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

December 26, 2009

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."

December 25, 2009

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.

December 23, 2009

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

December 22, 2009

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. VillaseƱor

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!"

December 21, 2009

Monday, December 21, 2009

Monday, December 21, 2009

Tonight's picture was taken in December 2002, Mattie was 8 months old, and therefore this was his first Christmas. Peter and I wanted to take a picture of Mattie to feature on our Christmas cards that year, and when we saw the first snow fall of the season, we dressed Mattie in his Santa suit, dragged out his entertainment saucer in the snow and covered it with a blanket. We took at least 30 photos of Mattie in the snow that day and then selected the one I posted here tonight for our first family Christmas card. It is still a photo I cherish today, and both Peter and I can remember this whole photo scene vividly.


Poem of the day: My memories by Jessica L. Gray


It seems as if yesterday
you held out your hand
for a walk in the park
a play in the sand
I know it was just last night
I tucked you in bed
saying our prayers
with a kiss on the head
Sometimes I wonder why you had to go
But the answer to this I already know
So much suffering just can't go on
I finally had realized what I knew all along
I had so much to say
I Love You's to tell
I started to slip
and I almost fell
But I kept on moving
one day at a time
My memories kept going
on and on in my mind
The day you were born
Your first big boy bike
I know you put these there
for me to keep in sight
I know you are with me
each hour and minute
I feel you around me
There seems to be no limit
So my darling son
I want you to know
I miss you and Thank You
for helping me let you go



My headaches are back in full force. I am not sure if this is due to the fact that my body is getting used to the medication prescribed by the neurologist, or that subconsciously I know Christmas is approaching, and with that I feel an inordinate amount of stress and sadness. Either explanation seems very plausible, but on top of dealing with grief, I am also back to dealing with chronic pain and the inability to sleep.


This morning Charlie wrote to me. My faithful blog readers know about Charlie, but for those of you just tuning in, Charlie was a former student of mine, who I have gotten to know and become friends with over the years. Charlie writes to me each and every day since Mattie got sick. This level of devotion to our friendship and the spirit of Mattie are deeply appreciated. In Charlie's message below, she reflects on Mattie's time playing in the snow. Because we live in Washington, DC, we rarely get much snow accumulation during the winter. However, Mattie did have his fun in the snow, and I did not think about it, until Charlie asked me about it. Mattie first went sledding in Boston with his cousins. In fact, his cousins' school has a wonderful hill behind it, and while we were visiting it happened to snow (no surprise after all, it is BOSTON!). Any case, Mattie's aunt, invited him to go sledding. I freely admit to being a neurotic parent and I worried about Mattie sledding. I was afraid he would get hurt and so forth. Of course, I realized he had to have fun and experience the joy of sledding, but each time he went down the hill, I had my heart in my mouth. Who knew we would be dealing with Osteosarcoma and that battle a few years later. It makes sledding look like a walk in the park. Mattie loved sledding, spending that day with his cousins, and learning to play in the snow. I am so happy he had that special moment. Mattie also had one or two snow days in preschool as well. One of Mattie's preschool teachers, Kathy, would let the kids sit on plastic food trays and slide down the school's sloping hill. Mattie absolutely loved it. The more wild the ride, the better for him! He enjoyed the sensation and the feeling of gliding down the hill on snow, which is ironic, because typically Mattie was a very cautious individual.


The past two days, Ann's children have been sledding and enjoying their time in the snow. It wasn't until Charlie asked me about Mattie and his love for the snow, did I reflect on those memories. Now that I see Ann's children getting their snow pants on and prepare for their adventure, I can't help but wonder what Mattie would have done on a day like today?! I am sure you can only imagine what my next thought was..... which is Mattie should be here with us today, and how unfair that he can't be. There are some moments where Mattie's death just hits me and at times blows me over inside. What I have come to understand is that children are a gift. Children give us perspective and allow us to have aspects of true happiness, which on some level, I feel, we adults work very hard at times to block these vital things from our lives. Children help us see beyond ourselves, they help us take a break from our daily tasks and appreciate the more simplistic and more meaningful things around us (such as playing in the snow for example), and the irony is most parents do not realize how beautiful their daily routine is with their children. Not having this routine, I assure you I know VERY well of what I am saying! If I can make you stop and reflect on how lucky you are to have your children around you, if I can get you to read one more bedtime story, give hugs at night, and appreciate the hard work of preparing for the holidays to bring joy to your children's lives, then I would say I had a successful posting tonight. The message I am sending this Christmas is DON'T TAKE FOR GRANTED THE HEALTH OF YOUR CHILDREN AND THEIR PRESENCE IN YOUR LIFE!

I spent part of the day with Ann, helping her get ready for the holidays. Her children were all home, and the energy and happiness they exuded was very evident. I shared with Ann some of my concerns for getting through this week, and I realize that my concerns are much deeper than just this week. I really am questioning the future.

Tonight, Peter and I had the opportunity to join Jerry and Nancy for dinner. As many of you know, Jerry and Nancy were Mattie's favorite music volunteers at the hospital. They visited us weekly, when Mattie would allow them into his room. Jerry and Nancy would play, a "Name that tune" game with Mattie, and he really loved the spirit of competition from this interaction. Jerry even gave Mattie an electric keyboard so that he could pursue his musical interests and talents. This is my third dinner with Jerry and Nancy since Mattie's death, and each dinner I find very fun, humorous, and at times therapeutic. Therapeutic because they saw first hand the way we lived for 13 months, and we reflect on this, the beauty of Mattie, and naturally the pain that we are now living with. Our days and nights in the PICU were VERY long, and having volunteers like Jerry and Nancy truly helped get us through some nights. Peter and I met them during Mattie's first week in the hospital back in August 2008. I was so upset that week, as I was trying to figure out the whole chemotherapy regimen. Jerry and Nancy entered Mattie's first chemo room, and for 30 minutes, we all had a good time together, singing and trying to get Mattie to smile. It seemed to work, and anything that worked, I naturally clung to.



I would like to end tonight's posting with a message from my friend Charlie. Following Charlie's message is a song I came across today on the radio that I wanted to share with you. Charlie wrote, "All this snow made me think of Mattie and how much he would have enjoyed playing in it, sledding, building a fort and a snowman. I realized the last time we had this much snow he was not born yet (1996) and now he missed this huge storm. I was shoveling snow and thinking of Mattie and I heard bells. Many of us have wind chimes but as far as I know we all take them down for the winter since the wind tends to be pretty fierce. I looked around saw no chimes on anyone's porch but still I heard bells. I think Mattie sent a message that he knew many of us were thinking of him and that they are making snow angels up in heaven. I am glad to hear that you and Peter are out and about and getting things done in spite of the weather. As I am out and about today I will be thinking of you and keeping you in my heart."

I heard Toby Keith's song, "Cry'in for Me" on the radio today. What caught my attention, was the reasoning behind why the song was written. Toby Keith created this loving tribute to his friend, Wayman Tisdale. Wayman was a talented jazz bass player, who died in 2007 of cancer. The song is touching, and I decided to see the video of it tonight. While watching the video, I could see clips of Wayman embedded in the video. I quickly noticed that one of Wayman's cancer treatments, left him with a prosthetic leg. This immediately caught my attention, and I googled Wayman Tisdale. Wayman died of NOT JUST ANY KIND OF CANCER, it was OSTEOSARCOMA! Below is a link to the song. I hope you find it as meaningful as I do.



http://www.youtube.com/watch?v=UeiKg5jtAF8

December 20, 2009

Sunday, December 20, 2009

Sunday, December 20, 2009


Tonight's picture was taken in December 2004, when Mattie was two and a half years old. To me this picture captures his angelic face. Trying to take a picture of Mattie when he was a toddler was always a feat. He was in constant motion! Mattie loved picking out a tree and the whole decoration process. He was very gentle with the ornaments, and from a young age, was always there to help me decorate the tree.

Poem of the day: Sweet child of mine by Kathleen Cowan


Where are you now, sweet child of mine
Where are you now
Are you the whispering in the wind, the gentle breeze
Are you all the things I do not understand
Are you the heavens and the earth
Where are you now
Are you my protector in the dark
Are you there to see the tears that fall from my face
And wipe them gently away and give me the will to go on
Does your courage and bravery in life
And the fact that I was always
So proud of you, and still am
Give me the strength and inspire me to tell
The world how wonderful you are
But where are you now?
I was always there for you
Did I let you down
When you had to take those last steps on your own
Did I let you down as I held your hand
You have gone to a place and I could not go with you
But some day, my darling, I will come to you again
As you are with me eternally
You are every breath I take, every action I do
You are in my dreams, you are my dream
Where are you now, sweet child of mine
I am the sound of your breathing
I am the sound of your heart beating
I am your life and you are mine
Together for eternity
Your loving son always


Last night, before I went to sleep, I opened up my nightstand drawer, and pulled out Mattie's tooth fairy box. I keep special things in this drawer. Inside the tooth fairy box is Mattie's last tooth that he lost. Why is the tooth in the box? Because when the tooth fell out, Mattie had me write a note to the tooth fairy requesting that she leave both a gift and the tooth behind. He told her it was important to him that he keep the tooth, and hoped she could make an exception! Mattie was thrilled to see the next morning both a gift and his tooth left behind in the tooth fairy box. In fact, the tooth fairy left him a note, letting him know that because he asked so nicely in his letter, she decided to grant his wish to keep his tooth. Last night, I held the tooth fairy box and examined the tooth. It is one of the remaining physical parts of Mattie I have left, and this box and its contains are naturally very important to me.

This morning, for the first time since Mattie's death, I made homemade waffles. Practically every weekend I would get a request for homemade waffles or pancakes. Mattie loved when I added cinnamon, nutmeg, and cloves to the batter. I haven't had the heart to make waffles because Mattie was always my waffle helper and it did not seem right eating them without him. But today in honor of Mattie, waffles were made, and Peter and I talked about Mattie. I said today's breakfast was in honor of my "Moosh."

Peter and I went out and ran all sorts of chores. We got around, despite there still being snow everywhere. The roads were much better today, but the sidewalks and side streets are still a mess. So no surprise to me, area schools, events, and the government are all closed on Monday.

Peter has been shoveling snow for the past day and a half on our deck. Last night, when Peter came back inside, he let me know that Mattie's chimes were twinkling away. I told him that Mattie was out there with him helping in his own way. In fact, if Mattie were alive, he would have been right along side Peter. Mattie always wanted to observe and participate in helping out Peter with chores and other projects. Which is why Peter would call Mattie his "little buddy."

We accomplished a lot today, which in a way was a good feeling, since there are some days, I can't get anything done because I am not feeling up to it. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Sorry that you were unable to go to the Nutcracker as planned yesterday. I hope the sunshine today enabled you to get out safely. As for the Veggie Tales response, I hear and read frequently that the most innocent things can bring you back into intense memories without any warning and like a swimmer caught by a rip tide all you can do is try to keep your head up, tread water and wait for it to subside. This is an emotion that takes over and you cannot fight it, so you have to be there, remember to breathe and those really intense moments will pass. II know the loss and the ache will never go away. I wish you the strength to continue on your path and know that many of us still pray for you daily."