Thursday, December 31, 2009

Thursday, December 31, 2009

Tonight's picture was taken on Christmas day in 2007. Mattie was staying in a hotel room with us in Florida. We went on a family Christmas trip with my parents in 2007, and once you read my mom's story below, the picture will make more sense. Needless to say, take notice of Mattie's Christmas tree here. It was actually made out of green feathers (it reminded me of something out of a Dr. Seuss book), and the ornaments, we hand made out of construction paper. This tree was so unique that I packed it in our luggage as a remembrance of Christmas 2007, and I still have it on display in Mattie's bedroom.

Poem of the day: New Year's Poem by Agnes Marshall


Angels in heaven whisper
a new year dawns today
for all our heartbroken loved ones on earth
where we couldn't stay
we'll celebrate here in heaven
sending many blessings down
to the ones who gave all to love us
without any regrets or frowns
blessings to all we left behind
to us angels you were the special kind


On behalf of Peter and I, we want to wish our readers a very happy and healthy 2010. We are grateful for your continued support and for tuning into the blog and our Foundation website. As I am sure you can imagine, today is a very bittersweet day for us. In fact, New Year's may be just as hard as Christmas. In addition to how I am emotionally doing, I am also physically wiped out. Peter met me for lunch today, and what I quickly could assess was I wasn't hungry, couldn't hold my head up, and felt like I had a fever. So instead of visiting Mary, Ann's mom, and attending her New Year's party at her assisted living facility, I decided to go back to bed. I have been in bed all afternoon, and still do not feel much better. Thankfully Dr. Bob came to the rescue again and I am back on antibiotics.

As my energy level is low, I am very grateful that my mom wrote the second part of "The Best Christmas Ever" so that I could share it with you tonight. I hope you enjoy this story as much as we did. I think it gives you some perspective into Mattie's character, energy, and sweetness.
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The Best Christmas Ever

Part II

By Virginia R. Sardi

Mattie loved Christmas and looked forward, like any child, to all the preparations made for the anticipated festivities of the holiday season. The simple activity of counting off the days until Christmas on his Advent Calendar generated an excitement all its own because he could visually see how close he was getting to Christmas Day by counting how many windows remained unopened on his calendar knowing that when they were all opened, it would signify that Christmas Day had arrived with all the promises it held of unexpected treats and surprises. Mattie was taught at SSSAS the religious significance of Christmas and knew that no Christmas was complete without a Nativity scene depicting the birth of Christ. He understood its importance and was happy to have both a Nativity scene and a beautiful Christmas tree in his house to celebrate the holiday. Mattie’s creativity knew no bounds for he with the help of his Dad created a colorful display of beautiful lights on trees and bushes in the private park like area outside his apartment that all of his neighbors came to admire every year. They looked forward to it as an event that marked the season of Christmas and it became a community tradition to be appreciated by all who lived there. Here was a little boy who really understood what it meant to have Christmas spirit and knew instinctively how to share it with others.

How could he not love Christmas when the world suddenly turned red, his favorite color, and was everywhere he turned? How could he not love Christmas when it fired up his imagination with so many exciting ideas? The possibilities seemed endless and kept Mattie’s fingers and mind whirling around in search of eye catching and mind stimulating ideas to incorporate into his holiday art work. Christmas symbolism seemed embedded in his DNA and made all the fun things of Christmas like jingle bells, snowflakes and sugar plum fairies so natural for him to love. You could be sure his mind was working overtime wondering what Santa was up to in the North Pole and whether he would have something special in his sleigh for Mattie at Christmas as he playfully greeted you with a jolly Santa like ho-ho-ho and awaited that special visit from Santa himself!

However, Christmas 2007 was to be a little different. He would be celebrating Christmas Day with his family in Boca Raton, Florida. He liked the idea but had a major concern about Santa Claus. How would Santa Claus be able to bring him his gifts if he was in Florida at a hotel? Mattie, being the precocious little boy that he was, worried that Santa Claus would not find him in Florida on Christmas Day. It was a very logical question under the circumstances and required serious consideration because Mattie did not want to miss out on a visit from Santa. His mom addressed the matter by explaining that she wrote to Santa Claus informing him where Mattie would be at Christmas and assured Mattie there would be no mix-up in Santa’s deliveries. After a few probing questions about how Santa processed his mail, he was satisfied that Santa would find him in Boca Raton and deliver his presents to the hotel. He then thought about another sticky problem that could trip up Santa. Mattie noticed that even though the lobby of the hotel had a large beautifully decorated Christmas tree, it was not a good place for Santa to leave his presents since it was located in a public place. He had a point! He concluded that the best place for Santa to leave his presents would be in his hotel room but that presented a problem too! There was no Christmas tree in his room for Santa to find and he was troubled that Santa might not leave presents without one. To resolve that issue, we all agreed that he needed a Christmas tree for his room so that Santa would know where to leave his presents. Mattie was taking no chances that Santa would have any excuses to forget him on Christmas Day! In listening to him articulate his concerns about Santa and his presents, I was impressed with the logic of his arguments and thought that he would have made an excellent lawyer given how logical he was in presenting his case. We had a couple of days to find a tree but since we were so close to Christmas we knew our chances of finding a good tree were not good. There was only one place to go to get a Christmas tree that was practical for our purposes that would also pass muster with Mattie. We headed right for Target and there we found and purchased the perfect Christmas tree for the occasion. It was approximately 12 to 18 inches tall and made with beautiful man-made emerald green feathers. It had its own base and Mattie thought it was pretty cool as he had never seen anything like it before. Neither had we! We decorated it with some colorful Christmas ornaments and added some tinsel and Mattie was delighted with the result. Mattie was now content that he had a tree in his room an observed that this room had a balcony, just like he had at home and figured that Santa would see the connection right away. Mattie understood that Santa would come only when he was sleeping. He was told that Santa could not be disturbed when he distributed his gifts to children because otherwise he might not get to everybody on his list. Mattie intended to fully comply because he was not taking any chances that he might upset Santa’s routine and miss out on getting his presents. As I noted before, he was a cautious little fellow who based his actions on the stories of Santa’s legendary love of children and his annual Christmas visit with his sled and reindeer to bring toys to children all over the world. In his mind, he found the perfect solution to get Santa to deliver his presents to him in Florida on Christmas Eve using a logic that could only be seen through the eyes of an impressionable and imaginative five year old who believed in the magic of Christmas.

Is it any wonder that Christmas morning was a joyful experience for Mattie and turned out to be everything he hoped for? It was an unforgettable experience for us to watch him bursting with happiness and laughing with delight as he opened all his presents. Just looking at his smiling face was our reward for participating behind the scenes as Santa’s helpers orchestrating the timely arrival of his presents from Washington, DC and Los Angeles, California to Florida so that they could be under the tree for Mattie to discover on Christmas morning. The tree may have been an artificial pretender but Mattie’s joy was very real and is a timeless remembrance for us of the beauty and purity of his childhood innocence that will remain a lasting memory of happier times. When I think of Mattie’s angelic face aglow with pure happiness on that beautiful Christmas morning in Florida, I can say with certainty that this was the Best Christmas Ever!

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I would like to end tonight's posting with two messages. The first message is from my mom. She wrote, "Have you ever heard the phrase, “Once in a blue moon?” It usually refers to an event that one does not expect to occur very often. It might be of interest for you to know that December 2009 is just such a month, a month of the Blue Moon. It means that the there are two full moons in one month, the second one is called the Blue Moon. This event happens approximately every two to three years. The first one has already appeared this month and the next one will take place on New Year's Eve, December 31st, I will be looking for the Blue Moon Thursday night, and I hope you will too for it is always exciting to gaze upon, “Mattie Moon” as he lights up our world twice in one month."

The second message is from my friend, Charlie. Charlie wrote, "Thank you for sharing about Mattie's early days; it explains a lot about his very close bond with you and Peter. How wonderful that you found a place like RCC and a teacher like Margaret who helped Mattie open and blossom into the boy he was meant to be. It is terribly frustrating when you cannot communicate; I've seen that reaction in deaf children who have not been taught to sign, in autistic children who haven't found a way to communicate and even in aphasic adults who've lost the ability to speak. We forget we are programmed to be social beings and when we cannot, things go very wrong for us. As always I admire your patience and determination to do the right things as difficult as they may be on behalf of those you love. As we go forward into this new year, I will take Mattie memories with me. I hold you gently in my thoughts."

Wednesday, December 30, 2009

Wednesday, December 30, 2009

Tonight's picture was taken in January of 2003. Mattie was 9 months old and full of energy. Mattie was a late walker, and never crawled. But the one thing he absolutely loved was this walker that made all sorts of car sounds. He loved the freedom these wheels gave him. I remember taking this picture of Mattie. I particularly loved his impish look that he would give me, and that beautiful smile. It is hard to understand or rationalize what happened to him, when I look at this healthy baby picture.

Poem of the day: Along Grief's Journey - Ferna Lary Mills

I hear little children laughing

and the sound brings my soul such pain.

Yet I know in my heart that life goes on

and I must learn to live again.

Some days I stay so busy

I don't even realize you're gone.

Then there are all of those other days when

I feel like I can't go on.

Sometimes I think I dreamed you . . .

that you never existed for real.

You've been gone so long and I'm just not strong

for my life has become surreal.

They tell me it's time to let go

and build a new life without you.

But the builder is weak and I can't even speak

and I don't know what else to do.

How long will this pain last, Lord?

How many tears have I already cried?

It seems like forever since my world fell apart

when my loved one died.

As Peter and I looked up at the sky tonight, we noticed "Mattie Moon" looking down on us. We were talking but stopped to pause in conversation after seeing the moon. Naturally we both immediately thought of Mattie. I value these symbols in nature, and certainly turn to them for comfort and reassurance, but some days, even these are not enough for me. I rather just have Mattie. I understand the sentiments expressed in this poem. For seven years I was a mom, but now as I attempt to live my life without Mattie, I struggle to understand my identity, and often wonder if I am now simply living another existence. I know I did not dream up the essence of Mattie, he really was part of my life, but as time moves forward, and with each day he is not in my life, I am left questioning what is my reality. Therefore approaching a New Year, in my world view is daunting and depressing. Depressing because 2010 will be a year that is completely Mattie free. A year that never experienced Mattie, a year where there will be no possible new memories of Mattie to be made.

I had the opportunity to have tea with Margaret at her home this afternoon. As many of my readers know, Margaret was Mattie's first preschool teacher. When we came to Resurrection Children's Center, Mattie and I were both in a fragile place. Mattie was a challenging baby and toddler, and challenging is most likely putting it mildly. Mattie had many sensory issues, and was also a late walker and talker. He experienced great frustrations because he couldn't communicate. Naturally, as with any of us, when we can't express ourselves, these feelings come out in different ways. With a toddler it was through biting, kicking, and hitting. Mattie wasn't selective and would do this with anyone. Mattie and I spent the first two years of his life pretty much isolated from other children. Not that I did not try to pair him up with other children, I did, but most parents did not understand Mattie and truly disliked his behaviors. Needless to say, parenting Mattie was a humbling, very humbling process. I spent a great deal of time worrying about Mattie, and trying to figure out how to help him. I am telling you this because I want you to understand that in many ways, Peter and I did not have the typical parenting experience right from the start. You may want to dismiss what I am telling you, because you are chalking it up to us being new parents. But I assure you, I had many professionals weigh in on our situation. The one consistent thing that was always true, was we believed in Mattie. I never gave up hope on him, and knew he had great potential. The ironic thing is because of Mattie's initial issues, it forced us to spend hours together alone. It was through this intense time together, that we developed a very tight and special bond, a bond that enabled us to function very well together through cancer. Unlike some other children I saw in treatment turn against their parents, Mattie never did. He trusted us, and I deeply believe he did because of the trials and tribulations we experienced in his toddler years. These issues were just the testing ground for what was to come later. Mattie was the love of my life, and I assure you, if I love you, I will fight to the end for you, and I know on some level Mattie understood this about me.

This brings me to Resurrection Children's Center. When Margaret met Mattie and I, she knew that I had many concerns about Mattie's social development. However, Margaret was the teacher that turned everything around for us. Mattie was nurtured in the classroom in a positive manner, and the year he had with Margaret was a year of amazing growth and development. Mattie developed friends and like a wilting flower given water, Mattie started to blossom. But Margaret wasn't only good for Mattie, she was good for me. This preschool solidified my true feelings about Mattie, and it supported me as a parent. This is something I shall never forget, and most likely one of the many reasons Margaret will always have a special place in my heart. For once, I saw an outsider who understood and appreciated Mattie. It opened up a whole new world for him, and it was wonderful to see him thriving.

Each time I interact with Margaret, I can't help but explore these feeling. Mattie had two of the most positive years of his life in preschool. Margaret gave me a beautiful gift today. She knows that I like collecting angels, and she gave me a little boy angel. The little boy reminds me of Mattie, and he is holding a frog. Something Mattie would have most likely wanted to scare me with. Any case, this little boy angel has joined my other angels on my kitchen windowsill, and each time I look at him, I will be thinking of Mattie.

Later tonight, I went to visit Mary, Ann's mom. After dinner Mary wanted some fresh fruit, but the kitchen staff at her assisted living facility refused to listen to her request. By that time Ann was also visiting, and the two of us were arguing with a chef who clearly has no idea what it is like to live in an institutional setting. His insensitivity to Mary's request was astonishing, and I told him I hope in his life time he never lands up in such an institution where he has to fight just to get a bowl of fruit. He clearly doesn't understand the lack of control these older adults live with each day, and the one thing they may perhaps have an ounce of control over, what they eat, he is denying them. Fascinating and disheartening!

Peter and I went out to dinner tonight with Ann and Bob, and some friends of theirs. It was a lovely dinner, but I am very well aware of the inner turmoil inside my head. I try not to let this affect others, but I do know my limitations. I know that there is no possible way I am celebrating New Year's eve at a party. To me there is nothing to celebrate, and this dull feeling is how I wake up and end each day. Going to a party or being around people who are happy, makes me further depressed. Another sad commentary about myself. I want others to be happy and for good things to happen to them in their lives, yet, I am conflicted because I don't feel this way, nor do foresee such happiness in my own life. These feelings further isolate me from others.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It is hard to believe it has been 16 weeks since Mattie died. In some ways it seems like yesterday and yet it seems much longer that he's been gone. I thank you for meeting me for lunch yesterday; it was good to see you in person but it is clear that while you certainly look put "together" on the outside; on the inside you are clearly hurting. It was very kind of you to continue to make the trip to be with Mary in spite of how of you were feeling. I know that all the older adults you interacted with appreciated having you around. It is too bad that none of them have family who can spend more time with them. As we approach New Years I hope that you and Peter are able to start the foundation on a road that is headed where you hope it will be."

Tuesday, December 29, 2009

Tuesday, December 29, 2009 -- Mattie died 16 weeks ago today!

Tonight's picture was taken in December of 2007. I love Mattie's eclectic Christmas look. With a Boston Red Sox hat and Duck boat tour whistle in his mouth! What a look, but a priceless one that I am happy I captured.

Poem of the day: "My Sunshine" - Gayla Hansen

With you I bury my hopes and

dreams for all the days we'll never see

But I also bury the love in my heart

and the sadness of knowing

that we must part.

And I pray to God to do for you

all the things I would like to do.

And to keep my baby safe from harm,

to laugh and frolic in springtime's arms.

For now, everytime I see the sun,

I watch you smile as you run.

Laughing, smiling, running, playing

.... missing you.

Momma loves you baby

A part of me can not believe that Mattie died 16 weeks ago today. In fact, as January approaches, Mattie will be gone from our lives for four months, and I can tell you I feel no better now than I did on September 8, the day Mattie died. As time drifts by us, the reality of Mattie's death only sets deeper within our minds, hearts, and spirit. Time does NOT heal all wounds, and I am only further convinced that this saying was created and promoted by others who clearly have never experienced a traumatic loss. I have a hard enough time functioning on any given day, and yet tonight, as I spoke with Peter over dinner, I find I am in awe of how he has to keep it together in order to function at work. As I said to him, in many ways he has NO CHOICE. None the less, while he has no choice, he has given me the opportunity to have a choice. To feel however I want or need to feel on any given day. This doesn't mean that Peter isn't grieving, it doesn't mean that he isn't feeling the same way I do on any given day, but it means that out of commitment to his company and his love for our relationship, he gets up each day and really does the impossible. The impossible is to go to work, earn a living, and be a valuable part of his team, while in all reality his heart is breaking. I don't mention Peter often on the blog, but despite the tragedy we are living through and the hardship it has placed on our marriage, I am very aware of his continued love, and if I have any doubts, I just look at what he attempts to accomplish on any given day.

I woke up this morning feeling just as bad as when I went to sleep. I have a bad cold, and just did not feel like moving out of bed. However, I had made lunch plans to see Charlie, so that got me up and moving. As many of you know Charlie e-mails me daily, but today we broke free from our electronic dialog and actually met face to face. We talked about a whole bunch of topics at lunch, and the one thing that seems crystal clear to me, as I say on a daily basis, is no amount of talking about Mattie's loss makes me feel any better. That is because for the first time in my life, I have come face to face with a problem that can't be fixed. Mattie can't come back to life, which at this point is the only thing that would make me feel better and take away the pain. It is a sobering reality to accept the fact that things are out of my control, that some pain isn't fixable, and that I have no idea what goals I want to achieve or will make me happy. All the things I thought I wanted to achieve before to Mattie's illness NO longer matter to me, almost as if I am a completely different person now.

Later this afternoon, I went to visit Mary, Ann's mom. Mary is fighting off a cold too, so the both of us are a sight. Mary's dinner table mates are getting used to me sitting with them, and I have enjoyed hearing their stories, and of course helping them as well. It saddens me though to see many of these older adults sitting together at tables and not saying a word to each other. Somehow my presence inspires them. Not because it is me, but because I am perceived as young, an outsider, and bringing in a fresh perspective. As I land up talking to one of Mary's table mates, I pull in the other two into the conversation. Mental stimulation is vital for these older adults, and sometimes just showing you care about them, inspires them to talk and to re-engage. So in essence spending these last four evenings with Mary has been very enlightening to me about the human spirit, and the huge impact a smile or human touch can do for older adults.

I would like to end tonight's posting with two messages. The first message if from Mattie's oncologist and our friend, Dr. Kristen Snyder. Kristen wrote, "Another Tuesday has arrived. They seem to come faster and faster. Part of me wonders if you feel the same. But I think of Mattie as if it were yesterday. Vividly remembering his spunk, his character, his charisma. I will take those thoughts of your Mattie into the New Year. Thinking of you, on Tuesday and always."

The second message is from my friend, Charlie. Charlie wrote, "How difficult it must be to get up and do what you need to do when you don't feel well at all. I hope that you get over the cold or whatever you seem to have caught as it will take even more of your needed energy away. I know that Ann appreciates that you are seeing Mary each day while she is gone; what a lovely gift you are giving her in return for all that she has done for you over this year and a half. I know that Mary appreciates it as well; I am sure she is lonely without her husband and now with her daughter and her family away for a break. I just want you to know I think about you daily and I continue to pray for you and Peter."

Monday, December 28, 2009

Monday, December 28, 2009

Tonight's picture was taken last Christmas. Mattie was in a terrible, yet understandable, mood all day. In those low times, I actually would turn to the Team Mattie pile of gifts that I had, thanks to our many wonderful supporters. I would pull from this pile on such desperate occasions in hopes of redirecting Mattie's attention and mood. The particular gift he opened was from his preschool friend, John. John gave Mattie some fun Christmas hats and light up noses to play with. Peter and Mattie both put on a hat and a nose, and for just those short couple of minutes, Mattie's mood changed. He was funny and spirited, and made the cutiest Rudolph the Red Nosed Reindeer.
Poem of the day: A BRIDGE CALLED LOVE

It takes us back to brighter years,
to happier sunlit days
and to precious moments
that will be with us always.
And these fond recollections
are treasured in the heart
to bring us always close to those
from whom we had to part.
There is a bridge of memories
from earth to Heaven above...
It keeps our dear ones near us
It's the bridge that we call love.

Today was the kind of day where I had to wonder, why get out of bed? In fact, I most likely would have spent the day in bed if I had not promised Mary, Ann's mom, that I would visit her later in the day. I did get up this morning, but somehow after getting dressed, I felt so tired and fatigued, that I went right back into bed and watched another holiday favorite of mine, the movie Holiday Inn. As I went back into bed, our calico cat, Patches, was thoroughly confused. She works hard in the morning to get me out of bed, and there I was right back into it. However, despite being fickle (after all she is a cat) she jumped on the bed and literally came to sit on my lap. This may not sound unusual for my readers, but if you knew Patches and her personality, you would know this action is a rarity! Patches usually sticks close to me in times of crises. In fact, I distinctly remember one January, many years ago - Pre-Mattie, I was sick in bed with an 104 fever. I was practically delirious from my temperature. Patches could sense something was wrong, and stayed with me the entire time until Peter got home from work. Which is why several years ago I nick named her "nurse Patches." Her sheer presence made a difference in my recovery, because I was not alone. Similarly today, Patches sensed I needed company, and that things weren't right. What a perceptive animal friend!
As I was driving to see Mary, Ann's mom, for no apparent reason I began crying. Something about driving made me reflect on Mattie's death, the pain he was in, and the fact that I never had a two way conversation with him to say good-bye. I was driving on the highway, and with tears filling my eyes, I realized I had to pull myself together, because soon I wouldn't be able to see the road through all the tears.

When I arrived at Mary's assisted living facility, I found that Mary had company. Mattie's first preschool teacher and my friend, Margaret, was visiting. In addition, Peggy, who is a family friend of Ann's, was also visiting. So at one point, there were four women in the room chatting in a circle with each other. This type of stimulation and camaraderie are very good for Mary. I enjoyed seeing Margaret and connecting with her. She immediately understood how difficult Christmas was for me, and we reflected on the days ahead. Margaret's visit broke up the afternoon for us, and I look forward to seeing her again in a few days.

Tonight I feel as if I am developing a cold and am absolutely worn out physically and emotionally. I thank you for your continued thoughts that you send Peter and I. We need them more now than ever before. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I've read about people in grief talking about life "before" versus "life after." It seems to me that you have actually done this twice; gone from life with Mattie well, to life with cancer and now life without Mattie physically here. These are huge, horrible adjustments to have to make in the way that you live, and honestly I admire your courage in continuing to get up and go on each day. I am not sure any of us truly understands just how much energy and determination that takes. I agree with you that we have much less control over our destiny than we choose to think; what we do have is a choice on how we will behave and I can only say that I admire your determination to reach out and make things better for others in the midst of your own pain. For today I wish you the energy to keep going and doing what you believe needs to be done. I hold you gently in my thoughts."

Sunday, December 27, 2009

Sunday, December 27, 2009


This picture was taken last December in the PICU of Georgetown University Hospital. Mattie loved his magnetic Santa that clipped onto his wheelchair (Thanks Alison!) and the Christmas stockings, which Mattie thought he would use to keep his feet warm. Got to love him!



Poem of the day: You Meant So Much


You meant so much to all of us
You were special and that's no lie
You brightened up the darkest day
And the cloudiest sky
Your smile alone warmed hearts
Your laugh was like music to hear
I would give absolutely anything
To have you well and standing near
Not a second passes
When you're not on our minds
Your love we will never forget
The hurt will ease in time
Many tears I have seen and cried
They have all poured out like rain
I know that you are happy now
And no longer in any pain.

When I reflect on the picture above, it somehow makes me feel as if I have lived two lives. A life as a wife and mother of Mattie, and now my current life, which feels like some sort of purgatory or holding place, until my future is decided. After battling Mattie's cancer and then losing him, I have come to the humbling realization that I no longer have control over my life. Maybe day to day decisions I have control over, but the bigger picture and the future are completely out of my hands. I once believed I had the will and determination to decide my destiny, but cancer has sobered me up to the true reality. I certainly would like to be more optimistic, but I have seen the worst life has to offer and therefore it is impossible for this not to deeply affect my lens of the world.

Peter and I spent the day doing chores, and then in the afternoon, I went to visit Mary, Ann's mom. Mary was telling me today about the various jobs she has had in the course of her lifetime and which ones were her favorites. I always loved talking to older adults, because through their stories I sit back and try to imagine what they looked like and were like when they were much younger. The beauty about talking to an older adult, is hearing about history, the way things used to be, and the sheer appreciation for verbal communication. I stayed with Mary through dinner, and because I have been going to this assisted living facility for some time now, I am getting to know many of the residents. In a way, they have become part of my community. Just saying hello to some of these older adults or holding their hands makes a tremendous difference in their day. Mary always tells me I am doing God's work. Perhaps! But after being isolated in a PICU for 13 months, I have a much greater appreciation for the need for social support. So now if I can reach out to others when they are lonely, I am happy to do it. Not everyone is as fortunate as Peter and I to have a Team Mattie. Without such a Team, we would have been COMPLETELY lost. Something I never ever forget.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I know these days between Christmas and New Years are very difficult for you. Even if you were not grieving there is always that letdown after Christmas that seems to effect people and how much more so when you are grieving. I understand that it is incredibly difficult to face a year without Mattie in it; I know all of us which we could have altered the trajectory of his life so that he was still here. Perhaps in this coming year you can find a way to honor his memory each day without having it completely overwhelm you. I know that your dreams are shattered and I hope you can find something meaningful that you wish to pursue as the year goes forward. As always, be patient and kind with yourself; give yourself time and space to grieve. I hold you gently in my thoughts."

The second message is from my friend, Tanja, writing all the way from Germany. Tanja wrote, "How are you doing? I can't even imagine how hard the holidays must have been for you and Peter! I find it amazing that you have the energy to get out of bed in the morning and to do so many productive things despite constantly feeling the horrific pain and emptiness of not having Mattie in your life anymore. It is so wonderful of you to support Mary in such a kind and loving way!Today, we had lunch at a restaurant. Tyler was taking some silly pictures of Katharina with his cell phone. Of course, Katharina wanted to see the pictures. As Tyler was trying to locate the picture, he came across a picture of Mattie and you on our swing in our backyard this summer. I'm not sure if you have seen this one but it shows Mattie snuggled up in your lap, with that incredible, loving and trusting smile of his! The picture made the rounds to each of us at the table and each of us paused and reflected on Mattie for a while. I know it is not much comfort to you but Mattie is starting to affect the world - he is even remembered and cherished in Germany. Some of his pictures are also in Katharina's photo albums, which my mom puts together for us. I know that when they are shown to other people, his story will be told! Thank you for sharing Mattie's and your life with us. We all can learn so much from him, you, and Peter!"

Saturday, December 26, 2009

Saturday, December 26, 2009

Tonight's picture was taken in December 2008. The paper wreath featured around Mattie's neck was created by his art teacher, Debbie Pollak, and several of Mattie's kindergarten buddies. This wreath meant a lot to Mattie, since several of his friends signed it. I still have the wreath hanging on the inside of our door. I remember taking this picture of Mattie, and it is hard to believe it was taken a year ago. When I look at Mattie's picture it brings me great sadness, because I miss seeing him and his beautiful smile.

Poem of day: Giving Thanks By Scott Tallman

My memories are flowing,
Of Holidays past,
If only I’d known,
That they’d be his last
Right now I see nothing,
I can be thankful for,
My Son is gone,
My heart on the floor
Must I celebrate?
And pretend to have joy?
I just cannot do it,
Without my baby boy
His face now appears,
In the front of my mind,
That smile, that strength,
Of an Angel so kind
He tells me “It’s okay,
No need to be sad,
I’ll be there with you,
I still love you Dad”
He tells me to remember,
The Holidays past,
Of all we had shared,
And of memories cast
He says, “Dad, go forward,
And please spread the word,
Of the joy that we shared,
Of the Angels we heard”
“Of the family and friends,
Who stood by our side,
Who were with us always,
And the day that I died”
“Dad, give them my best,
And make sure they know,
I am now at rest,
Yet continue to glow”
“Because they have kept me,
So close in their hearts,
My memory lives on,
We’re not far apart”
And so once again,
I pick up the pieces,
I wipe away tears,
And my sadness decreases.
I’ll celebrate knowing,
Though he is at rest,
My Son is still glowing,
I am truly so blessed!

It just dawned on me today, that a New Year is approaching. I have mixed feelings about this. At first, I was thinking that perhaps saying good-bye to 2009 would be a blessing. But on the contrary, as 2010 approaches I realize this will be a completely New Year that does not have Mattie in it. As time goes by, I find that this is not necessarily a good thing. Time forces me to reflect on Mattie's death, on his battle with cancer, his torturous death, and of course Peter and I are left to deal with grief and the aftermath of trauma on a daily basis.

Going to sleep and waking up in the morning continue to be problems for me. I am not sure if I will ever get the PICU experience out of my mind and spirit. For over a year, I trained myself to forgo sleep, to not have my needs met, to not have adult conversation, and the list could go on. Trying to live a life now without constant stress and caring for someone are things I struggle with, because my body got used to needing this constant heightened level of anxiety to function.

For the next few days, Ann is away on a family trip. I am happy Ann can have this special time with her family, because I know building these memories are vital. However, when Ann goes away, a part of me feels a bit lost. Or more lost than usual. Fortunately we live in the technology era, which enables us to communicate back and forth periodically. I had a rough start to my day, and on such mornings it is hard to convince myself to get out of bed and greet a new day. From afar, Ann text messaged me and we chatted about the aftermath of the holidays for me.

This afternoon, I went to visit Mary, Ann's mom, at her assisted living facility. Mary and I looked at Christmas photos, we talked about various subjects, and I helped her with dinner. She always feels guilty when I am visiting her in the evening because she feels I should be out doing something she deems as "fun." However, I know how much Mary relies on Ann. When Ann is not around, this does affect Mary on some level. Therefore, if I can make things a little more pleasant for Mary, I will.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I can only begin to imagine how difficult Christmas Day must have been for all of you. To see the joy of other children, to know that Mattie is not here to celebrate with you has to be awful beyond words. I know, as do all the blog readers, your friends, family and those who cared for Mattie in the hospital that his bond with you was amazing; just as Abigail knows Ann is the best mother she could have, you were absolutely the best mom Mattie could have had. All I can say is that I am so sorry that you have no more holidays with him, no more average days of dropping him at school and hearing about what he learned that day. As we move toward the new year, I know that what is in your heart is that it is impossible to think of a year without Mattie in it. All I can say is that he is forever engraved on the hearts and minds of those of us who are in any way connected to you, Peter, or your families. As we move toward that new year, I hope you eventually find a measure of joy in knowing you could not have been better parents and you remain role models for us all."

Friday, December 25, 2009

Friday, December 25, 2009

Tonight's picture was taken last Christmas Eve. Mattie was surprised to get a visit from Santa (played by Ann's cousin Ed). It is hard to believe a year ago today Mattie was alive and with us, and I had no idea what the future had in store for Peter and I. I knew Mattie had a life threatening illness, but perhaps I was in denial because I just never knew we wouldn't have more years together.



Poem of the day: Someone is missing at Christmas

Let this be a loving reminder
That someone is missing today.
Someone our hearts hold on to
As we travel along life’s way.
Someone who made life so special
For each of us here.
Someone who won’t be forgotten,
But cherished from year to year.
And now as we celebrate Christmas,
Let us fondly recall
How deeply each of us loved him.
And oh… how he loved us all.

Yes indeed, SOMEONE IS DEFINITELY MISSING THIS CHRISTMAS! Today was a very difficult day for us. Certainly I survived the day, and most likely to those interacting with me, it may seem like I was fine. But internally, I was anything but fine. I began my day with the debate of whether to get out of bed or not. I did get up and what helped was I received a beautiful e-mail from Jenny, one of Mattie's art therapists. This e-mail meant so much to me, that it helped motivate me. I then sat at the computer today and wrote about 15 e-mails to nurses and other support staff at the Georgetown University Hospital who were instrumental in Mattie's care. I will never forget the skills, compassion, and kindness these individuals showed to Mattie. In many respects I miss our Georgetown family, but the irony is, Mattie had to get cancer for us to meet these incredible individuals.


I had the opportunity to chat with my parents today. As our readers can imagine, my parents have been greatly affected by Mattie's death, and because of this, it is some times hard for all of us to talk about Mattie and our reactions to his death. It is just that painful, since we are so deeply affected. My parents, like Peter and I, just couldn't send out Christmas cards or gifts this year. It just did not seem right to celebrate this holiday without Mattie. My dad got on the phone today and I could tell he was upset and wasn't sure what to say to me. But my mom translated the message, which was, Mattie is looking down on me, and he would be upset to know how unhappy I was. I have been reflecting on my dad's comment all day, and I know he is correct, but I can't move passed my feelings.


Later today Peter and I went over to Ann's house. We had a lovely dinner and Ann's children told us about their day and some of the wonderful gifts they received. Mary, Ann's mom, and Helen and Ed (Ann's cousins) were at dinner as well. It was very nice to be included in their family dinner. After dinner, Ann and her family surprised Peter and I with gifts. Ann gave me several things but two noteworthy ones for the blog were a beautiful jewelry box with Mattie's picture incorporated into it and a plate that says Friends are Forever and Ever. These two gifts are extremely touching to me and I have learned that gifts from the heart mean the most to me. These were the only gifts Peter and I opened today, and at one time perhaps this would have made me sad. But now I realize on such a deep level that the gifts I need can not come from under a tree. Certainly, like any of us, I appreciate and cherish whatever gifts I do receive, but Mattie's cancer opened my eyes to the greatest gift of all. The greatest gift you can give someone is that of your time and love. Time to listen to them, appreciate them, and help them when help is needed. It is a rather unfortunate way I had to learn this life lesson!

I had the opportunity to play a Christmas game with Abigail, Ann, Helen, and Ed tonight. It was an interesting and reflective game in which a question is posed to your team. The team has two people on it, one person who thinks of an answer to the question, and the other team mate has to guess the answer you are thinking of. For example, one of the questions was ...... have you ever experienced a Christmas miracle? Ann was my team mate. So I had to guess how she would respond to such a question. Needless to say, it appears that Ann and I know each other pretty well, because we were able to guess each other's responses. This should not be of any surprise to me since we spend so much time together. But I do think you can spend a lot of time with people and still not be able to guess what they are thinking, which seems to only verify for me the deep connection Ann and I have with each other. Peter and I joined in other games tonight as well, but the one that drove me absolutely crazy was Uno. Not a hard game to play, but clearly I was losing this game badly. It became the joke around the table. The object of the game is to be left with the least amount of cards, and I just kept accumulating cards. This certainly produced its share of laughs for all of us. I have become such a pro at losing games, after playing with Mattie in the hospital, that I am not sure it is even possible for me to win any sort of game. I am a child's dream to play with!

It was lovely to be included in a family today, it was special not to spend the day alone, but I must admit there are times when Mattie's loss became simply overwhelming tonight. Again, I internalize many of my feelings, so it may be hard for someone to know I am visibly upset. What gets to my heart is how Ann's children interact with her at times. Tonight, Abigail, jumped into her mother's arms, and told her she was the best mom ever, and that she would never want another mom. Abigail, whether she knew it or not, gave her mother the best possible Christmas gift ever...... To know and feel your child's love. There are many things that Abigail does that reminds me of Mattie, and it is in those moments, where I can feel the loss, the emptiness, and the despair that I feel over Mattie's death. I want Ann to feel this love from Abigail, but there are times were I find myself wondering why life decided to take away that pleasure from me? There is no answer you can give me that I would find acceptable, I assure you!

As we were taking Mary back to her assisted living facility tonight, she said good-bye to me. I know that Christmas is bittersweet for Mary too, and she said that she wished me a Merry Christmas and hoped that I have peace in the new year. She said I have dealt with more than enough, and it is in Mary's lucid moments, that I find she gets my non-verbals very well. As she was holding my hand, I landed up with tears coming down my face. Which Mary is used to from me.

I did survive Christmas, and perhaps that is an achievement, but I feel nothing over this accomplishment. Mainly because each and every day is a challenge. I want to thank so many of you who wrote to me today. Thank you for keeping us in your thoughts and prayers, and also thank you for the Christmas contributions you made to the Mattie Miracle Cancer Foundation.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "Thank you for the reminder about the pooping animals. I remember reading and laughing about that from your blog. I understand that laughing in the midst of grieving makes you feel guilty for expressing joy but it reflects the feelings Mattie raised in you and respects your relationship with him. Relationships with those we love contain all the emotions, negative and positive so why should we try to make our memories and reactions to them only about either the positive or the negative half? We should try to respect the whole of who our loved one was and our relationship with them by remembering and reacting to all of it without guilt or fear. Thank you for your description of the garbage bag incident; although I have often heard you laugh in class or in a social setting, you tend to have a level of "dignity" for me that makes it hard to see you in a situation like this and I now have another idea of who you are inside. I know today is especially difficult for you and I hope that you know many of us are praying for you and wishing you a space of peace and calm today."

The second message is from my friend, Tanja. Tanja is in Germany, so it was very special to get a message today from across the Atlantic. Tanja wrote, "I just wanted to say a quick hello. I know these holidays are especially difficult for you and Peter. I´m glad you are spending most of your time with Ann and her family. Even though we are here in Germany we continue to think of you. Mattie also continues to be in our minds every day. As we were walking through some of the stores and Christmas markets, Katharina was drawn to all the toys and legos Mattie would have enjoyed. She often just looked at me and we both said "Mattie" at the same time. Last night we participated in a small service on our local cemetery. It had been a cloudy, cold and rainy day. Fortunately, by 5pm it stopped raining but it was still cloudy. As the service continued and it got dark, I felt a strong urge to look into the sky and there all of a sudden, the clouds had broken up for just a few seconds and the moon was shining through. I immediately thought of Mattie Moon."

The third message is from one of my former students, who was also a babysitter of Mattie's. Kerry wrote, "I am so sorry for the loss of your sweet Mattie. I feel so lucky that I had you as a professor and got to hear Mattie stories in child development. Even more so I love that I was able to know him personally over the year that I helped you with babysitting. One of the things that I remember best about Mattie was how much he loved you Vicki. Every time we went on a walk he would want to stop and pick up little treasures for you whether it be an acorn he saw or a pretty leaf. Every time you came home he was so overjoyed - even though this word doesn't really do it justice - to see you. I would often think to myself that I hope to one day have a child that would love me so much. I've had a really hard time sitting down to write this email somehow it feels that I am leaving Mattie behind. It feels like yesterday when I sat down to the blog and found out that Mattie had left this Earth. I realized though I am one of the lucky ones that gets to carry his smile with me wherever I go and every time I see a perfectly formed acorn I'll think of Mattie. I feel blessed that I got to be part of the community that loved Mattie, his funeral and remembrance ceremony were absolutely gorgeous. I wish I had been able to stay for a longer amount of time, I had to get back here to CT. I work on our oncology floor at our hospital in town - we also specialize in palliative care for end stage disease of any kind. It has been hard for me to face that Mattie was like one of our patients or that you were one of the grieving families left as survivors. I see on a daily basis what you have gone through and I wish with all of my heart that Mattie had been given more healthy days with you. You are two amazing strong people and Mattie was blessed to have had you. You are awesome parents and advocates. Recently I've been thinking a lot about a movie, What Dreams May Come, one of the thoughts is that a whole human life is just a few moments in Heaven. So even though we might be missing the people who have left us before their time they will have just a few hours without us. I like to think that Mattie is up in Heaven on a long walk collecting treasures and before he knows it you will all be together once again."

Thursday, December 24, 2009

Thursday, December 24, 2009

Tonight's picture features Mattie in front of our tree in December 2007. Though we celebrated Christmas in Florida that year, we still decorated, and Mattie set up his Christmas train around the tree. The train was an important holiday decorating tradition for Mattie.

Poem of day: Don't Tell Me by Judi Walker

Please don't tell me you know how I feel,

Unless you have lost your child too,

Please don't tell me my broken heart will heal,

Because that is just not true,

Please don't tell me my son is in a better place,

Though it is true, I want him here with me,

Don't tell me someday I'll hear his voice, see his face,

Beyond today I cannot see,

Don't tell me it is time to move on,

Because I cannot,

Don't tell me to face the fact he is gone,

Because denial is something I can't stop,

Don't tell me to be thankful for the time I had,

Because I wanted more,

Don't tell me when I am my old self you will be glad,

I'll never be as I was before,

What you can tell me is you will be here for me,

That you will listen when I talk of my child,

You can share with me my precious memories,

You can even cry with me for a while,

And please don't hesitate to say his name,

Because it is something I long to hear everyday,

Friend please realize that I can never be the same,

But if you stand by me,

you may like the new person I become someday.

I spent the entire day at Ann's house. She had a Christmas Eve brunch this morning, in which she invited many neighbors and friends. Mary, Ann's mom, was also at the brunch, and Ann's cousins, Helen and Ed, from Massachusetts were also visiting. In fact, I met Ann's cousins a year ago today. They came to visit Mattie at our home, and Ed was dressed as Santa Claus. Mattie was surprised, and very willing to accept a gift from Santa. I will never forget how Ed and Helen tried to make Christmas Eve special for Mattie last year. In addition, after Santa gave Mattie a present, Dr. Bob gave Mattie a present of his own. Bob removed Mattie's leg cast that he wore post surgery for over a month. So there was a great effort last year to try to make Christmas memorable for Mattie.

Unfortunately for the three of us last year, Christmas was a very challenging holiday. Mattie was recovering from surgery, was still in pain, dealing with PTSD symptoms, and naturally with all of these things was very moody and depressed. It was a Christmas that I look back on now with great pain. I can safely say that Mattie had NO joy last Christmas, and it was painful for Peter and I to watch the ravages of cancer on Mattie's body, mind, and spirit.

I think I was able to get through Ann's party today because I stayed with Mary and focused on helping her eat and chatting with her. I think if my mind really did stray to the tone of the day and the holiday, it may have been too overwhelming for me.

Ann's cousin Ed, dressed up as Santa for the kids at the brunch. Ed has been entertaining kids at Ann's house for 11 years now, and he does make a jolly and happy Santa, who seems to catch the interest of kids of all ages. Bob snapped a picture of me sitting on Santa's lap today. Naturally, I couldn't help but feel that Mattie should have been at this party today. I know he would have laughed to see me sitting on Santa's lap!

Later today, Alison (our Team Mattie Fund and Communications Director) came by Ann's house and brought Christmas gifts for us. I unwrapped my gift, and Alison got me a gift that Mattie would have approved of. It is a plastic sheep candy dispenser, wearing a Santa hat. The catch is this is a "pooping" sheep, who delivers brown jelly beans. Mattie had a collection of "pooping" plastic animals, and he got a kick out of them. In fact, Alison, Mattie, and I played for about two hours one day, acting out all sorts of play scenarios with these "pooping" animals he had. So it was very fitting to receive the pooping sheep today, Mattie would have been thrilled to add it to his collection.

I went to Christmas Eve mass today with Ann and her family. As many of my readers know, I do struggle with my feelings about God. I just have so much anger about Mattie's illness and death. At church I sat between Mary and Ann. Somehow this was the support I needed to make it through the mass. Peter and I had dinner at Ann's house, and after dinner, we played a Christmas Trivia game in teams. Some of the questions were down right hysterical. For example, how many pounds of turkey does the average American consume between Thanksgiving and Christmas? These questions, and how we were brainstorming answers, made me laugh. I haven't laughed like this in a long time. Of course, laughing is good medicine, but then I always have a tinge of guilt after this, because I feel that maybe I shouldn't be laughing or having a good time so soon after Mattie's death. Naturally this may not make sense, and I know I deserve to laugh and Mattie would want this, but I still can't help how I feel.

Between the trivia game, and trying to help Ann clean up tonight, I landed up laughing quite a bit. Something as simple as changing a garbage bag, became a comedy show. Helen and I were holding the trash bin, and Ann was tugging at a very full garbage bag to try to remove it from the bin. It was so difficult, I was on the floor holding the bin from the bottom and Helen was holding it from the top, and Ann was tugging away. We kept telling her to pull or push, and at one point Ann and I realized it sounded like we were talking about childbirth rather than removing a garbage bag. My description may not sound funny, but all three of us were laughing hysterically.

I would like to share an article that Charlie shared with me today. I related to the sentiments expressed by the mother in this article, especially when she says that after her son died, she in many cases had to learn to allow other people to give her the reason or meaning to get out of bed in the morning.

______________________________________

Still nurturing the inspiration In the 'heartsongs' that Mattie Stepanek left behind, his mother finds a reason to live By Kim Lawton Saturday, December 5, 2009

It's standing room only at the Borders bookstore in Bethesda, where Jeni Stepanek is talking about her new book, "Messenger." The book is about her son Mattie, the inspirational poet who died five years ago at 13 after battling a rare form of muscular dystrophy.
Because of the same disease, Jeni Stepanek now uses a wheelchair.

In his short life, Mattie wrote six books of poetry and a collection of essays that he collaborated on with Jimmy Carter. The Rockville youth made it to the New York Times bestseller list. He became a friend to the rich and famous. He touched millions of people around the world with his message of hope and peace.

"Since he died, I've hit some very, very low points," his mother told the PBS show "Religion & Ethics NewsWeekly," taking frequent draws on an attached breathing tube. "I have had mornings where I'm not quite sure what the sane reason is to bother getting out of bed." But she added, "I always find one, and if I can't find one, what I've learned is to allow other people to give me a sane reason to get out of bed."

One of Stepanek's biggest reasons for making it through the day is her effort to keep her son's legacy alive. Before he died, Mattie said: "God has given me a very special opportunity that I should not let go to waste. I use the gift he has given me." From the time he was a little boy, Mattie told his mother that God was putting messages in his heart. He gave voice to the messages through his poems, which he called his "heartsongs."

His mother said there were several basic themes. "Hope is real. Peace is possible. And life is worthy," she said. "The best I can understand it is that it really is the universal truth. It's what Jesus Christ taught us. It's what Gandhi teaches us. It's what Martin Luther King teaches us. . . . In giving, we shall receive; in doing good, good happens."

Since Mattie died, Stepanek has received thousands of letters and e-mails from people who say he continues to inspire them. There is even a grass-roots movement that is trying to open an official investigation into whether Mattie should be recognized as a Catholic saint.

People "have contacted me to say they believe Mattie has interceded in their lives," she said. "They believe that Mattie has healed their child or touched their spirit or turned them back to God or prevented them from committing suicide." As the person who knew her son better than anyone, she finds it humbling -- and a bit overwhelming.

"I feel the responsibility to share with people the truth of my son's life," Stepanek said. "What I don't want people doing is . . . putting him up on a pedestal -- that he's a little guru; he was perfect; he never got angry; he never got sad; he only spoke bits of wisdom. That's not who Mattie was."

Stepanek chairs a foundation named for Mattie that tries to make his message as accessible as possible, including school curriculum projects based on his writings.
As her health deteriorates, Stepanek, 50, has also become an inspiration to many. Mattie was her fourth child to die of the disease she didn't know she was carrying. Her condition was diagnosed when Mattie was nearly 2, after her two eldest children had died and her third child was dying of the disease.

"When Mattie died, that's when the grief became so overwhelming, because where do you put your mommy role?" She said her faith has helped her cope and has grown dramatically, although she has questioned God at times.

"I'm very good at, through prayer, giving God a to-do list: 'Dear God, this is where I need you, and this is how you can meet my needs.' . . . I think I began to realize toward the end of Mattie's life, prayer is not just giving God your wishes. It's asking to bring God into whatever the moments are in my day," she said.

Although people tell her that they have felt Mattie's spirit after his death, she never has.
"What I would give to have my son come and stand and just say 'hi' or 'yo,' just say anything, just touch me," she said. "But I know that would be wrong. And I think my son is wiser than that. Because if my son came and spoke to me or touched me . . . I'm afraid I'd never emotionally or physically be able to move from that spot."

She said Mattie has given her the hope and faith to move forward. "He said, 'When I'm gone, promise me you will choose to inhale, not breathe merely to exist.' And that means finding some worthy reason to move into each next moment," Stepanek said. "And that's the most difficult choice I face every single day." But, she said, "it's the most worthy choice."
_______________________________________

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I believe when there has been no crisis in your life, you tend to overreact to the small things. So it may be with some of these moms whose lives so far are pretty untouched by the tragedies that life can and does bring. Some people go a long time before that happens while others suffer early in their lives.You can see and hear the difference when you talk to them; I can often tell which student counselors have suffered personal losses in an initial conversation that never even touches that subject. A lot of people still believe that avoiding the subject of our deceased loved ones will keep us from grieving but that's wrong; we think about them a lot and all that the avoidance does, is convince the griever that you don't care or that you don't want to connect at the real level. I am sorry that yesterday was such a difficult day and that you are still suffering from those headaches. I think it is wonderful that both Peter and Ann take the time to get to the real feelings that you have and help you express them; this is a painful but necessary thing to do so that your heart can eventually "heal" although it will always have a big scar upon it and it will never look as it did before Mattie died. I wish you an oasis of peace in the midst of the grief today; may you have a space in which to catch your breath. I hold you gently in my thoughts."

Charlie sent me the link to the Rascal Flatts' song entitled, Here Comes Goodbye. I have heard this song numerous times, but never saw the video until today. I always thought the song was about a woman who was breaking up with her boyfriend. I was VERY wrong. It is about a woman who lost her father and her son. I have attached the link if you want to see if for yourself.

http://www.youtube.com/watch?v=1Uq3nI11w4g

Wednesday, December 23, 2009

Wednesday, December 23, 2009

Tonight's picture was taken in December 2003. Mattie was 1 1/2 years old. Peter and I took Mattie to Lowe's, and as you can see in the picture, Mattie was fascinated by the Christmas lights and the holiday displays at the store. It turns out that one of the pictures we took of Mattie that afternoon at Lowe's, became the cover of our Christmas card. Peter and I always laughed about that Christmas card. Because, Mattie had to be secured into a shopping cart and have all the displays at Lowe's around to capture his attention long enough to slow him down to snap a picture.

Poem of the day: They Say There is a Reason

They say there is a reason,
They say that time will heal,
But neither time nor reason,
Will change the way I feel,
For no-one knows the heartache,
That lies behind our smiles,
No-one knows how many times,
We have broken down and cried,
We want to tell you something,
So there won't be any doubt,
You're so wonderful to think of,
But so hard to be without.



This poem says it all.... there is NO REASON for Mattie's death that is acceptable to me and TIME WON'T heal my wounds. Most definitely I agree with this poem, there are many, many tears behind my smiles. I couldn't have said it better myself.

I had the opportunity to attend a cookie exchange party at Ann's house today. I had never been to a cookie exchange, but for those of you who are as clueless as I am, I will explain what happened. Seven women participated, and each baked 7 dozen cookies, or basically a dozen cookies to be given to each person attending the party. So by the time the party is over, each person leaves the party with seven different types of cookies. Mary, Ann's mom, also came to the party, and I had the opportunity to spend a good part of the day with her.

I entered this party on heightened alert. I just felt uneasy about this, maybe because I haven't slept well in two days, I have a massive headache, or to put it plain and simple, I am cautious now around surrounding myself by other moms. For those moms who intimately went through Mattie's battle with me, I am far more comfortable interacting with them. But socializing with other moms now is very difficult for me. I no longer feel part of the mom world, and therefore, I purposefully remain on the periphery to protect myself. Completely unintentional, however, some of today's conversations made me not only upset but at times angry. I was angered because what I view as something to get stressed out about or to complain about is so far off the normal day to day continuum for most people. I am not down playing the stresses others are experiencing by any stretch of the imagination, because we each have our own tolerance level for issues in our lives. However, this discrepancy between myself and other moms did signal to me once again, that I am VERY different. That wasn't a good feeling for me. The irony is Mary turned to me and said exactly what I could not... which was I was "sad" to be surrounded by other moms and not have Mattie with me. It was at that point, that I had to separate myself from the entire group and went to another floor in Ann's house. I had many moments today in which I was in tears. When I migrated to another floor, Ann must have noticed my disappearance and came looking for me.

Ann sat with me, as I cried and just felt depressed. It is a low of lows, when I feel I can't pull out of this and nothing is going to make my situation better. It certainly wasn't my intention to worry Ann or to have her look for me. I removed myself specifically because I want others and especially Ann to be able to enjoy their time together without me crying and changing the mood or focus of the party. I mentioned this to Ann and her reaction was I was "worthy" of being concerned about and that I should let her chose what and how she wants to spend her time.

Ann was trying to get me to eat today, but because I have such an intense headache, it is affecting my view of food. I was able to eat dinner tonight, so I view that as some sort of progress. This afternoon, I helped Ann prepare some of the dishes she plans on serving tomorrow, and what I began to see during this past week, is that in essence Ann has allowed me into her world of family holiday traditions such as cooking, baking, and decorating. While I have been doing things all week, I was pretty much oblivious to this fact, until I slowed down to absorb all that we did together in a few short days. In any case, I guess what I am trying to say is since Mattie's death I have felt directionless and the holidays make me feel even more uncertain. But in the midst of this emotional chaos, it is very special to have someone who intimately lived Mattie's treatment with Peter and I, try to make me feel a part of something.

It was funny, while I was in the kitchen with Ann, her younger daughter, Abigail was requesting that her mother make her pasta. It was the way Abigail asked Ann, as well as the type of pasta she was asking for, that reminded me of Mattie. It made me stop and I even said to Abigail that her request reminded me of someone. She knew exactly who I meant. I have noticed that conversations about Mattie capture Abigail's attention, which only indicates to me that his friendship meant something to her.

It is ironic, being surrounded by children should be hard for me, and yes at times it is. Intensely hard, but somehow their energy is refreshing and reminds me of Mattie. As I was sitting with Mary today, Katie, Ann's oldest daughter, came up to Mary to hug her and say good-bye to her before she left to see a movie. I have seen Katie say good-bye to Mary numerous times before, but what I wasn't expecting, is after she said good-bye to Mary, she put her arm around me to say good-bye. Perhaps to my readers this doesn't sound like anything out of the ordinary, and maybe you are right, but to me, I felt as if Katie was trying to tell me something. We spend a lot of time together and I guess it just meant something to me that she feels comfortable enough to connect with me. After how I felt today, this innocent gesture meant a great deal to me.

When I got home tonight, Peter and I had dinner together. Peter could tell I had a lot on my mind, and though I couldn't verbalize things at first. He was persistent, and he was able to help me process some of my anger and feelings. We are both so fragile that some times what people say to us or don't say to us usually sets us off. Not talking about Mattie and not asking us about him not only makes us uncomfortable but this is asking us to pretend or put on a facade that things are NORMAL. I may have been able to do this at one time, but I can not anymore. My friend Karen tells me all the time, in jest, that I have every right in certain instances to just tell people straight out how I perceive them. I am not doing Karen's way of phrasing this justice, but it always gets me to laugh.

I would like to end tonight's posting with two messages and then a link to another song. The first message is from my friend, Charlie. Charlie wrote, "Pain can be threefold, physical, emotional and/or mental and it sounds like you are suffering from all three. I hope that your physical illness at least can be addressed this week so that you don't have to continue to suffer that on top of everything else. I know you were concerned that all the connections you made while Mattie was alive would be lost after his death but it is clear that you and Peter have also touched the hearts of everyone you've come in contact with. The offers and concern from Mattie's physicians are very special and reflect the respect that they have for you as a person and as Mattie's mom. I really enjoyed your mom's story about the Christmas of 2007; what a lovely gift to get from her at this time of year. I am sure that her memories spurred even more details in your own thoughts. Today as many people "ramp up" frantically toward the holiday, I wish you the love and peace that the holiday was meant to convey. You are, as always, in my thoughts."



The second message is from a former student and now my friend, Susan. Susan wrote, "Wow Vicki, has it really been 15 weeks since Mattie left us? He is still such a part of my day to day existence. I can't even begin to tell you how many times a day he comes to mind. It doesn't matter where I am or what I am doing.... there's Mattie!Especially now when Ari & I are shopping. I'll be browsing and VOILA I pick up something thinking Mattie would love this!! And then I remember that he's gone. Sadness dampens my spirits like a hand in a soggy mitten feels cold. Ariel utters only one word, Mattie? She knows. To add a twist to an old Christmas line, "Yes Victoria, there is a Mattie and he is with so many of us."On Saturday Ari & Eric went on a photo shoot, yes in the snow. They went to Roosevelt Island and I asked they take a picture of if for me . I've attached it as I thought you might enjoy it.Vic, I'm not good at writing my thoughts or feelings so I hope this relays to you that Mattie is remembered by many of us."

As I was driving home tonight, I heard a song by Carrie Underwood entitled, Temporary Home. I must admit I did not pay attention to the first part of the song, but when I heard the words, Temporary Home, the song immediately caught my attention. In many ways, Mattie's temporary home was with Peter and I, perhaps not where he belonged, just a a mere stop onto where he was going. Any case, if you want to hear this song, click on the link below.

http://musicremedy.com/audio/index.cfm?fuseaction=showvideoplayer&audioid=39157&quality=10

Tuesday, December 22, 2009

Tuesday, December 22, 2009 -- Mattie died 15 weeks ago today!

Tonight's picture was taken in December 2002, Mattie's first Christmas! He was 8 months old, full of energy and the picture of happiness. I think it is important to share these pictures because this was the essence of Mattie.... Alert, vivacious, in constant motion, and curious! When you look at this picture, there is absolutely NO indication that within this beautiful baby lies a killer, that we now know as Osteosarcoma.

Poem of the day: IN LOVING MEMORY - A Grief Poem By V. Villaseñor

We remember you
Even when the world forgets
We remember your smile
Even when we can't find anything to smile about
We remember your laughter
Even when nothing is funny
We remember yellow (FOR Mattie it was RED and ORANGE!) is your favorite color
Even when it hurts to see it brightly displayed
We remember your tears
Even when we tried to comfort your pain
We remember the precious sounds you made
We remember your smell
Even if we never smell it again
We remember how you felt
Even if we can't hold you
We remember you
Even when it hurts the most

As we reflect on Mattie being gone from our lives on this 15th week, I think this poem captures the essence of how Peter and I feel! WE REMEMBER YOU! We remember his infectious smile and humor, his beautiful eyes, his wit, his incredible energy, and the list goes on. All we have now are memories, but how I long for the days we could hold hands, hug each other, and smile together.

I woke up not feeling well today, in addition to having a chronic headache. Because getting sick over the holidays is a nightmare, I wanted to address this before I felt worse. So I started my day text messaging Dr. Bob back and forth. Yes Bob was Mattie's doctor, but I appreciate Bob's medical support through the aftermath of Mattie's death.

Today seems to be the day of reflections. I bumped into Mattie's preschool director, Kim, at the grocery store. We had a nice time chatting and REMEMBERING Mattie. Mattie grew emotionally at Resurrection Children's Center, and his teachers became an amazing support system for me. Kim and I reflected on Mattie's love of the snow and the sledding he did at the school. We chatted about the Foundation and even Mattie's Facebook page.

I was working with Ann today on all sorts of projects. I find that sometimes staying busy helps me tremendously, yet I am not TOO busy to reflect on how things are impacting me, or how I am feeling. Living with the loss of Mattie is like NO experience I have ever had before. It is almost hard to describe. I can get through the day, and it may even look like I am functioning, but throughout the day I am carrying an invisible weight on my shoulders. You can't see it, but I can feel it. It makes doing the typical tasks one does in a given day, challenging and requiring great effort. By the end of the day, the invisible weight of grief becomes harder to carry.

Tonight, I went to the Nutcracker with Ann and her family. I had never seen this version of the ballet before. It was performed by the Washington School of Ballet, and the performance had a DC twist to it. I enjoyed it very much, and of course any opportunity to hear Tchaikovsky music is always a treat. Ballet is a beautiful art form, that isn't always well supported or appreciated. But it was wonderful to see so many young children in tonight's performance as well as those attending it!

As it is Christmas week, I am deeply grateful that others in our life realize just how difficult a time of year this is for us. When I got home from the ballet, Peter's cell phone rang. Who was it? But Dr. Shad, the director of the Lombardi Pediatric Cancer Center. She is also the physician who was on call the week Mattie died. She helped us tremendously throughout Mattie's treatment, and also advocated for him in his death. Tonight, Dr. Shad called to tell us that she wants to give us a house in Duck, NC for the month of January. She wanted to know what we were doing for Christmas, and was worried we were going to be alone. She has offered to visit us this week, or help us in whatever way we may need to get through the holidays. When she offered us the house in North Carolina, my initial thought was I can't picture Duck in the winter time. However, I told her I would think about it, since we took Mattie to Duck three summers in a row. It is an area that holds special meaning to us. I have to pause in amazement over the kind of doctors who treated Mattie. Bob is my first line of medical defense now, Kristen (Mattie's oncologist) is our friend and writes to us every Tuesday, and Aziza (Dr. Shad) is trying to care for us after Mattie's death. Mattie was the patient here, but his doctors haven't abandoned us, and I felt that this kindness needed to be mentioned. These gifts of kindness to me are better than anything you could buy me, and I reflect on these things at Christmas time.

My mom wrote to me today, and she has started a new series for the blog this week. Reflections on Christmas. Peter and I found tonight's message very touching and I am happy she captured this special Christmas of 2007. I think hearing her perspective is important and I hope you enjoy this story as much as I do.

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The Best Christmas Ever By Virginia R. Sardi

The best Christmas I ever had was in December 2007 with Mattie and the rest of my family, Mauro, Vicki and Peter. I will always remember that Christmas as one of the happiest I ever had and if I could relive any part of the past, I would chose to rewind the clock as we do our videos and DVDs to repeat our vacation together again and again and again! It was perfect from beginning to end and started with a reunion at the Ft. Lauderdale Airport with Mattie making a running leap into my arms and giving me a great big, loving hug. Have you any idea what that meant to me then and what it means to me now in retrospect? Time with him was always precious and fleeting because of the geographical separation that kept us apart and every first encounter with Mattie was a moment to reflect on how much physical and intellectual change had taken place since the last time I had seen him. As in the past, I immediately noticed how much he had grown but this time, I witnessed how much more he anticipated the days ahead because I could sense, he understood he was no longer confined to mostly indoor activities as in Washington, DC but was free to explore the great outdoors where he could romp on the beach and discover for himself all of its hidden treasures. At the airport, I already knew that being five made a difference in how he perceived his new environment and that he was very excited about getting started on his Christmas adventure.

Mauro and I arrived in Florida from Los Angeles earlier than Mattie and his family because we had a longer flight and wanted to be rested and ready to welcome them at the Fort Lauderdale Airport when they arrived. It was one of our greatest pleasures to see their smiling faces as we greeted them to sunny Florida from the cold chilly Northeast. You could feel the happiness in the air as they contemplated the leisure time to be spent at the beautiful beachfront of our hotel basking in the glorious Florida sunshine to their hearts delight. In the past, our reunions always took place a day or two after Christmas, but in 2007, I was determined that it should include Christmas Day itself. Was it a premonition of impending tragedy or a spontaneous urging brought about by a perceptive sixth sense? I will never know the answer to that but I do know that in retrospect, I made the right decision for the memories I have of Mattie on that Christmas vacation are priceless treasures that I hold very close to my heart.

One of the most significant recollections of the trip involved Mattie’s adventures on the beach. Vicki had vacationed with her family on the outer banks in North Carolina for a few summers when Mattie was only a little baby. Although we did not go with her, Vicki explained that Mattie disliked the beach and cried when he was placed on the sand. He didn’t like its texture, unfamiliar and strange, and found the whole experience frightening especially when accompanied by the sound of big, overpowering waves that came crashing down all around him. By the time he came to Boca Raton, he had worked out his fears and realized the extraordinary possibilities that a day at the beach could offer. He figured out that sand when mixed with water can be shaped into a building block when using a pail and was a perfect medium to use to construct his “pretend” castles and forts with towers, moats and roads for people and cars, of course. He became the master at mixing the sand with water to make the sand pies necessary for a good foundation. His level of concentration and creativity were amazing and were appreciated by other beach guests who admired the complexity and originality of many of his designs. Sometimes others would join in the fun and he loved all the attention his projects received and the opportunity to explain what he made and why he did it. He was the budding seaside artist of Boca Raton and engaged the talents of his Mom and Dad to implement some of his more ambitious plans but always with an eye for making something original. On this trip, we took Mattie to the Florida Everglades for a ride on an air boat through the swamps. The mix of water and muck was a sight to behold and as we boarded this open air boat navigated by a female Captain, Florida’s version of Annie Oakley, who advised us to put cotton balls in our ears to help block the engine’s loud noises and once we got started we understood just how noisy these boats are because the cotton balls helped little to protect us from the wicked sound of the whirling engine. It was an experience being aboard the boat with the wind whistling in our hair and Mattie and I hunkering down together to protect ourselves from both the noise and the wind. Captain Annie seemed fearless and took us out far from shore in search of alligators. Along the way we spotted turtles, herons and other varieties of natural wildlife but Captain Annie was determined to find that elusive alligator for all of us to get a close look at in its natural habitat. A denizen of the ‘Glades herself, she could track them down easily because she was familiar with their habits and sure enough she found a few that circled around our boat which had come to a stop. One alligator actually came right up to the boat and looked in at us. Mattie was fearless, jumped up from his seat to get a close up look at the alligator for himself. He learned that day that alligators are not very smart but can be very dangerous because of their strong snapping jaws. He was impressed with his proximity to a wild animal and went on to actually see and touch a python for himself at a nearby wild animal park. Needless to say, our little artist on the very next day went to the beach to fashion an alligator made out of sand. It was almost a replica of the one he had seen on Captain Annie’s boat, just a little smaller. Mattie exhibited all his creativity and passion for life in his nimble ability to connect all of his experiences by synthesizing adventure, exploration and artistic impulse into one unified and uniquely identifiable expression of his personality. Everything he did was tied to his perception of nature, his environment and his desire to recreate a vision of his surroundings so that he could capture for others what he saw and what it meant to him. His love of the beach encompassed all of the seaside objects to be found by a curious little boy who both plays in the water and is at the same time intrigued by what the tide sweeps up to the shore. He incorporated seaweed into his Castle structure using it for landscaping and he collected seashells, sand dollars and ocean stones on every outing. He also was on the look- out for jellyfish that were fascinating to observe but was cautious enough not to get too close to avoid getting stung. I have a drawer in my bureau where I keep a little stone that I collected with Mattie on the beach one day while we were walking and making our selections of things to take back home with us. It is small, white and gray with a hint of blue, like the ocean itself. When I showed it to Mattie, he loved it too and pointed out that the water had made it very smooth and nice to touch. In preschool, Mattie was known as Mattie Magnet to his classmates and it was appropriate because other kids were always attracted to him. These days, when I want to feel closer to Mattie and reminisce about our Christmas vacation together, I open that drawer, pull out the stone which always reminds me of the ocean with its bluish cast and it makes me think how much it is like Mattie himself, smooth and unique with a pure and natural quality that attracts you just like you would expect a Mattie Magnet would!

While we were physically active trying to keep pace with Mattie, an almost impossible task, we had to figure out how to celebrate Christmas and to prepare for Santa’s arrival in Boca Raton which was a major importance to Mattie.. How we handled Christmas Day at the hotel on a bright, beautiful sunny day in Boca Raton will be the subject of the next installment because it is a major part of why Christmas 2007 was the Best Christmas Ever!

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I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist, Dr. Kristen Snyder. Kristen wrote, "In Northern Michigan today...I might as well be half a world away. Yet, it is still a Tuesday, the mark of another week without your Mattie. This week will no doubt be difficult for you. Know that there are many of us out there, supporting you this holiday season, thinking of you and wishing you peace and hope this Christmas. Thinking of you today and always."

The second message is from my friend, Charlie. Charlie wrote, "I am sure the stress and the grief surrounding Mattie's absence from this of all holidays, is making your headaches even worse. I do wish there was something I could do to relieve the pain you are feeling. All I can say is that you have to do your best to take care of yourself even when you don't want to; get a massage, meditate, do something loving and caring for yourself and give yourself the space and permission to mourn. I completely understand what you were saying about children giving us another perspective on things; as I dug out (multiple times) over the past few days (mutter, mutter), I kept saying to myself, snow is for the young, I would not mind this so much if I saw some of the neighborhood children out enjoying this. However, all the children on my block have grown up and moved away, including my own, so the snow just isn't much fun for me. I know we are heading toward the New Year and you are rightfully concerned about what you are going to do with your future, but I suggest you give it some time, don't make any irrevocable decisions and be as patient as you can with yourself. As I practice today I will send you the energy and the peace that I find in it."

The third message is from my friend, Angie. Angie and I met at Boston College, during graduate school. Angie wrote, "I send you greetings at this season. I think of you and Mattie, EVERYDAY, but especially so at this time when it must be so difficult for you. Although I can't imagine what it is like to lose a child, the loss of my mom changed the holidays for me. My parents used to love this season, and so it became my favorite time of year, too. Now, I am sorry, but honest to say, it has become my least favorite. Oh yes, now that some time has past, I do go through the motions (sometimes and sometimes not), but it is always with an emptiness inside. You, Peter and Mattie are to be most admired for your courage, love, support and warmth. You are what the true meaning of Christmas is all about. Vicki, your participation in the holiday traditions with your friend's children is truly wonderful and amazing. Your table decorations were beautiful. You have a flame within you that warms all those who know you. I know you must have a special angel behind you that continues to encourage you and give you the strength under the most difficult of circumstances. What better gift could all of you have given than the Mattie Foundation? You are what the true meaning of Christmas is about. You have given so much to others in need, in spite of your own loss and needs! You are an example that we all strive to emulate. I wish you many blessings during this holiday season and for the new year. No one deserves them more than you two. Vicki, I liked you from when I first met you, but, at that time, I didn't know how special you really were!"