Mattie Miracle 2021 Walk was a $125,000 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: 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

August 14, 2010

Saturday, August 14, 2010

Saturday, August 14, 2010

Tonight's picture was taken on April 4, 2005, Mattie's third birthday party! Mattie was in love with the TV show, Blue's Clues. So we had a Blue's Clues party. Mattie helped me with decorations, and we designed a game in which the children were given notebooks, just like on the show, and had to collect clues to figure out what Blue's (the TV dog) wanted to give Mattie for his birthday. I also found this wonderful college student that year, who came over to do magic tricks which included pulling out a live bunny (his pet named Hobbs) out of a hat. Not sure what the kids loved more, the magic tricks or the bunny! Mattie sat on the couch after the show and got to hold and pet Hobbs. That was one of the highlights of his day!

Poem of the day: In My Dream by Charlie Brown

I couldn't hear your voice
I didn't see your face
In my dream I knew it was you
And I kept you in my space.
In my dream I'd won
But in my life I lost.
I fought for you so hard
I would have paid any cost.
I'd give everything I have
To see you or hear your voice.
I know that can no longer be
For cancer took away that choice.
So I will seek you where I can
Perhaps find you in my dreams.
And in the stories of our friends
Immersed in memory's time stream.

Last night, when I finally got to sleep, I actually stayed asleep. This was a first in three weeks. I sure hope this is a trend, because the lack of sleep and non-stop migraine headaches are a very bad combination for me. I had the opportunity to say good-bye to Ellen and Charlotte this morning. We helped them load their luggage into the car and wished them a good time on their vacation. Peter and I are very grateful to Ellen and her family, because I have a feeling if she did not give us her house for the week, we most likely wouldn't have gone away. With the state Peter and I are in, it doesn't make sense to invest time, money, or energy into planning a break. I tried to approach today with a different mindset. Typically no matter where I am, I want to do as much as possible in any particular day. This would also translate down into vacation, where I would want to be active and tour around. But my energy is not what it used to be, like it was before Mattie's cancer. Cancer has taken a toll on me. Now as I watch people jog or bicycle ride, I can only feel an internal ache. An ache which says to me, I no longer have the energy to do this. I hope one day, this feeling will change.

Peter and I had breakfast outside on Ellen's porch. It is cooler today than it was when we were here in July, so being outside is very pleasant and doable for Peter. Trying to connect to the outside on this vacation is very important to me. I am taking every opportunity to listen to the waves crashing onto the shoreline, hearing the seagulls laughing overhead, as well as focusing in on the sounds of the cicadas and the crickets which are out in full glory now. All of these sounds are healing. Needless to say this is a very different vacation, than what I most likely would have done in the past. Peter and I attempted to go into two different towns today, but the weekend traffic was so horrible, and finding parking was virtually impossible that we gave up and came right about to the house. I spent a good portion of the afternoon on Ellen's hammock, outside, listening to the ocean.

It literally took us 45 minutes to commute from one neighboring town to another today, so while Peter was driving back, I fell asleep in the car. He was driving and also massaging my arm, and that put me right out. This cat nap in the car greatly helped my headache. I then proceeded to sit in the hammock and I had Katharina's lavendar blanket wrapped around me. This is the blanket she gave me for my birthday, and it is so soft, it almost begs one to sleep.

Peter went out today and bought fresh red snapper, and tonight we grilled it and I prepared many of the fresh vegetables we bought at the farm stand on Thursday. It was a delightful dinner outside, as we listened to the sound of the surf and the birds singing. After dinner, Peter and I went for a walk. We walked on the beach for a while, and then just sat on the sand. There was a wonderful waxing moon out tonight, and in addition to this sight, I had the fun of watching several piping plovers on the beach. I included a picture of a plover tonight, because they are one of my favorite beach birds. They are adorable and entertaining all at the same time. Though they are tiny birds, they can move quite quickly with their little legs. For at least a half an hour, we sat in the sand, and watched these birds run along the shore line, catching crabs to eat, and yet in the process they never got wet. When the waves would start to crash toward the shore, they would literally run as fast as their little legs would take them to avoid getting even a drop of water on themselves. These birds literally follow the waves. As the water recedes out to sea, they run into it, and as a wave comes crashing to shore, they ran toward us on the beach. Peter and I used to watch piping plovers in Duck, NC, and I absolutely loved that sight then, and seeing these birds tonight reminded me of our days before we knew what cancer and death were really about.

You may notice that I am fortunate enough to begin tonight's posting with a poem as well as end it with one. I am very grateful that Charlie and Nancy share their creative talents with me, as they so eloquently capture what I say and transform it into poetry. I would like to end tonight's posting with two messages. The first message is from my friend Charlie. Charlie wrote, "Thank you for the picture of Mattie; what a beautiful smile he had. He certainly had a wonderful, playful imagination and the ability to use familiar items in new ways. It's clear this is another thing he inherited from you; it reminds me of your ability to design and use items in a different way like Abbie's stuffed animal habitat. I'm glad you and Peter had a good time shopping; it sounds as if you both enjoyed yourselves and were able to see the humor in the frenzy of all that was going on around you. Congratulations to Charlotte for her performance in the play. Public speaking is a great skill to have and it is wonderful that she is developing this composure early on. I know it is hard for both Ann and Mary to have to acknowledge the shrinking of their family, clearly they've adopted you and Peter (and the reverse as well); real friends are the family that we were not born into. As I practice today I will send you my wishes for a relaxing weekend with Peter and friends. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "As I read yesterday's blog, I was not surprised to learn of your poor sleep again. It is hard to rest when the mind is filled with disturbing thoughts. I am glad Charlie brought up the idea of feeling guilty and having pleasure while you are grieving. Peter and you have nothing to feel guilty about. You gave and gave and no one can explain why Mattie had to die. This is a paradox of life. Death is a finality, a comfort to those that were suffering and it is suffering for those left behind. Mattie lived life fully even when he was in pain. He wouldn't want you to remember only the pain, he'd want you to see the joys left for Peter and you. You can make room for some joy in your life. It is not a betrayal, it is a lesson that life does go on. Mattie does live on in all who knew him. You let us see that each and every day that you have shared photos and stories. Thank you for your courage and caring. Be gentle with yourself. With love always and in all ways."

YOUR SMILE by Nancy Heller Moskowitz

Each picture that shows a smile,
Carries me from mile to mile.
I've got to learn to treasure these days,
For you have had to go away.
Never far from my thoughts are fears,
That each day will flow with tears.
I know that it's not the only way,
To remember you each and every day.
So I carry your smile inside my chest,
Like a warm and comfy living vest.

August 13, 2010

Friday, August 13, 2010

Friday, August 13, 2010

Tonight's picture was taken in August of 2006. Mattie loved this collapsible tunnel that he was sitting in, and that day he was attempting to create some sort of tunnel system on the staircase. He wasn't very successful on that front, but he had a fun time trying! I snapped a picture of him in action! You will notice in this picture the line of shoes trailing up the staircase. This was where Mattie liked keeping his shoes. Over time, I just got used to keeping them there, and it was only very recently when the Washington Post photographer was coming to our home, that I finally took all the shoes off the staircase. I miss seeing those little shoes pointing my way up the stairs, and I naturally miss that beaming face wrapped up inside the orange tunnel.

Poem of the day: Another loss by Charlie Brown

I miss you my son
In so many ways
I miss who you were
How I wish you'd stayed
I see your friends
Growing up without you
Taking on new challenges
I know you'd have too
That's another loss
A hard one for me
The man you'd have become
That's what I wanted to see
Now forever in my heart
You'll be a small boy
I so much wanted
Every mother's hope and joy
To see her child change
And to watch him grow
To share his special moments
To see that smile glow
That future was gone
When I lost you
I can only look backwards
That much is true
Seeing your friends now
That makes me sad
Knowing the future
You could have had
This is a big loss
It's really hard can't you see?
I'm doing my best
So be patient with me.

Today was an overcast day by the beach, and it looked like it wanted to rain most of the day. Peter began his morning by walking on the beach, and I think he enjoyed being able to do this. Peter has always been a morning person, and I am a night person, which worked out well especially when Mattie came on the scene. It also worked well for us in the Hospital, because I could easily stay up until 2 or 3am with Mattie. I find it particularly interesting how I am going through another stretch of having trouble with sleeping. I wake up each morning at 3am. Like clock work. Nothing wakes me up, I just notice my eyes pop open. Some nights it is easier to go back to sleep, but nights that I have things on my mind, returning to sleep is almost impossible. I feel this pattern has been going on for three weeks now, so by day, I am very fatigued.

Despite having trouble sleeping last night, I do recall a dream. In the dream I was pushing a baby stroller. In the stroller was Mattie (as a baby). I couldn't see his face per se, but I was talking to him and could feel that it was Mattie. I distinctly remember in my dream, that there was a person who was trying to steal the stroller with Mattie in it away from me. I remember struggling with this person, and unlike my reality, in the dream I won. I reclaimed back the stroller and Mattie was safe. I have no idea what all this means, but I see even in my dreams I am struggling with the fact that Mattie was taken from me. Through cancer, I lost control, and in my dreams, through fighting, I seem to regain control and Mattie. I even vividly remember the stroller I was pushing and what it looked like. I remember it, because it was Mattie's stroller.

Peter and I went to the outlets today, which are quite extensive in Rehoboth, MD. We chose to do this because of the weather and because later in the afternoon, we were going to attend Charlotte's play (which was being performed close to where the outlets are). Last night, as I was sitting with Ellen and Charlotte at their dining room table, Charlotte invited Peter and I to her performance today. Charlotte was the star of the play, an Aesop Fable, entitled Androcles and the Lion. I watched Charlotte rehearse her lines last night, and it was lovely to be able to watch her perform her role. She spoke clearly, you could hear her, and she seemed really to get into her part. Her character, Androcles, basically befriends a lion, helps take a thorn out of his paw, and through friendship and gratitude they learn a lot about life and each other. It was a charming play, which was followed by two other small plays, Jack and the Beanstalk and Puss and Boots. There was a little boy, whose real name happened to be Matthew, who performed in Puss and Boots. There was something about him that reminded me of Mattie. Maybe it was his tall and slender figure, or his impish expressions. Whichever it was, seeing this boy made me smile. I see Charlotte and Abigail in all sorts of camps this summer, and I honestly do not know what Mattie would have gravitated to as he got older. I have some ideas, but I just don't know. I can only soak in these environments through his friends.

Peter and I had a very successful time shopping. Peter rarely gets things for himself, I think this was a trend that started when Mattie was born. Our focus became Mattie. However, when I heard that Peter wanted to look for some things today, I honed in on that, and made sure that he took care of himself. In the midst of shopping, I took Peter into a handbag outlet. He couldn't get over the frenzy within the store. Women were everywhere, some pushing each other, and others modeling handbags for each other. He got a chuckle out of this, and while I was in the store, Ann and I started to text message each other back and forth about the purses in the store. Peter even took some pictures of purses so that I could convey to Ann what I was seeing. The salespeople were getting a kick out of us, in fact, some of them actually wanted to hear Ann's opinion that I was receiving through my Blackberry. I told Ann it was as if she was virtually shopping with me in this store. The beauty of having a Blackberry!

This evening we went out to dinner with Ellen and Charlotte. They introduced us to a wonderful restaurant where the tomatoes were absolutely beautiful in color and in taste. I even learned a new acronym tonight, EVOO. I use EVOO all the time when I cook, but frankly did not know it stood for Extra Virgin Olive Oil. I told Ellen, I felt in the know tonight! Ellen and Charlotte leave for their trip tomorrow morning, and it has been fun hearing about their upcoming adventures to Arizona, Utah, and Nevada.

Meanwhile, this weekend Ann is driving back to Boston to visit family. Some of my readers may recall that Ann's tradition with her parents in the past would be to let them know when she crossed through each State line on her car trip. Unfortunately Ann's dad passed away in October of 2009, and Ann's mom goes to bed at an earlier hour, so Ann can no longer keep this tradition alive with them. I am sure this saddens Ann because in just two short years her immediate family has decreased in size. When Ann drove to Boston a few months ago, she landed up letting me know when she made it through MD, DE, NJ, NY, CT, and MA. I naturally was touched by this gesture, because I felt like she was sharing a family tradition with me, which indirectly told me how she felt about me. Today, the tradition continues. I have heard from Ann through MD, DE, NJ, NY, and CT. I am awaiting the MA email update.

I would like to end tonight's posting with two messages. The first message is from my mom. As some of you know, my parents are on an European cruise. My mom wrote, "Tonight as I was standing on my deck saying goodbye to Stockholm, a beautiful city, I was feeling chilly but within a few minutes I saw the sun up in the sky with its brilliant rays pointing right at me. What does that tell you? I felt its comfort right away and it warmed me up from head to toe. I didn't need a sweater as I was immersed in its warm embrace. Despite the winds that began to build up, I remained in my comfort zone. It made me think that communication with Mattie is still possible but perhaps on an existential plane that has a frequency that must be carefully calibrated in order to be appreciated."

The second message is from my friend, Charlie. Charlie wrote, "What an appropriate picture as I woke to rain this morning. And what an interesting story you told about the umbrella for both you and Mattie. I agree that the comment was not well thought out; you were looking forward to trying out your new umbrella but if her wish had happened you would never have needed it. I don't think she truly meant that; I suspect it might even have been one of her "catchphrases" but in any case, none of us has a life of only sunny days; it is the rain in our lives as much as the sun that helps us to grow into the people we are meant to be. It is the rainy days that make the sunny ones more precious. I suspect that part of the reason why you have such a hard time right now with vacations and things which bring you joy is that you feel guilt at doing pleasant things while you are grieving Mattie. If sadness would bring him back, I would tell you to wallow in your grief, so he could return. Unfortunately, it doesn't work that way. Grief is an emotion filled with regrets, those things you did or did not do. Even though it is tough you have to go on living and doing or at the end you have far more to regret and grieve than you ever thought possible. Even though it's hard work, go away on vacation, connect with Peter and strengthen your relationship; communicate with friends and family or these "undone" things will become tomorrow's regrets. Today as I practice I send you my strength and resolution to work through all the difficult things because without them growth is not possible. I hold you gently in my thoughts."

August 12, 2010

Thursday, August 12, 2010

Thursday, August 12, 2010

Tonight's picture was taken in August of 2007. We took Mattie for a walk on Roosevelt Island, Washington, DC, while it was raining. Mattie loved the rain, and there was something very peaceful about walking in the rain. Mainly because few people were on the Island during that time, and we enjoyed hearing the sound of the rain hitting the trees and river. I also think that Mattie was looking forward to a rainy day, because he wanted a chance to use his new Lightning McQueen umbrella. When Mattie and I bought this umbrella together, I shared with him the story of when my mom bought me my first umbrella. I will never forget the saleperson's comment to me. I had to be around Mattie's age, and her comment was, 'I wish you only sunny days.' In theory that was a nice comment, but actually it was mean spirited in a way, because here I was a little girl excited to use an umbrella of my own, and she basically wished me NO rain. Mattie found this story equally troubling as I did! So when Mattie bought his umbrella, my comment to him was, 'may your umbrella always keep you dry on life's rainy days!'

Poem of the day: Missing by Charlie Brown

Even more than what they take
Children give us love
They are our life's blessing
Sent from up above
When you lose your child
Your arms are empty and cold
It is hard to think about never
Having a child to hug and hold
So on top of the grief and sadness
I miss his words of care
And hearing that I'm wanted
Now those times are rare
Feelings are important
And hugs and kisses too
So if you care about me
I need to hear it from you
It doesn't have to be a lot
Nothing very much
Just an arm around a shoulder
A hug, a kiss, a touch
These things are so important
And what we grievers need
Is for you to keep connecting
And watering friendships' seed

Charlie's poem, Missing, is very fitting for today. I started off the day in a rather grey mood, not unlike the weather. DC had terrible storms this morning, and when I heard the thunder and lightning, I did not want to get out of bed. Taking a vacation is a hard concept for me, which most likely explains why Peter and I rarely venture away from home. My lifetime friend, Karen, emailed me last night and asked me whether I thought I was allowed to be happy and to enjoy a vacation? It was a good question because it gets to the heart of the problem. Logically, the answer is 'sure,' we deserve a vacation and to be happy together, but emotionally I would not give the same response.

Peter and I chatted the whole car trip to the beach. While in the car, Ann called me periodically along the way, because she knows leaving home is challenging for me. We made two stops along our journey. One stop was at a local farmer's stand and the second stop was for lunch. At lunch, Peter was chatting with me, and I am not sure what he said, but out came the tears. He joked with me, because he wanted to know if there was a key word that triggered these tears. Since I usually land up crying at lunch time with him. Naturally there is NO key word. My emotions are not that simple. This vacation is very important for Peter, because unlike myself, he doesn't have the time to heal and to focus upon his thoughts and emotions since he works full time. So I realize how much this week means to him and to us.

I am trying to pull myself together since I still feel ill, have a migraine that just won't go away, and I have developed a very unhealthy sleeping pattern. Each night I wake up at 3am, and then find that I am unable to get back to sleep. It is my hope that I can break this very toxic cycle. When we arrived today at Ellen's house, Peter and I went for a walk in the area. Mind you it was hot out, but I really needed the fresh air. Peter was a real sport, and managed walking around with me. Later in the afternoon, Ellen and Charlotte returned home and we sat and chatted for a while before dinner. Charlotte told us about her drama camp and the performance she will be in tomorrrow. Charlotte asked us tonight if we would consider going to her play. In my mind Mattie will always be 7, however, when I see Charlotte, I see that she is no longer the seven year old that I remember. She is growing, maturing, and discovering herself. Part of me can't help but wonder what would Mattie have been like now. Charlotte is an excellent conversationalist, and we talked for quite some time about all sorts of things and about her upcoming trip on Saturday to the Grand Canyon.

This evening, Charlotte picked the restaurant we had dinner at. She selected a restaurant right on the water, sitting outside. It was a wonderful view and we all had a good time together. Peter and I both agreed that Mattie would have wanted to be here on this adventure and with his friend, Charlotte. But some things were not meant to be.

I received messages from Charlie and Nancy today letting me know how much they liked what I did to Abbie's room yesterday. That brought a smile to my face. When Nancy writes to me, she signs off her e-mails as "much love always and in all ways." I told Nancy, I never heard this line before until I saw some of the letters Ann had written to her parents over the years. Ann has created many wonderful photo albums for her parents that highlight their lives together. Many months ago, Mary and I were revisiting these albums together, and as I was reading Ann's letter to Mary, I was very touched by the line "love always and in all ways." Actually when reading it to Mary, I landed up crying, because I couldn't think of a more loving salutation than this! When Nancy began signing her emails to me with this deeply touching salutation, I paused in my tracks. I am sure I wouldn't have even noticed Ann's or Nancy's line prior to Mattie's death,  but now that a great love in my life is gone, I take great notice to words of love and devotion. I feel honored to receive this written gift of love, and to know that I mean something quite special to my friend.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "First, I have to say that I never would have guessed what you were planning to put on the side of that bookcase and that I am very impressed by your creativeness. It looks like something created by the designers on HGTV; perhaps that is your next career move? I am so glad you kept busy yesterday and that you had lots of people who care about you to connect with. Connections with those we care about and who care about us are what make us who we are. There have been many studies on social interaction and physical connection and they all show that without these things people become depressed, ill and even die before their time. And yet, many of us go through our day without making any of these connections at all; is it any wonder our society has so many problems? I am so glad that Mary, Ann's mom, finally had her "visit" from her son. Like Mary, I believe Mattie will come to you in time; in the meantime he will probably connect via the other people in your life so stay tuned for messages. I hope you have good weather at the beach and that you are able to get out and enjoy the water and relax and heal. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "BRAVO! BRAVO! Abbie's room, at least the parts you showed are awesome. Like Charlie, I couldn't imagine how you would transform the clamp into a beautiful holder for her precious animals. It is fantastic! You used so much creativity and put a bit of her friend, Mattie, in her room for safe keeping. I am glad that you were part of this project. You have so much to give, especially to 'little people' and I know this is a big void for you with Mattie's death. You accomplished two things: helping Ann and Abigail and got to go through the stage of changing a growing child's room. I believe Mattie likes his friend's room too. Mary is so much a part of your life too. What a wonderful gift yesterday! Somehow when grieving so deeply we can't believe that anything will feel right again. I think we've spoken about this earlier, yet, want to say again that once one door closes, another does open. You are gently letting some happier moments in and that, I think, is healing the cracks caused by Mattie's death. You will always see and wonder how Mattie would handle future stages of growth. He is and was your very special connection to the world. It is interesting how we can see things differently. I'm speaking of your comments regarding Mattie's eyes in today's picture. At first, all I could see was his missing tooth and then you talked about his eyes. They are not as bright, but, he did seem glad about losing his tooth, in spite of his pain. How special! Your love and gentle way certainly transformed into your courageous Mattie. We are expecting rain today and I hope you will not have the same weather for your trip to Bethany Beach. May this trip bring you greater healing and peace. May you keep finding the happiness that still exists for Peter and you. With much love always and in all ways."

August 11, 2010

Wednesday, August 11, 2010

Wednesday, August 11, 2010

Tonight's picture was taken in August of 2009. In this picture, you can see that Mattie was not well. I can now see it in his eyes. Not sure I registered it back then, because I was too sleep deprived and functioning on auto pilot. Mattie and I have the same eyes, and through our eyes you can tell a lot about us. You will notice that Mattie was holding a little box in this photograph. This little box was his tooth fairy box. We picked out this box together on one of our trips to Deerfield Beach, Fl. The box now sits in my nightstand drawer, with the tooth in it. It was the last tooth Mattie lost, and things that are important to me, I keep in my nightstand drawer. I occasionally pull the tooth out and look at it, and I guess I held it too hard one day, and the tooth split in half.  

Poem of the day: Getting through by Charlie Brown

Sometimes it's the little things
The tears, the laughter memory brings
The little things that make my day
And give me hope I'll find my way.
Today for a while I was myself
I put my grief up on a shelf
With no fear that it would go away
I knew it would be back today.
I still miss you with all my heart
And inside you'll always be a part
Of everything I feel and do
I always will be close to you.

Today was a very busy day, filled with finishing up Abbie's redecoration project, and connecting with people. I am constantly amazed with my level of social interactions just being in Ann's neighborhood. I am used to city living where people basically keep to themselves. But when visiting Ann, I see her neighbors and friends on a regular basis. Some days the stark contrast between our lives does hit me.

This morning I went with Ann to visit her mom, Mary. I haven't seen Mary in quite some time because I have been quite ill. Mary was worried about me, and I wanted to visit her before going away tomorrow. As soon as Mary saw me, she said that she had something she has been wanting to tell me since Sunday. So I dragged a chair over and told her I was listening. Mary's son died from cancer about two and a half years ago. However, she has never had a dream about him or felt his presence since he died. A reality I understand all too well, and one that I find disconcerting. However, on Sunday, Mary said she had a dream about her son and he actually touched her arm. She demonstrated on my arm, how he touched her. You could tell this encounter brought her peace and happiness. Yes I said happiness, a word neither Mary or I use in our vocabulary much anymore. I told her I was touched by her story and touched that she wanted to share it with me. Mary took this one step further and told me that Mattie will come to me one day too, for that she was certain. I found that a very beautiful comment for her to make, because on some level she gets me, and she gets my sadness and my feelings of directionless. I also think expressing such concern for me, is an act of love, and it registered in my mind and heart today.

Ann and I had a delightful lunch today with Tanja and Katharina. It was actually Katharina's idea to take me to lunch to celebrate my birthday, and I know she has been excited to give me the special gift she picked out for me. When we arrived at the restaurant, I could see Katharina's enthusiasm. She had given me a hint a week ago about the gift she got me, she told me it was fuzzy and purple. Well indeed it is! It is a beautiful and cozy fleece type blanket. The perfect gift for me since I am always cold! Tanja also gave me two lovely gifts, which were both sentimental in nature. One was a butterfly umbrella, which will always remind me of Mattie, and the other gift was a locket type of keychain. Inside the locket were tiny trinkets all very symbolic of my life with Mattie. For example, one of the trinkets was of a little boy, with a diamond in it (Mattie's birthstone), and another was a lady bug! Each trinket was so meaningful and captured Mattie's spirit and energy. Needless to say, I attached the keyring to my purse and there it will remain. I am certainly touched that Katharina and her mom would want to celebrate my birthday, but I am more moved by the fact that in giving me gifts they thought about Mattie and the things that were important to us and our relationship.

Certainly we can tell if others love us by their actions, but sometimes words are also important, and are needed to be heard. When I lost Mattie in my life, please keep in mind that I also lost a great source of love. Children are wonderful at telling you they love you, at hugging you, kissing you, and making you feel special. Well this source of love went out of my life on September 8, 2009, and with that I also lost an important component that makes me human. The part that needs love and to viewed as special in the eyes of another (naturally I consider myself fortunate to have Peter, and am not minimizing this connection, but I think Peter would also agree that a great source of love in our lives is now gone). What I am trying to say is that now more than ever I do need to hear words, I need people to be open about how they feel about me, and I realize this may not be a form of communication everyone is comfortable with, but it is an important form of support for me. After lunch, Ann reminded me that Tanja said at lunch, that "this was a special lunch for a special person." When Tanja said the comment, I did not internalize it, but upon reflection, I am absorbing it. I thank those who are around me who have the courage to tell me how they feel.

Later this afternoon, the encounters just continued. While running a chore with Ann, I bumped into a colleague of mine, Camille. I hadn't seen Camille in a while, and we had a few minutes to catch up, which was lovely. As I was driving out of Ann's neighborhood tonight, I recognized someone out of the corner of my eye. It was Marisa. Marisa was one of Mattie's great babysitters, and has been our bake sale coordinator two years in a row at the Walk. It was a nice way to end the day, and I met the cute little girl she was watching today.

So as I promised, I want to share two projects I have been working on at Ann's house. The first project involved finding a way to hang a mesh basket for toys from a piece of furniture. When I discussed this project with people at Home Depot, they were thoroughly confused and told me what I wanted to do wasn't possible. But when there is a will, there is a way. I knew I needed to find a piece of hardware that could attach to furniture without damaging the wood with holes.

So before entering Home Depot, I went onto their website and looked at every tool possible. I then saw this heavy duty bar clamp, printed out a copy of it, and told the salesperson to take me to the aisle in the store where I could find the clamp in this picture. Mind you several people in the store told me this idea would never work!

As you look at this clamp, it is certainly functional, but NOT very attractive. So I had two jobs to perform.First I had to make it functional to hold a heavy mesh basket filled with stuffed animals, but second, I then had to make it attactive for a little girl's room! I don't know about you, but when I look at this clamp, attractive doesn't jump out at me!
So after giving this great thought, I decided to first spray paint this clamp. I painted it a bright and happy blue color, to match some of the tones in Abbie's room. It certainly looked better painted, but I wasn't quite happy with it yet. So today, I went to the craft store, and bought silk English Ivy leaves, wrapped it around the clamp and attached a fake bird to the end of the arm. I thought it was absolutely whimsical, and being so in tune with nature now, I wanted to bring that into Abbie's room.

When Abbie saw the finished product tonight, her reaction was "COOL!" I realize this decoration may not work for everyone, but Abbie has a spirit about her, which I had a feeling would appreciate this, and I was right!

The second project fell more on Ann than I, because Abbie wanted to create a reading nook in her bedroom. Ann has been working on finding the right pillows and things for this special corner in Abbie's room. However, as the corner was filling up, something had to be done about the curtains which were flowing and getting tangled up in the pillows. So today, I found gingham ribbon to match other things in Abbie's room, and made bows for the curtains. What you can't see is that I hot glued butterflies and flowers to the ribbons. Any case, it is safe to say that this room has been transformed, and it is charming, and a place that is just inviting to be in. After being sick for so many days, it was nice to be able to participate in this project and be creative and a part of something.

Peter and I leave tomorrow morning for Bethany Beach. So the next time you hear from me, it will be from another State and much different surroundings. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As I looked at the picture of Mattie, I thought it was so emblematic of your relationship. He was clearly developing an independent streak and yet he was leaning on you and you had your hand protectively around him. And so it was all the time you cared for him; you could not have done a better job. As for the memories of Mattie; well, he is a part of so many of us now, there are all sorts of things that bring him immediately to mind. Part of immortality is being remembered and I don't think he will be forgotten by any of us who know you and/or Peter or who were touched by his fight or the blog in some way. I can't wait to see the photos of what you are creating for Abbie's room; I've tried to picture what you might be hanging and how that might work but my imagination doesn't work that way. I am sure that Toni is very anxious right now and I will be saying prayers and sending positive thoughts that all turns out well for Brandon. I hold you and Peter gently in my thoughts."

August 10, 2010

Tuesday, August 10, 2010

Tuesday, August 10, 2010 -- Mattie died 47 weeks ago today.

Tonight's picture was taken in March of 2005.  Mattie was almost three years old. We took him to a Bunnyland event at a local Maryland farm called Butler's Orchard. Mattie had a great time collecting Easter eggs and riding on tractors. Some of my readers are familiar with the photograph posted on this blog of Mattie holding a pumpkin. This was one of my favorite photos I ever took of Mattie, and it was taken on the same farm as tonight's picture!

Poem of the day: Redecorating by Charlie Brown

I can help you change your space
But in my own all must remain in place
For you are still growing, living there,
While my son is no longer living here.
Your space should showcase who you are
And in it you should be the star
But it's about who he was in our place
And so I'm in no hurry to redecorate
Maybe when the memories are safely inside
I can let those physical things abide
Inside a closet or out of sight
But as yet, that doesn't seem right
So here they'll stay reminding me of you
As if I really needed them to
And one day when I hurt less they'll go away
And I won't walk past them everyday.

It is yet another Tuesday! How on earth can that be? Today marks the 47th week Mattie has been gone from our lives. Yesterday, I had the opportunity to chat back and forth by e-mail with a parent of one of Mattie's kindergarten friends. In the e-mail this mom told me how she will never look at school registration day the same way anymore. Last year, Mattie's school had its orientation and registration day on September 8, 2009, the day Mattie died. I can only imagine how that news hit the members of the school community who are our friends and loyal supporters. I was actually very touched to receive this lovely e-mail. On one hand I am saddened that for so many close to us, the beginning of school may have negative connotations, however, on the other hand, I know that when others are reflecting upon this day, in essence Mattie's memory is captured and remembered. Which for parents who are grieving, this is a vital gift to hear about.

As I am helping Ann reorganize Abbie's bedroom this week, I decided to venture to Home Depot, because we had a couple of projects to take on such as hanging mirrors and baskets in the room. Before I even entered the store, I had some thoughts in mind about the products I needed to buy. However, for the fun of it, I walked into the store to see if someone could help me brainstorm the best way to hang something from a piece a furniture, without damaging the wood with nails and screws. Well I went through four sales people and each one told me what I was asking to create was impossible. These kind of challenges I absolutely love, because nothing like this is impossible, if you think through a creative solution. I told them what I wanted to use, and they all laughed at me. Needless to say, I bought the hardware I envisioned, painted it today, and will see if I can get it to work in Abbie's room. If I get it to work, I will take a picture of it, so you can understand what gave me my jollies today. I have to celebrate the small things some days.

I had lunch with Ann today, which is not atypical for us. I am very fortunate to have a friend who is willing to integrate me into her life and the life of her family. In a time where I do feel lost, having her steadfast support means a lot to me. However, because Ann has seen the good, the bad, and the ugly with me, our conversations can be complicated. But that was what was different about today. Today, at lunch we talked about issues that are more "normal," or what I perceive as normal issues we all face in life. For that moment in time, I forgot temporarily that today was Tuesday and the usual heaviness that this day provides. Instead during that time, I felt like Vicki, the person. A person I no longer see or feel I am anymore. Certainly Ann and I talk about all sorts of things on a given day, but as I reflect back on today, this lunch stands out to me. The difference was within me, but like so many emotions I experience, this feeling is fleeting.

When I got home tonight, I returned a phone call to Brandon's mom, Toni. Brandon was Mattie's big buddy at the Hospital. I know my blog readers have followed Brandon's treatment over these last two years. Brandon was an integral part of Mattie's treatment life, and therefore while reporting on Mattie you also heard a lot about Brandon. Brandon was diagnosed with Lymphoma in August of 2008. Brandon went through 6 months of intense treatments and has been with No Evidence of Disease for almost a year and a half. However, Brandon returned for a check up today and some things need follow up for clarification and answers. Brandon is scheduled to go back to the hospital next Tuesday for further testing. To all my Mattie supporters out there, please keep Brandon in your thoughts and prayers. The waiting and wondering for over a week is down right painful for a family, and I know your positive energy is needed right now.

I have been e-mailing back and forth my friend and colleague, Nancy. Nancy asked me an interesting question yesterday. As some of you may recall, my commitment was to write the blog each night for a year after Mattie's death. That would mean that in less than a month, I could stop writing the blog. But can I? Nancy wanted to know how I felt about this? Her question has been swirling around in my mind, and I frankly do not know the response yet. Honestly!  

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Another Tuesday is nearly gone. Just a note to let you know I'm thinking of you...this Tuesday and every day."

The second message is from my friend, Charlie. Charlie wrote, "I love that picture of Mattie and I don't think it is one I've seen before. To me it is symbolic of your relationship with him; he was so connected to you that even while next to you, the need for physical connection was very strong. It speaks volumes for your love for each other. You remained his "touchstone" to the end and his faith in you was not misplaced. I can appreciate your love of gardening and growing things; having spent my childhood in NYC, I appreciate having the space to grow flowers, vegetables and herbs and watch the butterflies, birds and others enjoy the gardens as much as I do. It really is a wonderful, calming connection to all living things. I am glad you continue to have connection to Tanja, Alison, Toni and others who were originally part of your life through Mattie; I think their presence helps enrich and connect you to both who you were and who you want to be. I hold you gently in my thoughts."

August 9, 2010

Monday, August 9, 2010

Monday, August 9, 2010

Tonight's picture was taken in August of 2009. The ironic part about this picture is that I looked sicker in it than Mattie did. What fascinates me about this picture however, was despite Mattie's terminal status, he was still playful. He took his plastic claw, and just loved to capture me in some way either by grabbing my hands or clothes. You will notice in the backdrop of the picture, there was a photograph taped to the wall. This photo was sent to Linda, Mattie's childlife specialist, from the gang at the Lego store. The Lego folks snapped a picture of Mattie with the Lego Brick Masters at the store, and when they found out he was readmitted to the Hospital right after the Lego event, they e-mailed the picture to Linda. Mattie loved it, and up it went in his room. In fact, each Hospital visit always entailed redecorating and displaying Mattie's art work, as well as art work from his friends and classmates who were thinking of him.

Poem of the day: Anniversaries by Charlie Brown

Anniversaries should be happy
But right now all of ours are sad
Reminders of unhappy news
No wonder we feel bad
We've made it to this point
Eleven months since you left
Whether this was 1 or ten
I suspect I would still be bereft
I still feel your pain and anguish
Whenever I close my eyes
I don't think I will ever understand
Why you had to die
Going on without you
Just seems so unfair
Life in our house is different
The emptiness hard to bear
Friends say have faith
We will see each other some day
But right now that time
Seems just too far away.

I finally ventured out of the house today. On my way to my car this morning, I bumped into Maria. Maria is one of the women who runs our leasing office in our complex. We have known Maria for 15 years, and she watched Mattie grow up in our complex, and naturally over the years she has become a friend to us. She is a daily blog follower as well, so when she saw me headed to my car, she came to find out how I was feeling. Which was very special. We chatted about my garden, which others can easily see from their windows. Peter and I are growing so much basil this year, that I am welcoming neighbors to come and snip some, root it, and grow it in their gardens. Gardening has become very therapeutic for Peter and I, and I suppose when you have experienced death, it is important to reinvest in life in some way. Cultivating green things is the perfect symbol of life. Maria and I then chatted about where I was going for the day. I told her I was headed to Ann's house to help her reorganize her daughter's room. Astutely Maria asked if I was okay with this. As I told Maria, I am fine with this project. I am not sure why, but most likely because over this year I have gotten to know Ann's children fairly well, we do lots of things together, so in a way this activity seems more natural than unnatural.

I naturally decorated Mattie's room when he was a baby and over time it morphed into different things as he grew into a toddler and a little boy. But we never had the chance to really change his room together. He just never lived long enough for us to take on such a project. I never thought such a reality would be possible, and certainly when I picked out his crib, his blanket, and all his things, I did not realize how finite our time would be together. In fact, I still get stymied over that notion! I am in no way equating what I am doing with Abigail to what I would have done with Mattie, other than the simple fact that it is nice of Ann and Abbie to include me in this project, and in its own right this is a project about creating and transforming (the underlying theme in my life at the moment).

I had the wonderful opportunity to chat back and forth by text messaging today with Brandon's mom, Toni. As many of you know, Brandon was Mattie's big buddy in the Hospital. Brandon is approaching his second year anniversary of being No Evidence of Disease, and he is headed to the Hospital tomorrow for his 6 month check up. I can only imagine the level of stress in Toni's mind as these check up days approach. As I told her today, neither she or I will ever be normal again. I no longer live with these scan days on my calendar, but I remember the pain all too well, and though I won't be with Toni and Brandon tomorrow, my mind and heart sit with them in the Lombardi Clinic.

I went out to lunch today with Ann and Alison. Many of my faithful readers know Alison was our Team Mattie Communications Coordinator. Alison's son, Paul, and Mattie were in the same kindergarten class together. It was nice to chat over lunch, exchange stories, and feelings. Alison and I do not see each other as often as we once did, but she is a very sensitive individual and does understand when things could be bothering me or weighing on my mind.

After lunch, I had the opportunity to pick up Ann's girls from camp, along with one of their friends. We all had a fun time chatting in the car, talked about books, their camp, and their weekend adventures. When I got to Ann's house, her phone rang, and it was Tanja. It has become funny now, that many of Ann's friends and neighbors have become a part of my world. Ironic since I live at least 20 miles away from where Ann lives. Tanja and I chatted about a project she is working on, and while we were chatting, I could hear my 10 year old buddy, Katharina (Tanja's daughter), come on the line and started to chat with me. Katharina has wanted to give me something for my birthday for over a week now. She has given me lots of hints, but I just can't seem to guess exactly what the item is. I will be seeing her on Wednesday and the surprise will be revealed. The hint is it is fuzzy and purple!

Later in the afternoon, I spent some time in Ann's garden which despite the incredible heat is really thriving and looking beautiful! While outside, I occasionally would pop back inside to see how her son, Michael was doing. Michael showed me his chocolate bar that he made at Hershey Park this weekend, and even wanted me to try some of the chocolate he likes. After I tasted it, he wanted to know my reaction! Nothing like bonding over chocolate!

When I got home tonight, Peter and I had dinner outside. His comment to me was basically, "only for you" would he sit outside in the heat. Understand that it is super humid and over 100 degrees today in DC. I nonetheless absolutely love it! When it is warm, it brings me outside, I can see greenery, and I can see people. When it is cold, it is much easier for me to retreat.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Thank you for the picture of Mattie and the reminder of just how strong and determined your son was. He got those strengths from you and Peter and will be those characteristics that will get you through this period when it all seems just too much to bear. I hear the same concerns about illness from others who are grieving; some say there is a general feeling of unwell most of the time and that an actual illness is almost a relief. Others feel like they will never have the same sense of wellness that they had before the mourning period began. Most people seem to feel physically more "able" at about the two year point and while hearing this could go on another year, it also means that there is usually an end to it. I loved hearing about Debbie's dream and you are probably wondering why others dream of Mattie and you don't. A friend of mine who is a Rabbi told me that if new mourners dreamed of their loved ones, they would have no reason to get out of bed so G-d in his wisdom sends the messages to others. This way the mourner knows that the spirit is there communicating but you have to connect to others to hear it. Once someone commits to living again, dreams often come directly to them. So today as I practice I will send you my strength to help you keep walking until you turn that corner and know that you are ready to both dream and live. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I LOVED MATTIE'S PICTURE FROM LAST NIGHT!!!!!!!!!! It showed pure joy and freedom, although, he wasn't free in body, he was in spirit. No one and nothing can take that away from him and you. I wasn't surprised to read that you slept better with his blanket. You had the perfect access to Mattie this way. Be gentle with yourself regarding a message from Mattie within your dreams. Mattie comes to you in conscious life as that is where you need to hold him. What a lovely share from Debbie. Your grief is so fresh that this channel may be closed to remembered dreams, yet, I believe it will happen. I enjoyed Charlie's poem too. Another image of Mattie is added now, Mattie Moon and Captain Mattie. I just had an image of Mighty Mouse, an old cartoon. His message was: Here he comes to save the day! Your Mighty Mattie did save many days in many ways. Glad that you could get in the garden for a little while yesterday. Although, I'm not much for digging in the soil, I do believe it a great way to anchor oneself especially when feeling disconnected from the earth and daily activities."

August 8, 2010

Sunday, August 8, 2010

Sunday, August 8, 2010

Tonight's picture was taken in February of 2009! This picture captures Mattie! Mattie was a leader and a take charge kind of guy. Anna, Mattie's physical therapist, and I were trying to motivate him to do his exercises. But you can see in the end who landed up working and doing the therapy.... Anna and I! You just have to laugh over this picture. Mattie eventually did his therapy, but we all had to prove ourselves in his eyes first. Fortunately Anna is an incredibly patient, loving, and competent therapist, who understood Mattie's physical and emotional needs. I do believe that if Mattie's case hadn't become terminal, Anna would have gotten Mattie to walk in some shape or form again. She was determined and always helped to normalize things for me, which I needed greatly!

Poem of the day: Captain Mattie by Charlie Brown

Captain Mattie, our little boy
How much we wanted to see
You have the fun and unbridled joy
Of having one dream come to be
But alas we all waited too long
And so it was not to be
Death had begun his sad song
And you were preparing to leave
Every time I see that picture
I am drawn back to that place
Where you were just a little boy
And a race was just a race.

Today marks the 11th month that Mattie has been gone from our lives. Some how this week, was the big week of anniversaries. August 5, 2009, was the day Mattie's situation became terminal, August 6, 2008, was the day we learned that Mattie's cancer had metastatized to other bones, and now August 8, 2010, marks the 11th month of Mattie's death. Seems like a lot to absorb in one week not to mention a lot to absorb in a lifetime.

I am happy to report that I have turned a corner and have re-entered the land of the living. The beauty of antibiotics! I was quite ill yesterday and my cough was so severe, that Peter wanted to take me to the emergency room. From coughing intensely for an entire day, I am all aches and pains today. Every muscle hurts and my ribs are tender. None the less, it is a good feeling to be able to move out of bed and to even sit outside today. In many ways, I feel that Mattie's cancer and death have aged me, and I no longer feel like my current age. I seem to be much more fragile these days and having back to back or recurrent illnesses seem to just take a great deal out of me not only physically but psychologically. When I am completely zapped of energy my greatest fear is that I will never be able to heal and be normal again. Certainly not very rational, but I view this as a direct effect of surviving cancer.

I went to bed last night with a fever and chills. Because I couldn't get comfortable, and was in search of extra pillows in our home. I went right to Mattie's bed and took his pillows and even pulled a blanket from his room to use. The blanket I pulled was his Speed Racer one, a blanket I purchased for him the day before he started chemotherapy. It is a fleece type of blanket, and I wanted him to have something soft and cozy. Because the Hospital was frigid, and I was always cold, Mattie and I shared that blanket many a day and night. I haven't slept well in about two weeks, yet last night, though somewhat restless, I actually slept. It was a real first! I attribute this peace to the power of Mattie's blanket! I am sure that may not make any sense, but nothing in grief makes sense sometimes. It is simply a feeling.

I managed to get out of bed today, and caught up on some paperwork I have had to do, and even spent some time out in our garden. Clipping, weeding, and reshaping flowers. It was nice to be able to do the simple things today, because based on yesterday, I wasn't sure I was even going to be able to go on our beach trip on Thursday.

I received a beautiful e-mail yesterday from Mattie's art teacher, Debbie. Many of you may recall that Mattie created Mr. Sun in Debbie's studio. Debbie wanted me to know the following: "Three nights ago I had a vivid dream about Mattie. We were in an enormous house that I could not recognize. There was no furniture. Mattie was zooming around the room and holding his arms straight out to his sides and flapping them like wings. He was smiling and laughing. I could not hear any sound but I could see how free and happy he is. He came close to me and hugged me more than once. Each time I told him to go to you. You were there. I hope he will soon visit you in such a dream if he has not already. I feel great comfort in dreams. I wish that comfort to be felt by you." Debbie is correct, I have not had a dream of Mattie coming to me, much less even a dream suggesting that he is okay. So when I received a message like this, in a way it brings a smile to my face. Perhaps I am just cut off, too hurt, and too overwhelmed to be able to receive such a message from Mattie right now. But I hope Debbie's dream is in some way is Mattie's way of communicating to me and to those he loves.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "That picture of Mattie as Captain Mattie reminds me of how so many people moved quickly to try to give Mattie his dream of being a ship's captain and how disappointed we all were on his behalf when he was unable to take advantage of any of the offers. Although it did not work out, those efforts stand as a testament to the caring nature of the majority of people who will jump to do a good turn for someone else who they don't even know. Those are the moments that give me hope for all of us. Our relationships with our bodies are interesting and sometimes difficult to comprehend for although we assume that our minds and bodies are intimately connected, those links can become fragile or severed. Physical trauma often lies at the base of this but it can be mental or emotional trauma and I would say that what you went through for over a year with Mattie's diagnosis and treatment qualifies. In a sense you have to reintroduce your mind to your body and reconnect those links which have grown rusty from disuse. Another issue is that the body can hold emotional memories that the mind has forgotten. In order to mend you have to have all the pieces available to you. Go slowly, be patient, but since you are not feeling well and are disinclined to be out socially right now, this might be a good time to start. One place to start could be the tensing and relaxing of your muscles (progressive relaxation) starting at your feet and working up to your head. if you ry this and this causes sadness or tears, or even laughter, don't worry as it means that the body is holding the memories for your mind and this crossover of emotions between the mind and the body often happen in the process of reconnection. Regardless of what you choose to do today, I hope you begin to heal from your illness. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "Today marks 11 months since Mattie died and is the 2nd anniversary of my Mom's death so we are eternally connected. I agree with Charlie that you both need a way to strengthen your immune systems. I understand how hard it is to find the rhythm again when your heart is broken. Finding the path back to life before a trauma requires great fortitude. This is often difficult when emotions are so compromised. I know that you are due to go away again this Thursday and hope that you will be able to relax this time. Just a thought, to create a visual for yourself allowing a peaceful and strengthening visit. Possibly, you can focus on the water and the calm of the retreat as you awake these next few mornings. Allow yourself to picture the blue of the water and a clearing sky. Maybe the sun is shining warmly on your face and see yourselves walking along the beach feeling the sand between your toes. I send you healing wishes and pray for your power and energy to return soon."