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

April 17, 2010

Saturday, April 17, 2010

Saturday, April 17, 2010

Tonight's picture was taken in August of 2009. Linda (Mattie's childlife specialist) arranged a special event for Mattie and his buddy Abigail. Mattie and Abigail spent several hours in the Lego store at one of our local malls. However, the special part about this was they were in the store when it was closed to the public, because it was after store hours. They worked with two Lego master builders and though Mattie was in a wheelchair, he managed to find the energy and the resources to self propel and maneuver his way to the Lego bins to get the pieces he needed to design a New York City Taxi. This Taxi is still assembled and in our living room. As you can see from this picture, Mattie was ALL business and very focused.

Poem of the day: Beyond The Grave by M.S. Lowndes
How do we convey
Just how we feel
When we lose someone we love?
How do we explain
The deep, lonely pain
The emptiness left in us?
No words can express
The hurt and anguish
Nor touch on how we feel
God shares our tears
And gives us His love
And He, in time, will heal
The hopes and the dreams
We had just remains
Like an unfinished book of their life
As an incomplete chapter
Remains unfinished
With nothing more to write
But we can know God’s comfort
And know there is hope
With a new chapter to begin
We can hold on to God
For He loves us so much
And fills the void within
As we close one chapter
Another can begin
Though the one we love has gone
Through Christ’s strength in us
And hope in our hearts
We find courage to carry on

As I was uploading pictures to the blog tonight, I was staring out the window. I saw none other than "Mattie Moon." Actually just a sliver of Mattie Moon is out tonight, and I couldn't help but daydream about Mattie. Though I know this is physically impossible, I looked at the moon, hoping to see a little boy sitting on it and looking back at me. Naturally I had no such luck, but I can never look at the moon now without thinking of my courageous son who battled a disease that seems even too horrific for the creators of science fiction movies.

I had the opportunity today to spend the day with Mattie's art teacher from SSSAS. Many of you may recall that Debbie and Mattie got along quite well, and they appreciated each other. Debbie nurtured and inspired Mattie to create the beautiful three dimensional painting entitled, Mr. Sun (the logo for the Mattie Miracle Cancer Foundation). Debbie invited me on a garden tour at the Hillwood Estate, Museum, and Gardens. Hillwood was an estate owned by Marjorie Merriweather Post in the 1950s. Ms. Post came from a very privileged background, considering her father was CW Post, the Founder of the Postum Cereal Company and an innovative entrepreneur. Ms. Post married and divorced four different men, one of whom was EF Hutton, and another whom was Joseph Davies, the US Ambassador to Russia. It was at that point that her love for Russian porcelain and art started. In fact, her estate was created as both a retreat and a living museum. Her guests came not only to socialize, but to see her extensive art collections and tranquil gardens. In fact, she designed her rooms and gardens to complement each other. So if you were in a room of her house designed in a French style, rest assured that the garden this room overlooked onto, would also reflect the horticultural traditions found in France. It was a very memorable trip today, and the gardens were simply breathtaking. While on the garden tour, we went through a garden entitled, The Friendship Garden. This was a garden literally built for Ms. Post as a generous gift from 170 of her closest friends. It was quite a garden, and in the center of the garden was a beautiful carved stone with the following quote carved in it: "Friendship outstays the hurrying flight of years and aye abides through laughter and through tears." I found this quote very meaningful and of course I can't help but apply it to my life.

Through Mattie's illness and death, I have developed some incredible friendships. However, I admit that I have not discussed this on this blog before, but I have also lost close friends in the cancer process. In comparison to losing Mattie, the loss of my friendships do not compare in terms of the pain. Nonetheless, it does compound the pain and in essence I have learned that some friendships do not outstay the "hurrying flight of years." Which makes you re-evaluate the hallmark of a good friendship. To me, time used to be key factor in determining a true friendship. Mattie's battle with cancer however, has caused me to rethink the whole meaning of friendship.

But I digress. Debbie and I covered a lot of territory today. We did a 90 minute garden walking tour, and then we had a lovely lunch filled with conversation. Debbie has a gift for conversing and sharing her wealth of experiences as a person and as an artist. We then moved on to a self guided tour of the estate. At the end of the day, Debbie handed me a gift that was designed by her neighbor for Peter and I. When I opened it, it was a hand drawn portrait of Mattie. In fact, the portrait was developed from Mattie's first Christmas picture that I have posted on the blog. It was a very touching gift that Debbie framed for us. This portrait captured Mattie's energy and spirit, and I am deeply moved that a person who never met Mattie, wanted to give me such a gift.

I took a few photos today that I wanted to share with you. The photo in the center, is of the Japanese-style garden. Our guide explained that a typical Japanese garden would not have a raging waterfall flowing down the center of it, like at Hillwood. Japanese gardens are designed for peacefulness and connecting in a spiritual manner. However, Ms. Post liked the esthetics of a waterfall, and therefore that explains why it was added. 


Left: The actual Hillwood Estate. Notice the blue outdoor umbrella and chairs. This was the actual color Ms. Post selected for her outdoor furniture. Naturally that would have been fine if she were by the beach or a pool, but the stark blue seemed to jump out at you in this serene setting.

Right: I was captivated by the purple rhododendron and azalea bushes right next to each other.


Left: Ms. Post spent the spring and falls at this estate (she had three other properties, one of which was a private yacht called the SeaCloud), which explains why her plantings and trees highlight these seasons. She had beautiful display of tulips, which just jumped out at you to let you know it is spring in Washington, DC.  
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It seems the plans for the walk are going well; the logistics of it are amazing and the Ann and the others who manage it are incredible. Tom and I are looking forward to again being a part of it and donating items for the raffle and/or the auction. I have been keeping the GWU counseling alumni updated via the listpost that Jared maintains and I hope we again have a good showing from that group. As I've said before, Mattie (and you and Peter) are a pebble in the water, creating ripples that spread to places you can't even imagine. How lovely to receive that confirming letter from Jeanne to tell you that your words are not going into the void but into the hearts and minds of caring, loving people. In so many ways, we often remember and honor Mattie's memory and spirit, from the "bugs" on the glasses, to planting of forget-me-nots and all sorts of other lovely and creative things. Today as I practice, I will send the energy to help you with the planning and preparation for the walk; I know it will be a success! I hold you gently in my thoughts."

Friday, April 16, 2010

Friday, April 16, 2010

Tonight's picture was taken in August of 2009. As you can see right next to Mattie is a cockroach constructed out of paper. I am not sure what Mattie loved more. The bugs themselves, or the sheer terror bugs generated in me. Either case, Mattie had this huge roach sitting next to him, and in his hand he was holding an enormous fly swatter. Ann got these fly swatters for Mattie's "bug" birthday party. He loved the whole notion of this fly swatter, and he was encouraging me to use it to get rid of this pretend roach. This conversation generated many smiles and laughs for Mattie. Which naturally was my main goal.


Poem of the day: Death is nothing at all by Christina Georgina Rossetti

Death is nothing at all.
I have only slipped away into the next room.
I am I and you are you,
Whatever we were to each other, that we still are.
Call me by my old familiar name,
Speak to me in the easy way which you always used.
Put no difference in your tone,
wear no forced air of solemnity or sorrow,
laugh as we always laughed
at the little jokes we enjoyed together.
Pray smile, think of me, pray for me.
Let my name be ever the household word
that it always was.
Let it be spoken without effort,
without the trace of a shadow in it.
Life means all that it ever meant,
it is the same as it ever was.
There is unbroken continuity,
why should I be out of mind
because I am out of sight?
I am waiting for you
somewhere very near
just around the corner.
All is well

I had the pleasure of meeting today with the May 23rd walk raffle committee. The leader of this committee is Carolyn, a fellow RCC preschool mom and our friend. Carolyn's daughter and Mattie were in the same preschool class. Carolyn has been a wonderful Team Mattie supporter and a faithful blog reader. Ann and Liza (another SSSAS mom and friend) also attended this meeting, and it was wonderful to hear these women brainstorm ideas for the logistics of this raffle as well as what items should be raffled. I continue to be amazed by the generous spirit of those in our community, and how they continue to walk this very challenging journey with us. In many ways, I find this level of commitment and love overwhelming and deeply touching. Through Mattie, I met some incredible moms and dads, who I wouldn't have had the opportunity to meet without having had a child. To our Team Mattie supporters what can I say?! Just know I am grateful you are out there keeping Mattie's memory alive, and in the process stand committed with us on our journey to fight pediatric cancers.

I had the opportunity to pick up the mail in our Foundation's PO Box this afternoon. Tonight when I got home, I went through some of the letters. One letter in particular stood out to me because it was from someone who did not know Mattie, or my family. This is a family who learned about us through the blog and clearly has continued reading it for nine months now. Naturally I am very moved when our friends and family read the blog, and continue to show their support. However, I am left speechless when I learn that people who never met us read the blog and care about our family, so much so, that Jeanne would take the time to write a hand written note, and send along a generous check in memory of Mattie's 8th birthday. I would like to share a portion of Jeanne's letter with you.

Jeanne wrote, "I became aware of all of you last August 10, and have followed your blog each and everyday. Thank you for sharing. You are always in my prayers. My sincere sympathy for all you have experienced since July 2008. Nobody should have to experience what you have. God never promised we would never be hurt. He just promised he'd be there to help us get through it. Charlie always seems to say the right things and Ann knows just when you need her. I thanked God on September 8, that Mattie was free of suffering and pain and now his soul and spirit are living in perfection. Mattie sounds like he lived his earthly life to the fullest. He certainly had wonderful parents. I have so much enjoyed the pictures you daily share. He gave you some wonderful memories. I pray you can concentrate on the happy memories. I never met Mattie but when I see a penny on the ground or hear a wind chime ringing, I think of Mattie and I will never forget him. How wonderful that other children will smile more because you shared "the toys." What a wonderful expression of love. I want to celebrate Mattie's birthday with a small gift to your Foundation. My prayers for both of you are that laughs and smiles will someday out weigh sadness and tears."

Thank you Jeanne for writing us this letter. It meant a great deal to Peter and I. I have to believe that Mattie's death was for a reason. Perhaps it is to unite our communities behind a vital and imperative cause..... the cure for pediatric cancers. Nonetheless, as a blog writer it is always hard to determine if my messages are really getting out there to others. I know our website generates around 300 hits per day, but again this is just a number. When I receive a letter like Jeanne's it helps verify that my feelings and thoughts are being heard and even processed. That Mattie's death has caused others to pause, re-evaluate life, and most importantly understand that childhood cancer is not going to go away anytime soon without a great deal of advocacy, research, and funding to attack this disease.

Peter and I had a lovely dinner tonight at Ann's house with her family. We ate outside on her deck, and enjoyed the liveliness of her children and the beauty of being surrounded by plants and trees. Ann showed me a set of drinking glasses that she purchased today. She asked me to guess who I think would have approved of them. So I looked at them, and there were dragonflies and other bugs etched into the design of the glasses. Naturally, I said Mattie. I was touched that Ann would make such a purchase that keeps Mattie's spirit and joy for humor and bugs alive and well!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad that yesterday was a peaceful day and I hope that today is as well. Nature is so healing, sometimes I am carried away gently on the birdsong in the early morning or the feel of the spring breeze when I stand outside with my eyes closed. I hope you can still find that in your space. I saw the picture you posted on the blog and your explanation and I remember reading about all the nights spent in the tent and how it took up almost all the space in the room. I saw the tent as your love and caring spread over Mattie like a shelter from a storm that could only be kept at bay for a while; but while it was, it was his place of peace and safety. I agree with Susan that the only way Mattie could go on was to have hope, to work at trying to be strong in all ways. Otherwise I believe he would never have made it as far as he did. As always, when I practice, I send you my energy and my thoughts of peace to help you through your day. I hold you gently in my thoughts."

April 16, 2010

Thursday, April 15, 2010

Thursday, April 15, 2010

Tonight's picture was taken in August of 2009. At this point Mattie was very sick and we knew his cancer had metastasized. Mattie had always wanted to go on a camping trip with Peter and some of his buddies from school. Peter was actually planning such a trip the summer of 2008, but it never materialized because Mattie was diagnosed with Osteosarcoma. However, in August of 2009, Peter took out his huge tent, and set it up in our living room. It took up the living and dining rooms. Each night that Mattie was home from the hospital, we slept in the tent. Peter took a picture of us one morning still sleeping. During Mattie's treatment, he did experience medical post traumatic stress disorder. The stress and anxiety associated with sleeping never dissipated. So there were many nights, I would sleep right next to Mattie to assure him that everything was going to be okay.


Poem of the day: Some days by Charlie Brown

Some days I can smile
Some days are filled with tears
Some days I want to hide
On others, I can face my fears.
Some mornings I can't
Get out of bed
Or face the fact
That you are dead.
That word, I said it
It makes me cry
It breaks my heart
And tears me inside
I'm still searching
For something to do
That will fill the emptiness
Of the loss of you.
Every day brings
A brand new pain
And I have to face
Your loss again
One day I hope
I come to find
Something that engages
Both heart and mind
Then my sorrow can ease
And I will be
On the path to hope
That is the key.

As Charlie's poem highlights so well, the loss of Mattie for Peter and I is revisited every day. We face this pain head on every morning, and it is the last thing we think about before going to bed. Life as we knew it is no longer, and even though you would think this reality would sink in, it is still hard to take.

I spent a good portion of my day outside in Ann's backyard. I am helping Ann with plantings. Being outside is so needed for both Peter and I. We spent so much time trapped in a hospital room, with a lack of fresh air, that I still believe our bodies are trying to recover from this trauma. I still remember the days in the PICU, staring outside the window, looking at students passing by living their lives, and wishing this could be true for us. The outside quickly began to represent freedom to me. So in essence I spent several hours today in a peaceful setting, surrounded by birds and trees. While going through one of Ann's flower beds, I was pulling out weeds, and saw something very familiar to me. There within the dirt were Legos. Clearly her children had once been playing with Legos while near their swing set. Though I wasn't there to witness this scene, the Legos, helped me imagine the fun they must have been having outside. Naturally I couldn't help but also think of Mattie when I saw these Legos. Mattie must have built almost every Lego set possible during the 15 months he was in the hospital. I have great fondness for Legos, and despite Mattie not physically being present in our lives, we are still surrounded by many of his Lego creations.

This evening, I got together with Ellen (Charlotte's mom) and Junko (Kazu's mom, and also our friend who would give me massages each time she visited the hospital) for dinner. We all had a nice time chatting, sharing stories, and catching up. Ellen invited us to the play, Master Class, starring Tyne Daly. I had seen this play many years ago with Peter and my parents. At the time, the lead character was played by Faye Dunaway. I practically grew up watching Cagney and Lacey (a TV series about two women police officers, one of which was played by Tyne Daly). However, I did not know that Tyne Daly was also a gifted stage actress. One immediate observation about all the actors and actresses on stage tonight was they did not have to use a microphone. Their voices were strong and naturally projected out into the audience. A rare occurrence in theatre today. The story was about the life of Maria Callas, a world renounced opera singer. What I imagine made her so unique was not necessarily her voice, but the bold, courageous, and highly expressive nature of her presentation. For her just singing, demeaned the art form. She believed that it was vital to understand what she was singing about, in order to be able to act out and express what the composer beautifully wrote into the music. She felt that anyone could sing, but to capture the hearts and minds of your audience through music was the true sign of talent and success. She was a woman who clearly lived a very focused and driven life to achieve success at the expense of happiness, love, and a family. The play was very effective at highlighting this opera singer's intensity, drive, determination, ego, as well as her paranoia and loneliness. This play inspires you to learn more about Maria Callas, and to also appreciate the art form of opera.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It seems Wednesday was a "wrap around" of Terrible Tuesday. I am sorry to hear that. I do think you are on the way to finding the key for yourself; your response to "I need you to get up" speaks volumes to me as it should to you. You need to be needed. Most of us do, but you more than most since it suits who you are and you have made a career from being a carer and teacher. If you are to make it in the long haul, you need to find the place(s) where you are needed and can give of your multitude of skills and strengths. Today as I practice I will send you the energy to help you find the strength for that search. I hold you gently in my thoughts."

The second message is from my friend, Susan. Susan wrote, "I was reading your blog from the last couple days, but the one that really touched me is the one from Tuesday where you said "Yet despite that, he put up with our insistence to do physical therapy, and even when he said he did not feel like moving, he complied and gave it his all. For some reason I saw this in a totally different light this morning, Perhaps Mattie drew hope and inspiration from your insistence. It gave him hope for his future. If you had known the how soon you'd know the outcome of this ordeal perhaps you wouldn't have been so insistent, and what would have filled his days then? Just laying around?? That was SO not Mattie. Through your actions you and Peter gave him hope by giving him a goal to work toward. Without something to work toward it's almost like the quote from Dante "abandon all hope ye who enter here... The other thing that struck me was when I wrote your name on the email. I'm sure you know your name means Victory (no surprise there), Matthew comes from the Hebrew name Matitya meaning "gift from G-d" again no surprise. And Peter means "the rock." Put the three of you together as a family unit, and you are like a rope. Woven together as a family you became very strong which is why you have weathered Mattie's sickness as a family. And now the rock and victory are left. With victory leaning on the rock, for now but when the time is right (meaning when you are ready), then victory over all the sadness, and grief will emerge. I know this about esoteric but I hope you get the drift. I hope today is a day full of love and blessings for you."

April 14, 2010

Wednesday, April 14, 2010

Wednesday, April 14, 2010

Tonight's picture was taken in August of 2009, a month before Mattie died. As you can see Mattie was driving Speedy Red, and had a big smile on his face. Because I was unsure if Mattie would be able to drive without assistance, I was his co-pilot. I could bearly fit into the car, but when there is a will there is a way. Mattie was an excellent driver, actually a natural. He understood the art of acceleration and how to slow down when making a turn. After a few tries at driving, Mattie could literally ride by himself. Toward the end though, he was driving with oxygen attached to him, so despite his efforts for independence, there were times where I insisted on riding along side him. I miss my driving buddy, but I am so happy he had these last moments of happiness and excitement. Mattie never got to take advantage of his wish from the "Make a Wish" foundation. Typically after a child completes chemotherapy, a family can request that their child with a life threatening illness be granted a wish. Unfortunately after Mattie's chemotherapy was completed, six weeks later, we learned that his cancer metastasized. Mattie never had the chance to fulfill a wish, so I am glad Speedy Red was something that brought Mattie some joy in the end. In fact, Mattie died one week before we were going to take him to the beach. Another foundation gave us a beach house for a week in September of 2009, but it wasn't meant to be.

Poem of the day: I miss you by Charlie Brown


In the silence of the early morning
I miss you
In the quiet of an evening
I miss you
In the songs of the birds
I miss you
In the laughter of children at play
I miss you
Silence or sound
Thoughts of you surround me
I miss you.
In the rising of the moon
I miss you
In the colors of the sunset
I miss you
In the riotous colors of spring
I miss you.
Light or dark
Thoughts of you are with me
I miss you
I am reminded of you by the things you
Used to do
I am reminded of you by the things you
Did not get to do
My world is filled with the loss of you
But
Somewhere, sometime, somehow
I will remember you with joy
For the brightness you brought
For the love you inspired
I will remember.

As many of my readers know, I had a hard day on Tuesday. That feeling seemed to carry over into the morning. When I began to wake up today, the first thought on my mind was that I did not want to get out of bed, and there really wasn't a reason to do so. It is in moments like this then things seem absolutely hopeless. Despite how sad I felt, I always know I have three people who are constantly there to monitor and support me the best they can. The first of course is Peter. Peter called me this morning, and found me crying. I did not have to say much, because he could see I went to bed in that state, and woke up in the same way. Peter told me he called to check on me, and to let me know he understood and cared. I heard him, but really couldn't talk, I was too overwrought. In the midst of deciding whether to get up or not, Ann was text messaging me back and forth. She was concerned about me, and was going to come over and she suggested we could sit outside together. But it is what she wrote in her message that got me up today, and she wrote, "I need you to get up." I am not sure why those three words, I need you, made such an impact on me, but they did. I think at our very human core, we all need to be needed. To serve a purpose. The third person in my life that follows me throughout the day is my lifetime friend, Karen. Though Karen lives in NY, we pretty much know how our days are going thanks to the beauty of our Blackberries. Karen has been trying to help me understand why I am feeling this heightened sense of sadness this week.

I spent the day with Ann. She is in the process of getting ready for spring and her daughter's holy communion party. With that comes fun projects which I like, involving the rearrangement of furniture, and new accessories for parts of her home. One of us in a store is bad enough, but together it truly is a comedy show. I think buying a product without opening it up and seeing if you like it and whether it actually matches with other items you want to purchase is a mistake. So I literally was unfolding quilts in the middle of a store, and picking out pillows to match the quilt. Somehow, in our quest to find the right thing, the process is truly down right hysterical to watch and to experience. It was a busy day, and it certainly was a much needed diversion from the profound sadness I lived through Tuesday afternoon into this morning.
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am sorry that yesterday was a tough day. Grief is a roller coaster with ups and downs and yesterday was clearly one of those down times. I am glad you had people around you who care, who understood and who could offer what was needed (hugs and not words). Tuesdays seem to be the worst of the week; I am beginning to think of them as "Terrible Tuesdays" and wish them over and done for you each week as the day arrives. I do hope that at sometime later on that feeling changes and Tuesdays can just be Tuesday again. I really appreciated your mom's story and the picture; I do think that Mattie is somewhere out there, probably doing his apprenticeship as an architect in a spiritual zone and that we will get to see his next level of creations someday. As I practice today I will send you the positive thoughts and the hope that it inspires in me; I hold you gently in my thoughts."

April 13, 2010

Tuesday, April 13, 2010

Tuesday, April 13, 2010 -- Mattie died 31 weeks ago today.

Tonight's picture was taken in July of 2009. Two months before Mattie died. Looking at this picture it is almost incomprehensible to believe that Mattie's body was being taken over by cancer. We just did not know it at the time. Yet despite that, he put up with our insistence to do physical therapy, and even when he said he did not feel like moving, he complied and gave it his all. I just want to impress upon you the feelings of hope we all had at that point in time. Mattie had completed his chemotherapy regimen in May of 2009, had all the surgeries behind him, and the goal was to gain strength and mobility to get ready for school over the summer of 2009. After over a year of torture, we thought we were finally going to get some sort of break. The funny part of living with cancer is that in the back of your mind there is always the sickening feeling that it will return, at least with multifocal  osteosarcoma, it is just a matter of when. We quickly learned that a break was not in our future plans for Mattie. Instead of trying to rehabilitate Mattie in order to return to school, we had to learn a whole new world of palliative care and death and dying. When your hope is crushed like this, I can tell you it is very hard to restore it. In fact, hope is not a word I use in my vocabulary for the most part now. What I do see in this picture is that Mattie had an incredible spirit and will to fight for life. This was not only evident in how he handled physical therapy, but also in the manner in which he died. Mattie did not want to die and fought the process for hours, until he was heavily sedated. As I reflect on Mattie's death today, and the loss of his presence on this Tuesday, I can't help but be reminded of that horrible dying process.

Poem of the day: Did you? by Charlie Brown


Did you know
Did you have a clue?
I suspect you did
Because you're you.
I could not bring
Myself to say
You would not be
With us, always.
I'm sure you wondered,
How could you not,
When we gave you "Red"
There on the spot.
So we all pretended
And shared hope and love
And waited for a miracle
From up above.
It did not come
And you had to go,
But we loved you so much
That you certainly did know!
 
Today marks the 31st week that Mattie has been gone from our lives. Somehow Tuesdays are just complicated days for me. I did not sleep well last night, and that seemed to contribute to my oversensitivity today. As the day wore on, I found myself crying at least four different times. In fact my lifetime friend Karen asked me what in particular brought this on, and my response was nothing in particular. I gave her a laundry list of reasons I could be feeling this way, but it simply wasn't a happy day.
 
I began my day by meeting Katherine at Georgetown University Hospital. Katherine was one of Mattie's HEM/ONC nurses, and now serves the role as the HEM/ONC nurse educator. Katherine and I discussed the May 23rd walk that the Mattie Miracle Cancer Foundation is planning, and what role the nurses can play in the event. We would love for the nurses to participate in our educational awareness component, especially since educational awareness is one of our Foundation's goals. We had a productive meeting and feel as if the inclusion of Georgetown will be a great addition to the walk.
 
After that meeting, I then headed to Alexandria for a meeting with the Walk's Logistic committee. We did a walk through of the location for the event and discussed crowd flow and other vital components of the walk. It too was a very productive meeting, and it helped me envision how the event was going to be run. However, I did start the meeting off by telling the committee members that this was a hard day for me. When I am emotionally in a fragile place, it is some times hard for me to absorb information. At the end of the meeting, Tamra who sits on our Foundation board, is on the logistics planning committee for the walk, and is also our friend, came up to me and gave me a hug. Some times hugs are indeed better than words. As Tamra held me she also said that soon the day would be over, and tomorrow would be a brand new day. Tamra understood that today being Tuesday, was a hard day for me, and she wished me hope for a better tomorrow. I reflected on her hug, and the importance of this type of love in one's life. There are times, especially when I am having a bad day, that when you hug me, I can easily begin tearing up. Which is what happened this afternoon. Tamra has given me hugs under the most trying of times. I told her in an email that I will never forget her visit to the hospital on the morning of September 7 (a day before Mattie died). Tamra walked into Mattie's PICU room, dropped off hot tea and coffee for Peter and I. She did not have to say a word, because it was evident Mattie was very sick and dying. She came over to me, hugged me deeply, turned around and left the room. This interaction will always remain in my mind and heart. Because NO words were necessary. She was able to communicate the feelings all non-verbally. This was a powerful interchange, and clearly made an impression upon me, since I am sharing it with you tonight.
 
I spent some time with Ann this afternoon too, but I could tell I was dwindling and came straight home. When I got home, I attempted to do some things for the walk, but I quickly realized I just had to lie down. When Peter got home from work, I did not feel like moving, and he could also tell I did not feel like talking. He gave me my space, checked in with me a couple of times, and even made dinner. When these waves of sadness come over me, they are upsetting and also paralyze me.
 
In the midst of how I am feeling, my mom sent me an e-mail tonight with a message entitled, A Ray of Hope. There is that word that I no longer relate to, and yet it is clearly something I wish to find again.
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A Ray of Hope By Virginia R. Sardi

Over the week-end Mauro and I attended a Saturday evening mass at St. Francis Xavier, a church in our parish, and the homily given by the priest, since it was the week after Easter, focused on the promise of an afterlife made possible by Christ’s death and resurrection. I thought of Mattie and I tried to contemplate what renewal of life in a spiritual state in another dimension, time and space meant for him and whether he had at last found the peace and happiness he so eagerly sought in this life but that was denied him in his final days on earth. If anyone should be with God in paradise, I reasoned, surely it should be Mattie, an angel with a mystical smile and a generous and open heart who brought so much happiness and understanding to all lucky enough to know him in this life. I felt a strong desire to know how he was doing since if Mattie’s spirit in the afterlife was anything like the Mattie I knew, he would surely make a difference in his new eternal home and he would definitely have a strong opinion about the transformation and a reaction to his surroundings. What I really wanted was some sign that Mattie was at peace and felt free to be himself in his heavenly home. I guess I allowed myself to indulge in a metaphysical romp in an effort to stay connected to Mattie in any way I could, even if I had to wander into what some may think of as the “Shirley McLain” supernatural zone. However, after mass, we came home and it was time to prepare dinner. The real world kicked in and I quickly changed gears and went upstairs to my bedroom to change clothes to prepare myself to work in the kitchen. It was about sunset when I went upstairs to the bedroom and observed how dark it was, as the shades were drawn. However I noticed a powerful beam of light coming through the space between one of the shades and the window it was covering in the bedroom. When I followed that remarkable beam of light, glowing brilliantly in the dark, I noticed that it landed squarely on Mattie in a photo given to me by his parents. In the photo (as you can see in the picture on the left), Mattie shining face was illuminated and aglow and in contrast to the rest of the room. He stood out like an angel surrounded by sunlight against this blackened background revealing a luminous smile and a mischievous look of merriment. I thought of “Mr. Sun,” Mattie’s creative interpretation of what the sun meant to him and it was very fitting to see him surrounded by a flood of sunlight. It was a compelling moment and it almost felt as if Mattie was communicating his intense happiness through this magnified, unique and solitary beam of light that glowed in my darkened bedroom. I stared at his face for a long time and felt a sense of contentment at this “evidence” that Mattie finally found the peace that had so eluded him in his final fatal moments of life. I have gone into the bedroom on other occasions at about the same time but have not seen that magical beam of sunlight. After all, he was our nature boy here on earth and often expressed his emotions and feelings through his love of nature. Why wouldn’t he do the same thing now? Could it be that a strategic beam of light was sent that evening as a special message and awakened a promise of hope in our hearts that our precious angel has finally found the joy and happiness he so richly deserved at long last?
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I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, "Dear Vicki and Peter-- Just a short, but sweet, note to say that I am thinking of you on this Tuesday and every day. Much love."

The second message is from my friend, Charlie. Charlie wrote, "You did your best. You loved Mattie with a spirit and a will second to none and he certainly knew that. Mattie had tremendous courage and he faced things many of us would quail at. What I do know in my heart is that he no longer is in pain; that he is a part of all that is good in the world and that you should be proud of both him and yourself. I've been listening to the birds this morning and they just keep singing as if to lighten everyone's morning. I hope that hearing the sounds of nature and Mattie's splashing fountains lightens your day. As I practice today I will send the strength I find to help you as you continue to plan for the march and the foundation. I hold you gently in my thoughts."

April 12, 2010

Monday, April 12, 2010

Monday, April 12, 2010

Tonight's picture was taken in July of 2002, when Mattie was three months old. The irony with Mattie was he did not like being confined, but he also did not like too much freedom. As a baby, Mattie strongly disliked floor time. It did not matter what you put in front of him to distract him, he simply did not care for lying on his back, and most definitely did not care for "tummy" time. He never liked lying on his tummy, and I would have to say this was a position he did not care for even up to age seven. There was something about it that made him feel uncomfortable and a lack of control. So what I am trying to say is we do not have many pictures of Mattie like the one displayed tonight. Before Mattie developed the muscles in his back and neck, we would prop him up on the floor sitting up, with pillows all around him. He was a sight to see, but preferred sitting up regardless of the method that got him to that position.


Poem of the day: Memories by Charlie Brown


I walk through our home and see
Memories of you and me
You as a baby learning to walk
You as a toddler beginning to talk
Growing so fast it was hard to see
How tragedy would strike you and me
Here is your bicycle that you learned to ride
And the stuffed animals you kept at your side
The special trains you loved to see run
The fountain with water that sparkled in the sun
So many memories and yet they're so few
Just seven years and no more with you.
So far I can't move these things from their space
This is something I am just not ready to face
But slowly, so slowly I am beginning to accept
That all of these things I insisted we kept
Will never again, be played with by you
And the memories will be in my heart, that's true.

I appreciate the e-mails I received today regarding my posting last night about Speedy Red. Just to recap, Mattie had a deal with Peter and I. If he complied with physical therapy and learned to take a few steps, his reward would be Speedy Red (a ride-on battery powered car). However, once we learned that Mattie's cancer metastasized, we bought the car and gave it to Mattie. I am sure Mattie pondered why we gave him the car when he hadn't completed his end of the deal. However, we never discussed this, nor did we dwell on it. We just wanted him to be happy in the moment, and to feel free to ride and drive this car. I expressed last night that this has weighed heavily upon me. I should clarify, the mere act of giving Mattie the car has never weighed heavily on me. What has, is the fact that we never discussed with him that he was dying. I think he actually understood this better than I did! In fact, the day before he died, in his garbled voice toward the end, he said, "I'm dying!" That actually took me aback, because we never used that term EVER with Mattie. But he knew, he confronted something at age 7, that I couldn't even talk about, much less accept. What a remarkable boy he was. But I have been second guessing my decision to not confront this issue with Mattie. Maybe he was scared, maybe he was unsure, and I did not give him the opportunity to work through those fears. That of course is my mother's guilt coming through. But as I have been reflecting on this all day today..... I have to be at peace with the decision I made. Confronting the issue of Mattie dying while receiving Speedy Red would have defeated the purpose. The purpose of this special gift was for him to be happy and enjoy that moment. To be a child, not a child with cancer! There is no way we could have accomplished this if we were talking about his pending death. Frankly this is not a topic I feel any parent is equip to have with their child, much less a child who is dying.

I spent a good part of the day today at Ann's house. I am helping her with her garden, and I am happy to report things are looking very springy in her front yard. While planting today, I felt I was surrounded by birds, blue jays and robins in particular. There is something very peaceful about focusing on plants and flowers, and creating a beautiful finished product. Ann and I had lunch and ran chores together. We hadn't seen each other in a few days, so somehow there seemed to be a lot to catch up on. Though I don't come out and mention it specifically, I am sure my readers can discern that Ann is an amazing friend to me who keeps me grounded on a good day, and offers a ray of hope on my numerous bad days.

I had the opportunity to see Ellen and Charlotte today. Charlotte and Abigail take ice skating lessons together, and I have no doubt that if Mattie saw Abigail and Charlotte together this would have brought a big smile to his face. Mattie was very fond of both of these girls, and hearing Charlotte's giggle today, reminded me of all the times Mattie got her to laugh. It is funny how a laugh can take you back in time. I literally associate Mattie with Charlotte giggles. He was a pro at getting her to laugh! Naturally I do not get the opportunity to see Mattie's friends like I used to. Nonetheless, time hasn't stopped for them. They are getting taller, brighter, and are developing. They are physically changing, but one thing remains. Their memory of Mattie is alive and well.

I am headed to Georgetown University Hospital tomorrow to meet with one of Mattie' HEM/ONC nurses. Katherine is now a nurse educator at the Hospital, and we are going to discuss the upcoming walk, nurse participation at the walk, and how to raise awareness for pediatric cancers. Mattie's nurses were prominently featured last year at the walk. Though their role has changed for us this year, their place in our hearts and minds has not. We learned so much from them, and I believe it is so important to honor these individuals for their service, and to encourage not only their presence at the walk, but for attendees to have the chance to interact with these fine women and learn from them.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read what you wrote about in the blog about Speedy Red. I think you are right and that all of you, including Mattie knew what was really happening when you gave him the toy without him "earning" it as you had specified. Believe me, there is no reason to have it weigh you down; you did the right thing, it brought him so much joy and gave him back some of his independence and mobility when nothing else would. I know you never really discussed his impending death even though you wanted to be totally honest and open with him. I think he knew and I don't believe it would have added anything to the relationship to have the conversation. You allowed him to have hope and joy for as long as he could; you did your best as a parent and a carer and that's all anyone can ever hope for. As I go through my day today, I will keep you in my thoughts and I hope your pain eases a bit."

April 11, 2010

Sunday, April 11, 2010

Sunday, April 11, 2010

Tonight's picture was taken in August of 2002, when Mattie was four months old. Mattie was the recipient of many wonderful gifts when he was born. At an early age, he had an incredible collection of stuffed animals. However, by four months, Mattie had his favorites picked out. The one that he absolutely loved was this cow rattle that, in this picture, was sitting on his tummy. He liked the sound it made and its contrasting colors.

Poem of the day: Things by Charlie Brown

 I touch your things and wonder
Why you're not still here
To laugh and play and enjoy
All the things that you held dear
I know I need to put them away
But I still can't face
How lonely I will be
Without your things in place
I hope I will soon see
A way to continue on
To keep you in my heart
As you are always in my mind
So until then, Mattie moon
Your toys and things will be
Scattered all around
Providing reminders of you to me

Charlie's poem, "Things," reminds me of a song I have heard on the radio. It is a song by Miranda Lambert entitled, "The House That Built Me." When I first heard this song, it got me to pause, because I found the sentiments in the song very touching. However, there was something about the song that was particularly meaningful to me. Below, I attached the link to the song's video for you to see and hear it for yourself. Miranda Lambert is singing about the importance of going back to the house she grew up in. Within this house, is captured the memories of events and people that made her who she is today. I have been wondering why this song resonates with me. Is it because I have the desire to go back to the house that built me?! It took me a while to put the connections altogether and when I read today's poem, everything just clicked. I am not relating the song to myself at all. I am relating it to Mattie. Peter and I are living in the house that built Mattie. Each item (or "THING") symbolizes and captures a memory. Just as Miranda Lambert walks into each room of the house and remembers something back from her childhood, I too walk throughout my house and remember Mattie as a baby, Mattie learning to walk, Mattie learning to ride a bicycle, and Mattie just being Mattie. The things around me are more than just things, they are the things that helped to build my incredible son. Which is most likely why I am having a hard time with the thought of parting with any of them.

Miranda Lambert: The House That Built Me
http://www.cmt.com/videos/miranda-lambert/500805/the-house-that-built-me.jhtml

Peter and I had a productive weekend of cleaning out our deck and planting. Things are beginning to take shape, and we had dinner outside tonight, while listening to Mattie's fountains in the background. For my birthday in 2008, Mattie and Peter built me two outdoor fountains. They both knew how much I like the sound of water, that when I went away to San Diego in July 2008 for a conference, they became very creative. Mind you a few days after my return from San Diego, Mattie was diagnosed with Osteosarcoma. The fountains in a way are very bittersweet for me. These fountains will always remind me of Mattie, the gift he gave me on my birthday, and unfortunately cancer. Peter retold the story tonight about how he and Mattie created a fountain for me back in 2007. However, this fountain did not turn out too well, and they tossed it. They came up with much better designs in 2008. What got me about the story was the fact that Mattie was focused upon giving me fountains, and the time and effort did not seem to dissuade him. Hearing this story always makes me smile, because I can picture Mattie dialoguing this with Peter, and Mattie was very compelling when he had his heart and mind set on doing something.

Peter and I then started talking about Speedy Red over dinner. What you should know was the original deal (before we knew Mattie's cancer metastasized), was that Mattie could get Speedy Red if he earned it. Earning it would mean that he had to listen to Anna (his physical therapist), comply with what she asked him to do, and to start taking a few steps on his own. Unfortunately this was not in Mattie's future. Tonight I wondered what Mattie could have been thinking when we gave him Speedy Red. Naturally he wasn't walking, and hadn't met his end of the bargain. I have no doubt that Mattie made note of this, but at the time none of us dialogued about why we were giving him this battery powered car. Maybe all three of us really understood the reason, and nothing verbally was needed to be said. I am not sure, but somehow this weighs heavily on my mind.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read your blog this morning and the poem somehow wrote itself. I hope you don't mind. Perhaps you can find a way to work some of Mattie's collections into your landscaping; certainly many of my neighbors use shells and rocks in their flower beds. Perhaps some of Mattie's friends would like a few of the pieces to work into their own flowers especially if they can be put in along with the "forget me nots." I know you said you were upset by other children using the sand box but Mattie had a generous spirit and would have welcomed other children into his games and perhaps they sensed that and so made themselves comfortable in the sand box. When a spirit is not welcoming, others, especially children, sense that so I believe he would not be upset by having them there. I like Susan's idea of the book, perhaps you could try out the idea with an article for one of the counseling newsletters or journals and then build from there. As I practice today I will focus on the energy to accept limitations both physical and mental. We all have them; but often we think they are in a different space/spot then they actually are. I will send you the energy to push through the discomfort of dealing with the least personal of Mattie's "things" as that may be the place to begin when you feel ready. I hold you gently in my thoughts today!"