, I did feel validated in a way because it does help explain why I feel unable to enjoy being home. I most certainly, or rarely spend time in our living room any more. I only became conscious of my avoidance of that room a few weeks ago. When I look at tonight's picture, it is simply impossible to believe that the face before us is no longer physically with me.


Poem of the day: Don’t Think I Do Not Grieve by Brenda Penepent

Don’t think I do not feel;
because you see no tears.
A river rages deep inside
of grief, and loss, and fears.
Just because I do not cry now,
don’t think my heart’s not broken.
I keep inside the misery
of words not to be spoken.
Sometimes I smile, or crack a joke,
so you won’t see the pain;
or notice how my hands will shake,
or how I’ve gone insane.
Each time I chance to think of [him],
my heart is ripped asunder.
The loss I feel is mine alone.
you will not see my thunder.

My mom and I went over to Ann's house today. We wanted to show my mom the raffle items that the team wrapped on Wednesday. My mom loved what she saw, and we had the fun of wrapping up a mystery item for the raffle today! All three of us got into this project. In the midst of wrapping, Ann was visited by a RCC mom and a SSSAS mom, both dropping off food and drink contributions for the Walk. Seeing things pile up in Ann's garage has been a very humbling observation for me. Humbling because it shouts out how caring, thoughtful, and generous our community continues to be, and how the support hasn't stopped after Mattie's death.

We went out to lunch today, and while having lunch, Peter got a phone call from Fox 5 news. They would like to interview us Sunday morning before the Walk, and the producer expressed his support for our cause. So stay tuned for more information about this.

While I was driving in the car today with my mom she told me a fascinating story about her mom. I was very close to my maternal grandmother, and she lived with my parents and I while I was growing up. I think my mom wanted me to hear this story because she felt as if it would be meaningful to me. I knew my grandmother had a brother who died when he was only 31 years old. No one really knew what he died from, but most likely he died from a post surgical infection. When he died, my grandmother and her mother were devastated. They spent a great portion of their days crying and unable to function. Then one day, my grandmother was able to recall a dream she had. In her dream, her brother was sitting in a baseball dugout, looking sad, while he was watching his friends play ball in the field. In the dream, my grandmother went up to him and asked him why he wasn't playing. He responded and told her he couldn't play and have fun when he knew his mom and sister were so miserable and crying everyday. This dream, I hear, really shook up my grandmother, who then relayed the story to her mother. It was from that day forward that both women vowed not to cry. They wanted my grandmother's brother to be able to move on to a better and more peaceful life, without having to worry about them. My mom tells the story better than I do, but I found it so interesting how one dream could change the outlook of my grandmother and her mother. I am not sure if I feel as deep a spiritual connection as my grandmother did, but knowing her, she was an extremely sensitive individual, and if someone was going to have some sort of vision, it would be her. But then again, my grandmother was a devout Catholic, and despite having multiple losses in her life, her convictions and beliefs never wavered. I am not as well grounded in my beliefs as she was, and therefore, I am not convinced that how I act and feel now, impacts Mattie's happiness in the great beyond. Nonetheless, I thought about this story and my grandmother today, and having experienced intense grief of my own now, I empathize with the fact that my grandmother lost her brother at a young age, a husband to cancer at a young age, and also lived through the death of her second child.

Tonight my lifetime friend, Karen, arrived into town. Karen has been keeping up with my crazy pace each and every day, and she is now ready to hit the next few days running. We have another full day tomorrow, which is our last preparation day before the Walk! My home is looking more like a wherehouse than a home at this point. To distract me tonight, Karen pulled out her itouch, or ipod. She showed me how it worked, and we listened to music on it, and played games. We have come to the conclusion from the games that math is NOT my strong suit. My mom, having been a high school mathematics teacher can attest to this fact!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I keep checking the weather reports and hoping for sunshine for the walk on Sunday. But rain or shine, I know that things will go well and your supporters will be there for you. I am glad your parents are here to support you on this second walk; with all the tasks you have ahead I know you are delighted to have them here to help you. I clicked through to check out the Pork Barrel Restaurant and I thought it was wonderful how they are offering support to the foundation; I wish them success and I hope this turns into a good partnership for both the foundation and the restaurant. As I practice today I will send you the energy to help you complete those last remaining tasks that need to be done before Sunday. I hold you gently in my thoughts."

May 21, 2010

Thursday, May 20, 2010

Thursday, May 20, 2010

This picture was taken in July of 2009. Mattie was in the Lombardi Clinic, and the Magic Man (otherwise known as Bob Weiman, Mattie's head of school) came to visit. Mattie and Bob performed several tricks for an audience. An audience comprised of two good friends of Mattie's, Jocelyn and Maya, and Mattie's social worker, Denise. Mattie had three wonderful buddies at the hospital, Brandon, Jocelyn, and Maya. Those of you attending the walk this year, will have the opportunity to see these wonderful friends, as they help lead us during the first lap around the track. Peter and I are so grateful to these three people. With them Mattie felt "normal" and part of a community. He played, chatted about his concerns, and could be himself with them. I think it is very special that Bob Weiman is performing magic tricks with fifth graders at the Walk this year. Mattie would be very happy that this tradition is being continued, since he had a great time performing with Bob last year at the March for a Mattie Miracle.

Poem of the day: I thought I'd never have to... by Raquel Calderon

I knew this day would eventually come
But I never thought it would be now
[he] was so precious, [he] was the one
Who would change my life some how.
You are not supposed to bury your children
They are supposed to bury you
It's hard to think this disease would take [him]
And there is nothing I can do.
It was so hard to say those words
Because we all loved [him] so
I didn't want [him] to suffer any more
So I had to let [him] go.
[His] passing was so hard to handle
But has made us oh so strong
We know the road will be a battle
But [he] is where [he] belongs.

Today was another busy day with Walk preparations. My parents came into town last night, and they helped me with posters, picking up Foundation mail, and the endless and tiring assembly of putting metal loops through 400 charms. These awareness charms will be part of the free gift we are giving walkers this year. My parents were great sports, as we sat together for at least two hours working diligently on this project.

Coordinating a Walk of this magnitude is no easy feat! We are so grateful to our volunteers. Many of whom I contacted today, and though I am throwing last minute things at them, they are finding a way to make it work and happen. As we are three days away from the Walk, Ann (our walk chair) and I are now in constant contact. We typically converse daily anyway, but at some points now we are doing hour by hour check ins.

At lunch time, we had the opportunity to meet up with my friend, Amany. Amany and I went to graduate school together, and we have known each other for close to 15 years. Surviving a doctoral program required great support, and we helped each other through the process, the ups and downs, and the complexities of having children while studying, doing clinical work, and writing a dissertation. I have been troubled by some recent events in my life, many of which I do not report on the blog. But needless to say, for a good two hours today, the four of us chatted about things, and I had the opportunity to receive a lot of validation. During this lunch, I started off agitated, which seems to be my usual state this week, but as we continued talking, I began to unwind. It was a good escape, which was much needed today.

Peter sent me the e-mail below from the CEO of the Pork Barrel BBQ restaurant in Del Ray, VA. I am thoroughly moved by Brett's email and incredible support. So much so, that I wanted to share it with you, and to also introduce you to this new restaurant in Northern Virginia. Peter and I are very grateful for this support and we look forward to future conversations together.

----------------------------------------------------------------------------
We are honored to be a part, and I also made a donation via your website in support of the event and the mission. To help spread the word, we created a post on our site at http://www.porkbarrelbbq.com/blog/, shared a link on our Facebook page http://www.facebook.com/#!/profile.php?id=1084117735, and sent out a tweet to our 25,000 followers asking them to donate and attend at http://twitter.com/porkbarrelbbq. We would love to get together for coffee in the coming weeks to meet and see how we can support you and the Mattie Miracle Cancer Foundation.


Very truly yours,
Brett Thompson
CEO
Pork Barrel BBQ
http://www.porkbarrelbbq.com/
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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was delighted to see the sun this morning and I hope it holds for the walk on Sunday. Rain or shine you will bring your own "sun" with you in the hearts and spirits of those who support you, Peter and the foundation. The baskets you and the volunteers came up with look really amazing and I hope the raffles make lots of money for the foundation. I am sure posting the wonderful descriptions and pictures on the blog will help spur interest for them. I love the picture of you sprawled out on the floor. When I read all that you are trying to do in so short a time I can't imagine how you are continuing to drive yourself to get it all done. As I've said, as hard as it is, you have to take some time for yourself or you will collapse as soon as you sit down. I am glad to see everything coming together so well and I will continue to send my energy to you. I hold you gently in my thoughts."

May 19, 2010

Wednesday, May 19, 2010


Wednesday, May 19, 2010

This picture was taken last March in the Lombardi Clinic. Mattie just had his dosage of MTP, and was having a reaction. He developed a fever and rigors (which is essentially chills, but intense ones). Next to Mattie and I is Dr. Kristen Snyder. I chose this picture to post, because I am happy to report that Kristen had a baby today, a healthy boy named Conor!

Poem of the day: Saying Goodbye by Brenda Penepent

Go now, my child, the time has come.
All tasks today are done.
There are others waiting there for you,
And songs yet to be sung.
Go quietly, go softly,
Leave all pain and fear behind.
Today has left a part of you
In our hearts, our souls, and minds.
I’ll remember you, my dear one,
As I lay down to sleep.
I’ll remember that you made me smile,
Although, it makes me weep.
As you go to face your future,
As you go to touch the sky
Know that God makes all things possible,
Angels never die.
Go now, my child, the time has come.
All worldly tasks are done.
There are others waiting there for you,
And songs yet to be sung.

Today was another extremely long day. Ann and I met with the logistics team for the Walk this afternoon. We had a productive meeting and one of the things we discussed was what to do if it rains. This is not a topic I like discussing, and for some reason I feel that on a day that we come together to celebrate Mattie's foundation, that we should have SUN! But I realize that is not very realistic. NONETHELESS, Mattie's event is happening whether it rains or shines. Things are coming together for the Walk, and as always I am very grateful to our volunteers. Without them, this wouldn't be possible. We never forget that!

We welcome you to visit the Mattie Miracle website, as Peter has just posted two press releases that may interest you to see. I attached the link directly to them: https://www.mattiemiracle.com/News___Press.html

As promised, I posted pictures from our raffle item wrapping party last night. In the midst of wrapping, our friend, Catherine, was chatting with me about cancer. Catherine is a cancer survivor, and what I noticed is that some of her feelings and thoughts match my own. In many respects, I always refer to Peter and I as cancer survivors, because we intimately helped Mattie through his battle. However, one commonality Catherine and I shared was our need to close off and shut people out of our lives. I would say this has been most definitely true for both Peter and I. At first I was thinking it was only us, because when cancer hits certain families, it sometimes brings them closer together. This has not been the case for us, instead it has thrown many of us apart. What others need to understand is that we are no longer the same people we were two years ago. We have been severely altered, after all how could we not be after suffering multiple traumas (such as Mattie diagnosed with Cancer, Mattie in pain, the side effects of cancer, Mattie unable to walk and care for himself, and clearly the process of helping Mattie die)? It is one thing to read about what we experienced and quite another to have lived in it and through it day after day. A natural reaction after a trauma is to seek out safety, and that could mean retreating from the world for a period of time. I think what family and friends need to do is to have compassion and understanding. Not judgment, ridicule, and the projection of negative feelings upon us. The impact of cancer on a family has been a tragic lesson for us to learn first hand, which is why I feel that one of the missions of the Foundation is to provide social support to children and their families. Support which is unconditional. It is not an easy task by any stretch of the imagination, but one that I am willing to try to achieve as we work at helping one child and family at a time.

So the unveiling you have all been waiting for........... We especially want to thank Carolyn (our Raffle chair) and her committee for the outstanding work they did for the Foundation! They are featuring 8 wonderful items this year!

Left: This raffle item is entitled Pamper Me Package. It includes a day at the spa, and several other goodies. The beauty of this package is the intoxicating lavendar aroma that seems to be coming from the products wrapped inside!

Right: The second item is an Annapolis Sailing Excursion. Sail away for a fabulous day on the bay aboard the Windemere, a 39' sailboat docked in Annapolis.






















Left: This item is entitled, "Around the Town" and features gift certificates from many local restaurants and vendors.

Right: This package features Washington National Tickets (on Saturday June 19, Nats vs the Chicago White Sox), along with other fabulous Nat's gear!



Left: The Summer Fun Basket features everything you will need to keep the family entertained and excited all summer long (including SSSAS summer camp, baseball tickets, and top golf membership).
Right: As you can see this is a Washington Capitals Fan Pack, including tickets to a Cap's game and Caps autographed memorabilia!

Left: The Let the Sun Shine In basket features a designer handmade quilt, and various other sunny items.
Right: The last picture is NOT an item, but a statement. This was me after all the wrapping was completed!



I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am happy to see the end of the rain and I hope that the good weather continues through Sunday for the walk. You have so many wonderful things scheduled and I hope they all happen as planned. More importantly, I hope this gives pediatric sarcoma a much needed boost in visibility and raises funds for the cause. It seems like Tuesday was a really busy day for you and you got a lot of things done for the walk, however, it remains really important that you find the time and space to care for yourself as this project and the foundation will not make it without you. Today as I practice I will send you the energy to help you get the rest of the necessary tasks done and as I work on my balance, I hope you too work on your balance of mixing work and self in a good way. I hold you gently in my thoughts."

Tuesday, May 19, 2010

Tuesday, May 19, 2010 -- Mattie died 35 weeks ago today!

This picture was taken last year at the March for a Mattie Miracle. Mattie had the chance to talk to every baseball player on his school's team, and wish them luck before they headed to play a big game. I was told later by Coach Holm, that Mattie brought the team luck, because they won the game. That made Mattie very happy to hear! I am not sure whether these high school students reflect back on May 9, 2009 and their meeting with Mattie. But they should know that their greeting meant a lot to Mattie, Peter, and I.

Poem of the day: To Lose A Child by Susan Tawil

Tears without end
Days without nights
Night without day
Time without forgetting.
Food without taste
Sleep without rest
Sorrow without comfort.
Pain without limit
Emptiness without bottom
Life without.

It is another Tuesday behind us. This week marks the beginning of the 35th week Mattie has been gone from our lives. Tonight's poem says it all.... "life without." Once you lose a child it is impossible to see life without sorrow, pain, and emptiness.

Is is 2am, and I am just sitting down now to write the blog. Therefore because I am quite tired, I will be making this a short blog. It was a busy day of Walk related issues. This evening, I went to Ann's house for dinner and then had the opportunity to join Carolyn, Mary, and Catherine to wrap raffle baskets and items. Carolyn is a RCC parent and our friend, and she has done an outstanding job coordinating the raffle, and also securing such wonderful items. There are 8 items in the raffle: 1) Annapolis Sailing Excursion, 2) Washington National Tickets, 3) Summer Fun Basket, 4) Professional Portrait Package, 5) Around Town Gift Basket, 6) Let the Sun Shine in Basket, 7) Pamper me Package, and 8) Washington Capitals Fan pack. Ann took pictures of these baskets, which I hope to share with you tomorrow. They look as lovely as they sound. Ann's daughter Abigail sat down on the floor with me, and helped wrap at least two raffle baskets. She was quite a good helper, has an eye for color, and got into the spirit of the evening.

Today was a day of various insights to me. Tonight, as I sat with several preschool moms wrapping raffle items, I realize while they were talking about their children, it did not bother me as much as it usually does. Part of this could be because I am just tired, and don't have much emotional energy to spare, but I also think it is because these moms and I survived the preschool years together. Mattie's preschool was a co-operative. So parents played an active role within the classroom and the school in general. Resurrection Children's Center became our community, and spending time with children inside the classroom enabled me to understand their likes, dislikes, and in essence to form a special bond with some of the children. It is almost hard to believe that we all started off in the same classroom, but my little one no longer exists.

The insight I had from this raffle wrapping party was that here are a group of women giving up their evening to wrap gifts for the Foundation. They are NOT doing it for recognition, they are not doing it for praise. They are sincerely doing it because they remember Mattie and support Peter and I. It is very wonderful to be surrounded by this honesty and genuineness. As of tomorrow we are approaching a five day count down to the Walk. We can't thank all our volunteers enough for their amazing efforts, and of course we can't thank you all enough for registering for the Walk and attending on Sunday.
 
I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Thinking of you this Tuesday and everyday. I wish I could be at the walk this weekend... I will be thinking of you."
 
The second message is from my friend, Charlie. Charlie wrote, "It is another Tuesday. Today it almost seems the sky is crying. For me it helps to keep in mind that to grow as our flowers and plants do is to require the right balance of both rain and sun. Too much of either brings disaster. As you continue to work on the walk and all the tasks that are required for it, try to find some balance in your time; spend some time in self care, in doing something kind and solely for yourself. I agree with Margaret that Mattie's cancer had a huge impact on the community but it is by dint of your unceasing advocacy that it has not become part of the past but rather remained in the forefront of people's awareness. I am sure the walk will be successful in helping to continue that process. I hold you gently in my thoughts."

May 18, 2010

Monday, May 17, 2010

Monday, May 17, 2010

Tonight's picture was taken in May of 2009. Mattie was approaching the end of his chemotherapy treatment, and it was the thinking that we would have the whole summer to intensely do physical therapy to regain some strength. I think if you had told me Mattie was going to die four months later I would never have imagined it at the time. I can bearly understand it now. As you can see in the picture, the whole cast and crew were in place for Mattie to do therapy. Anna (Mattie's physical therapist) was pulling Linda (Mattie's childlife specialist) in the wagon, and my mom was pushing Mattie, and Katie (aka Dorothy - for her lovely red shoes) was monitoring Mattie's IV pole. It looks like Mattie was having fun, and he was, but Anna was actually getting Mattie to use his legs and feet to try to self propel. I have to honestly believe that Mattie stretched Anna's imagination as a therapist. However, she quickly assessed him from the beginning and understood that the way to Mattie's heart was through play and creativity. She did not disappoint.

Poem of the day: The bridge by Henry W. Longfellow

And forever and forever,
As long as the river flows,
As long as the heart has passions,
As long as life has woes;
The moon and its broken reflection
And its shadows shall appear,
As the symbol of love in heaven,
And its wavering image here.


It is past midnight, and I am just sitting down now to try to put some words together for the blog. It has been another busy day of Walk meetings and tasks to be completed. I am very thankful to all our wonderful volunteers who are giving of themselves and are committed to the cause. It is understandable why people were compelled to help last year, especially when you saw that cute seven year old face battling cancer. But what motivates many of the same people to return this year, charged to make this event successful? It is an interesting question, which I had the opportunity to ponder today with my two friends, Margaret and Susan.


Margaret, as many of my readers know, was Mattie's first preschool teacher at Resurrection Children's Center. I met Margaret at a time in my life where I needed support and validation of my parenting skills, and Mattie needed the nurturing and safe environment that Margaret and Lana provided in the Pretend Room. It was a winning combination for both of us. Mattie grew, developed socially, physically, and emotionally, and I in the process developed a dear friend. Susan, is a former student of mine. However, over the years, we developed a friendship, and she had the opportunity to meet Mattie several times. Susan knew Mattie when he was well, and then through various visits in the hospital, experienced Mattie with cancer. Susan and Mattie got along well, most likely because they have many similar qualities, they speak their minds, are free spirits, are good natured, and also when they need to get your attention.... they do it effectively. I selected Margaret and Susan to oversee the Foundation Table at the upcoming Walk.

This afternoon, Margaret invited us over to her house. This was the first time Margaret and Susan met, and over tea and treats we had a great visit. Margaret knows how much I love tea, and somehow when she serves it on her china and you can smell the fragrant roses from her garden, it is a lovely combination and escape. Margaret, Susan, and I chatted for about three hours. Our conversation did eventually turn to discussing the impact of Mattie's cancer on the local community. I suppose I am so insulated from others, that I no longer see the impact that Mattie's death and our work with the Foundation are having on the community. Not sure that I don't see it, or if my focus now is different. Margaret and Susan gave me a glimpse at how lives have been changed, how priorities have been shifted, and how pediatric cancer has been placed on the forefront of people's minds. Needless to say they gave me a lot to think about as Peter and I try to prepare a greeting for Sunday's Walk. 

Karen, my lifetime friend, sent me this word picture tonight. She created it on something called Wordle. She went through the blog and tried to capture salient words in our lives. I know you may not be able to see the words as clearly as I can from this picture, but through words and color she created an artistic representation of Mattie's life. It captured my attention and I wanted to share it with you!


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you had a productive day on Sunday and I hope you took some breaks as needed. It is so hard to believe that just a year ago we were coming up on the first Mattie Walk. He was still with us then and it is impossible to believe he will not be with us now. I do believe he will be there in spirit for you and for his friends. How could he not with so many who care about him, thinking about him and holding tight to his spirit in their hearts? As I read Dr Shad's email message I looked back at the logo and I realized that not only does it represent the sun but it also appears to be a bridge which is a wonderful symbol as well. A bridge to connect those who need with those who can help. A bridge over despair and sorrow to hope and healing. I wish you great success with the foundation and that it may come to be all those things to those who need and receive help. I hold you gently in my thoughts."

May 17, 2010

Sunday, May 16, 2010

Sunday, May 16, 2010
Tonight's picture was taken last May, right after the March for a Mattie Miracle. Mattie came back home and spent time with his cousins. Pictured from left to right are Nat, Will, Mattie, and Sydney. Despite Mattie having a full day outside at the March, he was still very excited to have this visit with his cousins, and to have time to play. In fact, when I look at this picture tonight, it just makes me cry. I miss Mattie's face, voice, and presence.
 Poem of the day: Invisible Words by Brenda Penepent


Invisible words hang in the air.
A silence loud and lingering.
Unrealized dreams and shades of despair
Overshadow material things.
Promises now, which can not be kept
Of forever and ever with you.
Feeling with sadness the change in our lives
And not knowing what to do.
Invisible words in invisible worlds
Streaming through my mind.
All of the things I might have said.
Innocence left behind.
Past, is the vision behind the glass.
So near, but unable to reach.
A separate lifetime, just a moment ago,
Silently I scream.

I had to read this poem several times tonight. It could be because I am simply exhausted that it made no sense, or maybe because it is too close to home, I did not want to actually identify with it. There are many times in a given day, when I reflect back on the past. My past with Mattie in my life. As the poem expresses, my past seems like "a separate lifetime, just a moment ago." In many ways, losing Mattie seems like a lifetime ago, and yet it is only 8 short months ago. There are times when I almost feel like I am living two very distinct lives. One in which Vicki was a mom, and now the current life in which Vicki is undefined.

Today was a day filled with Walk related tasks. I really did not venture far from home today, and we both worked solidly throughout the day. There were two bright spots to our day which I would like to share. The first of which was we received a call from Dr. Aziza Shad. Aziza, as some of you may recall is the director of the pediatric Lombardi Center Center at Georgetown University Hospital, and she was also the doctor on call the week that Mattie died. I will never forget Aziza's compassion and competency as a physician and how well she managed Mattie's end of life care. Aziza called us today to let us know how much she loved the Foundation's new logo. She commented that the logo is about hope, healing, and support. I couldn't have said it better! Aziza also let me know that she is planning on attending the Walk and is also bringing her three children with her. Peter and I are very honored to have her support, as well as the support of many nurses, Linda (Mattie's childlife specialist), and Denise (Mattie's social worker) at the Walk. It is like a family reunion, except none of us are related, accept through the amazing bond we had with Mattie.

Tonight while Peter and I were having dinner outside, we looked up at the sky and we saw a bright star. In fact we saw this star in the same place last night. It was the only star visible to us, and it almost begged us to look at it. I told Peter this is Mattie's star, and it is my hope that he has been looking down on us the past couple of days, as we work quite diligently to put together a Walk in his honor.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was so glad to see that you (aided by Peter) took my advice and took a break from the planning to walk for a bit by the Potomac. We often don't realize it but if we continue to work too long at something we get less and less focused and the quality of what we do suffers. Taking a break, enables our minds to clear and come back to the task at hand. As you said, grief is a very personal emotion. Even if two people are grieving the loss of the same person, the way they react, the situations that cause distress can be, and usually are different. The key to surviving the grief process is not to judge your own or others emotions as right or wrong. I know you feel lost, that you don't have all the things that used to keep you busy and productively occupied. As you feel stronger and more centered you will be able to put SOME of these things back into your life. The idea is not to just pick them all back up without thought, but to evaluate them and add back the ones that really have worth and meaning for you. As you begin to move forward I send you the energy of my practice to help you overcome the emotional obstacles you confront. I hold you gently in my thoughts."