MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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

July 17, 2010

Saturday, July 17, 2010

Saturday, July 17, 2010

Tonight's picture was taken in May of 2005. Mattie was three years old and standing in his frog sandbox, on our deck. Mattie grew to love his sandbox and could spend hours in it. He would bring toys from inside, and throw them in the sand and create elaborate play schemes. He especially loved putting his hotwheels cars in the sand, and then when he was done playing, he would actually then move the cars into a bowl of water, and literally gave all the cars a bath.

I wanted to post a sandbox picture tonight because I have a sandbox story for you. Mattie's sandbox no longer sits on our deck. It sits outside the green door you see in the picture. Basically it sits right in front of our deck. We moved it out there because Speedy Red is taking up a lot of real estate and there was NO room for the sandbox. Peter has recently told me that there are children in our complex who play with Mattie's sandbox. When he told me this, I wasn't happy. I wasn't happy because to me this was Mattie's and no one should be touching it, because just like all his other things, the intact sandbox preserves his memory. Any case, today, as Peter and I were getting ready to leave our home, Peter alerted me that there was a little girl with her mom outside, and he took off the roof of the sandbox so the little girl could play in the sand and with Mattie's toys. When he told me this, I said nothing, but when I opened the door, I could clearly see the girl was playing and having a wonderful time in the box. She had set up ramps with the wood pieces Mattie had in there, and was racing his hotwheels cars all along the ramps (similarly to how Mattie played). I could clearly see the mother was appreciative that Peter allowed her daughter to play with the sandbox, so I basically took in the sight, but did not say much. For me this is progress, because months ago, I probably would have been very upset by this whole scene.


Poem of the day: Small Things by Charlie Brown

There are moments
When the day is done
I can fool myself into believing
You're still here my son
I walk inside and
What do I see
Your shoes, your toys
Waiting for me
Just as you left them
Waiting for you
To pick them up
And start building anew
And then I realize
You're not coming home
And I have to face
My grief alone
Please understand
As I pick up each thing
And put them away
To your memory I cling
While some of your things
May be out of sight
Your laughter and love
Are with me each night
So unlike your memories
I put things away
For all I can carry
Is your memory today.


This morning, Peter and I met Bill O'Leary. Bill is a full time photographer with The Washington Post. Bill was very interested in Mattie's story and was fascinated by all of Mattie's artistic creations from Mr. Sun, his clay sculptures, Dr. Crazyhair, Mattie's Lego Taxi (that he made the night the Lego store opened just for him) and the list goes on! Bill wanted to see Mattie's room, which is by far the worst and most cluttered room in our home. Mainly because I have piled things of Mattie's in his room. Bill had no visible reaction to this chaos, but only continued to be interested by everything we showed him. I still have Mattie's IV pole, and we had to explain to Bill why Mattie needed an IV and why either Peter or I slept with Mattie at all times. As Peter and I reflected on our life today, we told Bill that we weren't only battling cancer, but Mattie's cancer treatments left him physically disabled. So that was a great deal for a six year old to have to contend with, and naturally it was beyond overwhelming for us. Why do I still keep Mattie's IV pole and commode? I am not sure, but I know I am not ready to give them away. They are symbols to me of what we survived. Almost like our medals of honor. They symbolize how life altering Mattie's cancer was, and frankly right now, I am not ready to move on and dismiss this. So instead, these objects sit in Mattie's room, along with many other things. Bill must have taken hundreds of pictures today of us, Mattie, Mattie's creations, the Foundation's symbol, Foundation merchandise, and even photographed me while I was talking. Lord knows what that actually looks like on film! Bill worked with us for about 45 minutes, and he was delightful to talk with. Unfortunately Rick (The Washington Post reporter covering our story) contacted us today, to let us know that it WON'T be running in tomorrow's paper. There wasn't enough space. So I will keep you posted on the next scheduled date.

Later on today, we drove to Mattie's school in order to attach the acorn shaped birdhouse that my in-laws sent us for our anniversary onto Mattie's tree. At the entrance to the campus, we saw Bob Weiman (the head of the lower school, or better known on this blog as "The Magic Man") and his family. Bob came over to chat with us and told us that he just took his kids to the Lego exhibit at the National Building Museum. An exhibit Mattie would have absolutely loved. We showed Bob the birdhouse and told him our plans for the tree. Bob let me know that the tree looks great and is well taken care of. As we said our good-byes and headed for the tree, I realized immediately that this is another component of my life that I miss. I miss Mattie's school community and certainly interacting with Bob. Bob and I saw each other quite often while Mattie was sick, and his kindness and regard for Mattie will never be forgotten by us.

Mattie's tree looks beautiful. It looks young and strong, the perfect symbol of a young fallen hero. I was thrilled to see that the tree has a gator bag, an irrigation system, around the base of it. It is SO hot, that this young tree really does need water in order to continue to grow and flourish. Peter attached the acorn birdhouse to the tree and we snapped some pictures of the permanent plaque (which wasn't present on the day of the tree dedication ceremony), along with the tree and birdhouse.

The official tree dedication plaque.



















Mattie's tree, and in the center of the tree you can see a very subtle acorn shaped birdhouse.






















A close up of the acorn shaped birdhouse!


















Peter and I do not have a grave site to visit, since Mattie's ashes are home with us. But for us it is very symbolic to visit Mattie's tree. As I was looking at the playground, I remembered all the times Mattie ran around it, climbed various structures, played in the sandbox, and swang on the swings. In a way, I could hear the sounds and see the sights in my mind, yet when reality takes over, naturally all I see is a barren playground. I assure you if you think that having only memories left of one's child is easy, you are sorely mistaken.

I spent several hours this afternoon with Mary, Ann's mom. I showed Mary some of the photographs Ann sent me to print out for Mary, and Mary enjoyed hearing about their trip and also chatting about her own day. Mary made a few phone calls and even wanted to sit outside in this very hot weather. So we covered a lot of territory. Before Mary went to bed, one of her caregivers read a passage from the bible to her, since we all know that Mary is a very religious person. Tonight's passage was from the Book of Matthew. To make a long story short the premise of the scripture was if you believe in God hard enough, then all your troubles and ailments will be healed. Neither Mary or I said anything as this passage was being read, but we both clearly understood that NO amount of praying was going to help her son or my Mattie. What is interesting about this is, here before you stands two women, both of whom lost their sons. Yet Mary doesn't question God or her beliefs in God, whereas I do. I am not sure what explains our differences, but I am aware of them. I also know that one can't just believe in a higher power when things go right and correctly, one has to have faith even during times of trouble. I get that cognitively, but not emotionally yet.

This evening I heard from Toni, Brandon's mom. I then received several text messages from Brandon (Mattie's big buddy for the Hospital). Some of you may recall that it was Brandon's birthday this week. What he wanted to do for his birthday was to sky dive. I am happy to report that Brandon successfully jumped out of a plane today and he thought it was "cool." So I have officially said, that Sean Swarner now has competition, Brandon is on the scene! I was so happy that Toni and Brandon contacted us today to let us know about this successful birthday adventure! If you can survive cancer, you can survive anything! Brandon has proved that today. Brandon is another gift that Mattie has brought into our lives, and I am so happy that our families continue to reach out to each other.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Picking up toys and putting things away. Of course it is a big deal! It is an admission to yourself that Mattie will not return and ask you where something is. That's a huge step to take. I am glad you had the opportunity to sit with Tamara last night and talk about this and how you feel. Finding a way to incorporate some of Mattie's things in a way that is meaningful to you but allows you space to live on is important. This is not a "straight line" effort; you will try some things that work and others that don't work for you. Find ways to compromise between your heart and your head. With all that you were involved in yesterday you found the time to continue to do good deeds, to care for both Ann's garden and her mother. Both required attention of different sorts and you did such an amazing job with both. Most people would have left Mary sleeping and felt relief, but you brought her out of her hiding place to reconnect with Ann and those around her. Let those of us who can, reach out and help you to do the same. As I practice today I send you the energy to continue to navigate these treacherous places on the path. I hold you gently in my thoughts."

Friday, July 16, 2010

Friday, July 16, 2010

Tonight's picture was taken in July of 2006. We took Mattie on a nature walk, and he was fascinated by a tree that fell right in the middle of the pathway. He climbed up the tree, and it seemed like the perfect picture moment. I always had my camera with me at all times, because with Mattie I found many moments that I wanted to capture. I look back now at my insistence to carry a camera, and realize just how an important a decision this was. The name Matthew, translates to "a gift from God." Mattie was a gift, and like all gifts they sometimes can be taken away.

Poem of the day: The Two of Us by Charlie Brown


Yesterday was our anniversary
Hard to believe I know
This year has been a roller coaster
Full of highs and lows
Grief often divides those
Who most need each other
Sometimes husband and wife
Perhaps sister and brother
I am so glad you
Are here with me
And that you said
It's where you want to be
We were so happy
When two became three
But now we're back
To just you and me
We're still in love
And we share our grief
And the loss of the happiness
Cancer stole like a thief
For the only thing worse
Than grieving is to grieve alone
Because if you do
Grief turns your heart into stone
So although this anniversary
Wasn't happy I fear
Know that I love you
And I treasure you dear.

I woke up today and wanted to address some of Mattie's things in our living room and on our staircase. In our living room, are piles of Legos everywhere. Some are assembled Lego structures like a Victorian village and the Taj Mahal. Others were pieces of things that fell apart over the course of this year. So between tonight and today, I salvaged many of Mattie's structures and cleaned up the stray parts scattered around. In addition, since Mattie died, all his shoes have remained lined on our staircase. This is just where Mattie liked keeping his shoes when he was alive. He liked it because before walking out the door, he could just sit on the stairs, pick the shoes that he wanted to wear, and then put them on. All these months, I never had the heart to touch these shoes. Today, I picked up six pairs on shoes on our staircase, and moved them to Mattie's room. Seeing Mattie's shoes on the staircase always seemed to assure me that a child lived in our house. Moving them today, though that may not sound like a big deal, was indeed a big deal! It was the first physical thing I have done which acknowledges Mattie's absence from our lives.

I met Ann's neighbor, Tina, for lunch today. She picked me up at Ann's house and she introduced me to a new restaurant. We had a good time chatting and getting to know each other better. She then took me to the Dairy Godmother, a family owned ice cream shop in Del Ray, VA. I have heard of this shop for years, and Mattie's preschool teacher, Lana, even gave Mattie a wand from the Dairy Godmother herself! We still have this wand. So today, I got to meet the Dairy Godmother in person and to sample two different custards. Since I love ice cream and desserts, this stop was right up my alley.

After our lunch together, I went back to Ann's house and watered all her flowers. It was 105 degrees today and everything is absolutely in need of water. I spent about an hour outside in the heat, and after that, I would have to say I was wiped out. I then headed to visit Mary. Mary had a rough day in which she was very tired. So much so, that she spent a good portion of the day napping. When I got there, I couldn't get her up, but by 4:30pm, I basically wouldn't take no for an answer. I pulled blankets off of her and started talking to her and showing her pictures that Ann sent me through email, which I printed out for Mary to see. Throughout the afternoon, I text messaged Ann, because I figured the best way to stimulate Mary would be for Ann to call her. Ann called and spoke to her mom, and as they were talking, I could see Mary perking up. I sat with her and helped her with her dinner, and we chatted about all the adventures her grandchildren were having on vacation.

Tonight, I met Tamra (our friend and co-chair of this year's Walk logistics committee) and her daughter, Louise for dinner. It was Louise's birthday today, and while she was having dinner with several of her friends, Tamra and I sat at an adjacent table and had dinner. We had a delightful conversation and covered a lot of territory. I told Tamra about my issues with moving Mattie's shoes and Tamra got my feelings right away. Tamra came up with some clever ideas about how to bring Mattie's shoes back to the staircase by using a staircase basket, as well as some other things to consider. We talked about food, family, Mattie, vacations, and so much more. We ended the evening with a delicious piece of chocolate cake. Chocolate is my medicine of choice, and I consumed enough chocolate over the last two years, to keep chocolate manufacturers in business!

While I was dining with Tamra, Peter went out to dinner with a former colleague. They had a nice time chatting, and this colleague happens to be a cancer survivor as well. So there is something to be said about being a member of this club. No one wants to join, but one thing is for sure, it is impossible not to survive the membership process without scars, insights, and a profound lifestyle and mindset change.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What you said about marriages coming apart after the death of a child are true; I think that what helps in your case is that while you don't grieve alike you both work hard to keep the communication open and you share what you feel. You are both deeply loving, caring people and you naturally reach out to each other in the same way that you reach out to your friends, coworkers and others in your lives and that helps enormously. It is clear that you love and respect each other and that you are friends and I am glad that has carried you through the battle to this point. However, as you know better than anyone else, the path that grief marks lasts a lifetime so continue to remember to care for and be gentle and patient with each other. I can understand your divided reaction to the Post reporter's request; in a way, the entire apartment has become a shrine to Mattie's memory. It both marks his departure and yet somewhere in your heart, his things are there waiting for him to return. Allowing someone into who is not emotionally connected to Mattie, to take pictures that will be "judged" by an unknown audience is a very difficult thing. With all of this and your anniversary, I am glad that the day ended with a positive connection with Mary and the staff; I can close my eyes and see all of you there watching that movie. I know Mary appreciates all that you do and it is clear that the staff enjoys your visits as well. Would that everyone in Mary's position had someone to come and visit who cares as much as you do. As I practice today, I send you my energy to help you navigate those deep and fragile places on the path. I hold you gently in my thoughts."

July 15, 2010

Thursday, July 15, 2010

Thursday, July 15, 2010

Tonight's picture was taken in July of 2008, before Mattie was diagnosed with cancer. In fact, the picture was taken close to today's date, because today is our 15th wedding anniversary. We always took Mattie to the DC Aquatic Gardens around our anniversary! Why? Because these Gardens are exquisite, and if you love water lilies and the amazing lotus flowers they produce, then you won't find a better sight in the city at this time of year. The Gardens are serene, not well known about (so they are always peaceful), and there are always nature lovers taking pictures all over the Gardens. So on our anniversary, I thought it would only be fitting to show this picture. Also note that Mattie was holding a car in his left hand!  He never went anywhere empty handed.

Poem of the day: REMEMBERING by Elizabeth Dent

Go ahead and mention my child.
The one that died, you know.
Don't worry about hurting me further.
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent,
Pretending he didn't exist.
I'd rather you mention my child,
Knowing that he has been missed.
You asked me how I was doing.
I say "pretty good" or "fine."
But healing is something ongoing.
I feel it will take a lifetime.


I began my day with Peter giving me an anniversary card. I read the card and it was very touching, and made me cry. This is our first anniversary since Mattie's birth, that we spent without Mattie present. In many ways, today was a hard day. It is hard because on some level one of the ways to mark a marriage's milestones is through one's children. Children are the symbols of our marital union, they signify in many cases the strength, beauty, and future of this union. Mattie was indeed a crucial part of our family and raising Mattie was something that bonded us as a couple and enhanced our relationship. With Mattie gone it would be easy to translate this loss down to our marriage. It takes a great deal of understanding, commitment, and love to keep a marriage going after the loss of a child. The statistics of couples who divorce after losing a child are staggering. We can easily see how this could happen, because such a loss challenges and wreaks havoc on one's mind and heart. Despite this huge and devastating loss, Peter explained to me that he can't imagine his life with anyone else, and that he is happy we have each other.

I also received a beautiful e-mail from Margaret (my friend, and Mattie's first preschool teacher) today. Margaret used an electronic greeting card company that Mattie used to love. When I opened up her card it was filled with automated flowers, butterflies, and a squirrel. Margaret would send me these types of cards when Mattie was in the hospital. Mattie literally would sit on my lap for an hour watching each and every card. So today's card made me reflect on my moments with Mattie and naturally the fact that fifteen years have gone by since I was married. Karen e-mailed me as well as Audrey, a close college friend. They both acknowledged how today must be a bittersweet day for me. Both Karen and Audrey survived our wedding day, which was about 115 degrees, and yes on that particular day I was actually HOT!

As the day progressed, I went to Ann's house to check on her garden, to weed, and water some things. While there, Peter let me know that the reporter from the Washington Post contacted him to let us know that our article will be in this SUNDAY'S edition of the Post. The reporter asked if it would be okay for a photographer to come to our home on Saturday to take a picture of us with Mattie's things. That seemed like an innocuous request, right? Well for me, for some reason it wasn't. Peter met me for lunch today, and he could see I was far from alright. I went from screaming and snappy, to completely shut off. Peter wasn't sure what was bothering me, so he kept pursuing what the issue was. He really wanted to help and understand. What bothered me was two fold. The first part has to do with the article itself. Naturally I am thrilled Rick is writing the article and following up with us from last year. However, seeing this article published for some reason signifies the permanence of Mattie's death. I of course know Mattie isn't coming back, but an article documents the loss and highlights the reasoning behind the Foundation. I am not sure why I find that hard to accept, but I do. The second part of the issue is that I feel our home looks like a preserved museum of Mattie. I want it this way and I understand why I need it this way for now, but I am not quite sure others will. So I began to get edgy about the notion that others would be coming in and perhaps evaluating my surroundings.

Through lunch, Peter and I chatted about some of these feelings and the loss of Mattie in general. We do not always get the opportunity to do this, because Peter works long hours and by the time he gets home at night, neither one of us have the energy it takes to process our grief. So moments like today are in a way a gift, because only we can truly understand the depths of this loss. During lunch, my sister-in-law called us. Since I am NOT a phone person, I normally do not talk with friends and family in this way anymore. But I did get on the phone and chatted with Lisa and was touched that she remembered us today and reached out to us. As lunch was ending, I ordered bread pudding to go for Mary. I know Mary (Ann's mom) likes bread pudding, and I wanted her to have something special for our anniversary.

I spent several hours with Mary today. She was thrilled to have the company, since she misses Ann when she goes on vacation. I helped Mary make phone calls, we chatted, and we even watched a movie together. Normally I do not get hooked into these Lifetime Movie Network films, but today's caught all our attention. The title of the movie was The Governor's Wife. The main character was clearly mentally ill and plotted her husband's death and basically planned the deaths of those around her who were going to foil her ultimate goal. I was glued to the TV, Mary was following along, and because we were so animated, even Mary's caregivers came over to the TV. Literally there were four women absorbed into this story, and at one point Mary took a phone call during the movie, but as soon as the call was over, she wanted an update on the movie. So we entertained each other today, and Mary LOVED the bread pudding.

As I close tonight's blog, a comment that Kristen (Mattie's oncologist and our friend) made on Tuesday has stuck with me. She acknowledged that I talk about a whole cast of people in the blog from day to day, or week to week. So much so, that my faithful readers may feel like they know some of my crew such as my mom, Ann, Karen, Mary, Charlie, Margaret, Nancy, Tanja, Junko, Carolyn, Ellen, Christine, Tamra, Brandon, Maya, and Jocelyn. This is the short list,  but in reality I have a long, long list of people who play very important parts in my life. I consider myself quite fortunate to have such a fine "cast." As you have grown with me over the past two years, you have in a way also tracked the thoughts and feelings of many of the people in my life. In a way, Mattie's blog is an amazing chronicle.

The blog is a historical document that now, as I look back at, I am thrilled to have it. Peter and I couldn't remember how we celebrated our anniversary last year. Well after cancer, I can't remember what I did two days ago, much less last year. So I opened the blog to July 15, 2009. I learned that this was the day we stopped Mattie's anxiety medication, and it was an extremely challenging day! It was a day filled with tantrums and mood swings, and as I read what I was living through, I wondered how on earth I survived?! In fact, after reading that posting it is much clearer why I always feel physically run down now. Because the intense stress Peter and I lived under for over 15 months was incomprehensible. Last year, we did go out to dinner though, because Louise came to play with Mattie. However, toward the end of dinner Mattie called us and wanted us to come home. I don't think he was upset, he instead had his mind made up that he needed to buy a Lego set that night, and he wasn't going to sleep without it. So after dinner, Peter took Mattie to the Lego store and that was when we acquired the Taj Mahal Lego. Which by the way is still up and assembled in the middle of my living room. It seems quite remarkable without the blog, I would have had no recollection that the Taj Mahal was purchased on our anniversary and that this structure has been in our living room for exactly ONE year.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am not surprised by the Georgetown Hospital attendees being a trigger for your memories. Even now, many years later, things far more removed than that will be triggers for memories for me. I think it speaks volumes to your determination and dedication that you were able to bring yourself back to the task at hand so quickly. Animals definitely are sensitive and there are many stories of their reactions to things we cannot see or feel or smell; times when they saved a life or warned of some problem that only they could identify. Animals mourn too, they react to the loss of someone (person) they love, as well the loss of another animal that they live with. I really appreciated what Melissa wrote in her email. It sums up nicely so many of the ways your blog has touched others and made them more sensitive, thoughtful and caring. Many of us who went about pretty oblivious, now realize just how blessed we are that those we love and care about are healthy and that almost everything else takes a back seat to that. As I practice today I send you my energy and I hope your visit with Mary is a good one. I hold you gently in my thoughts."

July 14, 2010

Wednesday, July 14, 2010

Wednesday, July 14, 2010

Tonight's picture was taken in May of 2004. Mattie was two years old. I do not even recall this picture, but clearly Peter was catching Mattie in the moment of giving me a huge hug. He was two, but Mattie was very strong, and you just have to love his facial expression as he wrapped his arms around my neck. For some reason lately, I have tried to imagine what it actually felt like when Mattie hugged me or held my hand. As time passes, unfortunately those memories seem to fade. As does the feelings of what it was like to have a child's love. So from my perspective time is not necessarily healing, instead it can bring about additional pain or a deep sense of longing.

Poem of the day: Tuesday again by Charlie Brown


Your passing
It shook me to my soul
And evermore on Tuesdays
I will pay the toll
Some Tuesdays make me teary
Others just make me mad
Right now thinking of Tuesdays
Just seems to make me sad
I try to keep on going
I do the best I can
People ask me what I want to do
I try, but I can't plan.
Maybe in the future
Tuesday will be just another day
But for now it remains special
In a sad, sorry sort of way.


This afternoon, I attended a meeting on behalf of the counselor licensure board. The meeting was sponsored by the DC Hospital Association. The attendees at the meeting were primarily human resource personnel and other hospital administrators from the District of Columbia. The nature of the meeting was to alert these personnel to some of the changes made in the laws regulating the practice of the following professions: counseling, psychology, physical therapy, occupational therapy, and respiratory care. We also gave possible hiring scenarios that these HR personnel may be faced with, and we discussed the ethical and legal implications of hiring someone not licensed to practice in the District. It was an informative meeting, and naturally at the meeting, Georgetown University Hospital (which is located in the District of Columbia), was represented. After the Georgetown group introduced themselves to all of us, I immediately was hit with many memories of Georgetown. I wasn't daydreaming per se, but I could see my mind drifting off to the days we battled cancer at this Hospital. I quickly pulled it together, but it was an interesting trigger.

Based on the timing of the meeting, I was unable to see Mary today. Fortunately Tanja spent the afternoon with her, so she had company and was stimulated. However, I did call Mary to find out how she was and to let her know that Ann was unable to call her because her cell phone battery stopped working. I explained all of this to Mary, and it registered with her. However, Mary seemed very concerned that I did not see her today because she thought I wasn't feel well. I assured her that wasn't the reason, that I just had a meeting, but would see her tomorrow.

When Peter got home from work, we decided to cook dinner together. We cooked a new recipe from Giada De Laurentiis' cookbook. Peter and I are having fun with this cookbook, because we have cooked enough recipes from it, to know which ingredients we feel need to be altered in quantity. In any case, it was an entertaining evening with time to chat about our day. We ate dinner outside on the deck. For those of you not living in DC, you need to understand that it is VERY hot and humid out, so much so that most people wouldn't want to eat outside. However, this is the temperature I excel in and feel the most comfortable with. So Peter is a good sport as he deals with my need to be outside, and naturally if we are outside, Patches (our cat) is right beside us. Peter was telling me the ritual Patches has EVERY morning with him. As some of you may recall, I mentioned that Patches is really Peter's cat. She responds to him and follows him around as if she were a puppy. As soon as Peter's alarm clock goes off in the morning, Patches immediately greets Peter by his side of the bed and rubs her head against his feet. Patches truly is a case study, and what Peter and I find simply fascinating is all this needy behavior that she is expressing now, went away when Mattie came into our lives. Now that Mattie is gone, she has reverted back to her old ways. So perhaps we enable her behaviors, but when Mattie was around, she seemed to understand that her antics weren't our first priority. I am in a way observing Patches reaction to the loss of Mattie, and that may sound strange, but there is a definite difference in her, which clues me into the sensitivites of our furry friends.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I remember when I was growing up that "cancer" was a word no one ever said. It was as if it was a curse word or a contagious disease that you would catch if you acknowledged it. I do think we've done better on that front. People will actually say that they or someone they love is battling cancer which is a good thing because it is very hard to fight a foe you allow to hide in the shadows. I believe your blog and your battle have reached far beyond your original plan of keeping people apprised of Mattie's situation and well into a number of other areas. You've taught people how to deal with the medical community, helped remind people of the important things in life, offered a myriad of ideas to people who want to reach out and help others, and even found a way to voice grief that I feel is truthful and compelling. I know that many of us have been the beneficiaries of your care and concern and appreciate that even in your grief you continue to reach out to help others. I know that Mary is thankful for your attentions and you are "her angel" as her days would be far darker without your visits. As I practice today, I send you my energy to help you continue to help others. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I just finished the blog and loved your Mom's story. Human understanding and compassion are great gifts for everyone. Mary definitely flourishes as a result of your pinch hitting for Ann. Keep singing! Wonderful shares!"

The third message is from my colleague, Melissa. Melissa wrote, "It's been far too long since I've written, but you are never far from my heart. I continue to be amazed by how you are able to share and continue in the journey on the blog and I am so grateful to you for it. I'm grateful personally because you are continually teaching me about unimaginable grief, persistence, perseverance, survival, hope, and connection amidst the depths of utter loneliness and despair. I feel that I've always tried to be a student of life... perhaps drawn to counseling both as a way to help others and as a way for me to help myself by learning about living and coping and hardship and what makes a life most worth living. I'm learning more and more each day and I learn the most from those who are truly willing to bear their souls and be honest and go deep...so despite how sad your story and others' stories are, I am drawn to them. I want to learn so that I can be a better instrument to others during their time(s) of need. I also want to learn so that I can develop the things in me that might better help me through the tough times that are inevitably ahead. Your willingness to share and open up and be vulnerable and just be you as much as you can is so refreshing. I know that must sound so strange. But many people struggle to achieve this sort of real-ness in life. You are offering the gift of yourself and your journey to whomever will listen/read. I know that it is and will be a blessing to countless others. A mother in my church whom I did not know previously recently learned that her 4 year old daughter has stage 4 neuroblastoma. I know that each cancer is different, but the shock and horror and anticipatory grief and battle to maintain hope and provide love and protection to her child must be much the same. I've mentioned you already to her and talked about your blog. I expect that reading your earlier entries would ring quite true for her. I believe that connecting people to other's with similar experiences can be extremely helpful when dealing with something so catastrophic and so unique--others who have been there can offer a unique sense of support, encouragement and validation. I trust that at the right time she will find that in your blog or through other people like you who are willing to share and give despite all that they have lost. Thank you on her and others' behalf for that. It is truly a gift that cannot be measured. Also, I've been serving as the "meals in times of need' ministry coordinator through our church for the past two years and felt that it was a vital and practical way to serve those in our church family during their time of need. I've always been in awe of the amazing service that your friends, family and community provided (and still provide) to you and noticed that it certainly did not go unnoticed. I would love to be able to coordinate an effort that is even half of what you had in order to demonstrate our love and Christ's love through us to this single mother and her family (as well as others we've served). My determination to do so is elevated because of what I've seen in your life. I guess there is a sense of pass it on or pay it forward. I guess what I am saying is, you and Mattie and Peter have made a significant ripple in my life which I humbly hope to use to pass on to others."

July 13, 2010

Tuesday, July 13, 2010

Tuesday, July 13, 2010 -- Mattie died 43 weeks ago today.

Tonight's picture was taken in August of 2003. Mattie was 16 months old. He was full of curiosity and what he is staring at was a box full of electric trains that one of my mentors gave me for Mattie. Mattie was fascinated by trains, and he could play for hours assembling, designing, and running trains on the tracks. I found this picture tonight in one of my files, and I particularly love the expression on Mattie's face. Sheer wonderment and surprise!

Poem of the day: Symbols of Hope by Charlie Brown

Butterflies and bows
Symbols of hope
I hang on to them
They help me cope
As I go through my day
Thinking of you
Wondering what
I am to do.
I try to be
Upbeat and kind
When tears overwhelm me
I try not to mind
Thank you to those
Who help me to see
That your thoughts are often
With Mattie and me.

As tonight's poem states, your thoughts and reflections to me are true symbols of hope. I admit that certain days are harder than others. Perhaps because today is a Tuesday, or the 43rd week that Mattie has been gone from our lives, I naturally become more reflective and sullen. Despite these feelings, I began my morning with several e-mails. The first e-mail I received was from Lesley, a friend of my sister-in-law's. Lesley lives in Boston, and my faithful readers may remember that I never met Lesley until the day of Mattie's celebration of life ceremony. She traveled down just for the day to personally meet me, since she is an avid blog reader. I learned about two weeks ago that Lesley's mom has cancer, a very aggressive form of cancer. In the midst of helping her mom through her first round of chemo this week, Lesley wrote to me. You will see her e-mail below. Needless to say what she wrote has remained in my thoughts throughout the day, because Lesley helped me to see that by sharing my stories and experiences, I am helping others. Not that anyone can be prepared for cancer and its treatment, but Lesley mentioned that she saw many of my frustrations unfold right before her eyes this week in the hospital. I think having knowledge about a medical system de-mystifies the process, and I am glad that Lesley feels that the blog was able to guide her in the cancer maze. Sometimes I need an e-mail like Lesley's to help me put things into perspective, because when grieving it is easy to drown in feelings, emotions, and thoughts. But my ultimate goal is to help others, and I think the best way to help others is to educate patients, their families, and the caring community. I asked Lesley if she would mind if I shared her story with you tonight, and her response was she was happy to because "it is truly a tribute to your openness." I take that as a high compliment, because cancer is a part of so many people's lives, and just like we would talk about our feelings and thoughts regarding our job, home, community, and volunteer positions, we should be able to be open about illness and its impact it has on us. Thank you Lesley for reminding me of this mission that I hold so dear.

The second e-mail I received today was from my friend and colleague, Nancy. You will see it below. In her e-mail, she includes Bray's, Traditions of Devonshire's fortune telling nursery rhyme, entitled, Monday's Child. Nancy wrote to acknowledge yet another Tuesday in my world, and according to this poem, Tuesday's child is full of grace. Ironically I went into labor on a Tuesday and Mattie died on a Tuesday. However, despite going into labor on a Tuesday, Mattie was technically born on a Thursday. Interestingly enough, the poem says, "Thursday's child has far to go." This line struck me today, because how much farther could Mattie have gone other than heaven?


The bright spot of my day was I met Margaret for lunch. Margaret was Mattie's first preschool teacher, and when Margaret and I met each other years ago, we instantly clicked, and have been friends ever since. Margaret always introduces me to either a new restaurant or experience. Today she introduced me to the french restaurant, Bastille in Old Town, Alexandria. We had a delightful lunch, and I can say three hours just flew by! Margaret told me about a Lego exhibit at the National Building Museum, which I would like to see, and we discussed other ideas regarding the Lego company which intrigued me. As I chatted with Margaret about my thoughts and feelings, she sat back and basically said, you have to write a book. Since Margaret is an avid reader, I took this as a high compliment. Before Margaret and I said our good-byes, she handed me a gift. The gift was a book entitled, "My life in France" by Julia Child. Margaret remembers my story of how Karen and I would watch Julia Child together when I was in 6th grade. So today's gift brought me back in time, and made me chuckle.

Tonight I received an e-mail from Jerry. Jerry was one of Mattie's favorite music volunteers at the Hospital. In his e-mail message, Jerry said that he wanted to thank Mattie for bringing us together. Jerry told me he was at Sunrise today, which was Mary's previous assisted living facility. Jerry remembered the time that we bumped into each other at Sunrise in the Fall of 2009. Jerry said in his mind he was hoping I was still there and he would bump into me today. He said it would be a better sighting that even seeing Scarlett O'Hara walk down the spiral staircase. That made me laugh, Jerry has a way with words! Jerry wants to know when I will join him singing again. He has invited me to sing at the hospital and at Sunrise. I told him I would think about it, since singing and music have always been important parts of my life.

Speaking of music, when I visited Mary today she was literally doing Karaoke. It was a riot. She was holding a microphone and singing. I could have used Jerry and Nancy today! Mary did a great job, and I helped her sing several songs. The last song we selected was Neil Diamond's Sweet Caroline. As I have learned over the years, every good and faithful Red Sox fan loves this song. Mary was very chatty today, and we talked about  all sorts of things. When I left she reminded me that I am her angel, and that God sees all good deeds. I admire Mary's faith, despite it being tested in numerous ways.

My mom sent me a very moving story tonight entitled, A Day of Illumination. I told her that her story illustrates to me that cancer changes one's perspective. It forces you to think beyond yourself, to see the bigger meaning and picture in life, and in a way to care for your fellow man compassionately. I hope you find her story as moving as Peter and I did.

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A Day of Illumination by Virginia R. Sardi

Last week, I had occasion to go to the tailor to have some alterations made in a few things I had purchased. The tailor’s name is Felicia and I have known her for many years. She shares a common heritage with Mauro because she was born in Calabria and so was Mauro’s mother. Mauro likes to chat with her in Italian and loves those encounters because it gives him a chance to practice his linguistic heritage which is so rare since there are so few opportunities to do that here in Los Angeles.

Over the years, we learned that she had a grandson and when Mattie was born we would trade stories about how they were doing, monitoring and keeping each other updated on the latest events that we regarded as major milestones in their lives. When we lost Mattie, she was heartbroken for us and I sensed she could feel the pain we were living through because she had an only grandson of her own, as precious to her as Mattie was to us. She could relate because she could personalize our loss and because she is by nature a deeply empathetic lady. When I arrived at her place of business last week, she related a story to me that touched me deeply. She explained that I had just missed her last customer who left moments before I came and told me that she had picked up a dress that Felicia had altered for her. What was special about this customer, she went on to tell me, is that she is suffering from stage four cancer. Her cancer has invaded her pancreas, brain, and lungs. Her doctor told her this week that the deadly disease has spread to her bones. Her sadness was evident as she explained to Felicia that she would be wearing the dress on a brief vacation she was taking with her husband while she still could. Felicia being the ever sympathetic listener mentioned that she knew a family whose little boy had died of bone cancer. What is remarkable is what came next. The cancer stricken woman, despite the agony she is living in everyday bravely fighting to stay alive, told Felicia that she would gladly take on the pain of that little boy because no child should have to bear such suffering. I do not know this woman but I write in tribute to her caring spirit shining through in support of a child despite her own personal pain and misery, a child she did not even know. She as an adult could not bear the pain she was forced to live with but expressed a willingness to take on more, if only to spare a child the punishment of relentless pain. In this brief encounter with Felicia, I experienced an exhilarating moment of illumination about the greatness of human compassion under duress that makes me see how much better the world would be if more hearts could be opened to the hidden heartaches that haunt the gravely ill and their care-givers. Wherever she is, I will pray that she will be the recipient of a miracle of mercy but if that is not meant to be then, I pray that God will make her transition from this life as painless as possible when her time comes!

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I would like to end tonight's posting with four messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I have to confess I am behind on the blog...but I read several entries today and what I am always reminded of when I return is the cast of characters of your life. I think about your connection to them: Mattie. These relationships have grown and blossomed and bear fruit for you in the form of support, friendship, and new experiences. I witness how far you are reaching... to Lauren in Pennsylvania and her classmates, to friends of Mattie's, and to those whom you don't know and may never know. The impressions you have made and continue to make cast a wide net but are also deeply driven. Lives and entire thought processes are changing because of Mattie and the two of you. It may not always be clear but try to remember how you touch the lives of others and what a difference you are making. This Tuesday and everyday, I'm thinking of you."
 
The second message is from my friend, Charlie. Charlie wrote, "I don't often comment on the picture you post but I have to say I love this one of Mattie. I think it captures his spirit and zest for life at such an early age. I so appreciate (as you do) the gifts of your two young friends. Katharina's book is amazing and as we said yesterday, any memory of the beloved, given to a mourner is one of the greatest gifts one can receive. How special that she put them in writing for you to have as time passes. Lauren's efforts are so special as well; how wonderful to turn such an awful situation (a cancer diagnosis) into a good deed for someone else. I am so thankful that she has no evidence of disease and may the Blessed One keep her cancer free. As you said, she is the perfect example of how one person can make a difference. It was very kind of you to go to see Mary (Ann's mom) and I know by her reaction that she really appreciated your visit. When you don't have a job or some specific task to accomplish on a given day, the days can easily run together and you get disoriented. Add illness or other problems to that and it gets much worse. I know Mary is very happy to have you in her life. I will be thinking of Brandon today as he makes his jump. I hope it is all that he expects and that they do it safely. I hold you gently in my thoughts."
 
The third message is from my sister-in-law's friend, Lesley. Lesley wrote, "I just finished four days in the hospital and I thought of you so often. I know that this is the first of many hospital stays for me. I did not have to entertain my mother or find the strength to advocate for her because she still does a great job on her own and yet it was exhausting. While I was there I witnessed so many of the same frustrations you went through...the admissions process, making sure the care was accurate, and watching her anxiety rise as we entered evening. My mother is aware of you and she began to cry thinking of your pain and grief. She asked me a great question, " Why do you read the blog still?" I told her that you have impacted my parenting, perspective on life, and now I reflect on it often because it modeled how to be a caretaker. She wanted me to thank you because she said I did a good job and you taught me well. I thought I would pass along her gratitude."

The fourth message is from my friend and colleague, Nancy. Nancy wrote, Yesterday's blog was so rich in the goodness of children. It tells of the importance of listening carefully as children tell so much without the years of education and experience. Katharina and Lauren are two special examples of my brief survey. I am glad that Katharina is doing well and would not be surprised if she is able to walk without her crutches before the month is up. And Lauren, her Bows for Hope captured so much promise and how wonderful that she is disease free. As far as these two gifts for you, just another sign that you are doing the work that you are meant to be doing right now. We all wish that Mattie hadn't gotten sick and died. Yet, you have shared how much his life has impacted people far and wide and this is how he will be remembered: a beautiful sun, rays of hope, and glorious butterflies. What a legacy for a 7 year old! As I typed my subject for today, I was reminded of the nursery rhyme; Monday's Child. I looked on Wikipedia to get some information. It was published in England,1838, in A. E. Bray's, Traditions of Devonshire as a fortune telling nursery rhyme. As I don't know how to scan something, I'm enclosing it here:

Monday's Child

Monday's child is fair of face,
Tuesday's child is full of grace,
Wednesday's child is full of woe,
Thursday's child has far to go,
Friday's child is loving and giving,
Saturday's child works hard for a living,
But the child born on the Sabbath Day,
Is bonny and blithe and good and gay.

Tuesday's Child is full of grace, that is your Mattie.

Finally, years ago, when Susan began the Creativity Room at our AMHCA Conference, I created this quick poem. I thought is was finished, but, now I'm not so sure. What do you think?


WINGS

Released from the womb, a stub
If nurtured, inch by inch, maturing
Test after test, hellos and good byes
The ultimate test to try, to fly!


Only now as I reread it do I see that I was envisioning a butterfly, Mattie's symbol. I send you sweet thoughts on this Tuesday, the marker of another week.

July 12, 2010

Monday, July 12, 2010

Monday, July 12, 2010

Tonight's picture was taken in June of 2003. Mattie was over a year old and full of life and energy. Mattie was our child who NEVER slept. He did not like napping, and sometimes I wondered whether he did not want to go to sleep because he thought he was going to miss out on the fun. It seems so unfathomable that a child with his energy, life, and spirit, could be consumed by cancer in a year's time.

Poem of the day: On the Inside by Charlie Brown


I know to you
I look calm
But inside is
The eye of the storm
A tornado spins
Within my head
All is chaos
Because you're dead
I mostly hold
My tears inside
The extreme sadness
I try to hide
But sometimes
It gets away from me
Then a glimpse of my tragedy
Is what you see
But only a glimmer
Of the intense feelings inside
I wish I could get off
This long, painful ride.

As you know from last night's blog, I received two beautiful oak tree related gifts yesterday. Today, I received two more gifts. The first gift was given to me when I went out to lunch with Katharina and her mom, Tanja. Katharina is on crutches and is doing very well. She is also in good spirits, considering she will be on crutches for a month. Katharina created a memory book, and I must admit this gift surprised me. On the front cover of the book, she drew a beautiful sun, using all of Mattie's favorite colors. I wanted you to be able to see the cover, so I took a picture of it for you. The title of the memory book is, "Mattie, his fight against osteosarcoma, and me." Katharina dedicated the book to Mattie, myself, Peter and all our family. In the book Katharina shared many memories she had from her times playing with Mattie. It was lovely to see them captured on paper. However, in Katharina's first page of the book, she talks about how Mattie's diagnosis impacted her. It seems that whenever she would think of complaining or wasn't happy about something, she would pause and think about what Mattie was going through. In essence, his cancer, made her re-evaluate her own thoughts and feelings, and she was able to see how lucky she is to be healthy. That is a very powerful statement and revelation from a ten year old. This gift made an impression on me, because it captures special times with Mattie, but it also illustrates to me that Mattie's cancer deeply affects all our lives, even the lives of his young friends.

The second gift I received was from Lauren. Many of my blog readers know Lauren. She is 12 years old, and was diagnosed with osteosarcoma around the same time as Mattie, July/August of 2008. I became connected with Lauren's mom, Carey, through e-mail, since Lauren was receiving treatment in Pennsylvania. I am happy to report that Lauren has No Evidence of Disease. For Lauren's end of school year project, she decided to create a project entitled, "Bows for Hope." The bows were hand assembled out of duct tape by Lauren and three of her friends. Each bow was sold for about 50cents. The beauty of this project is it took off, it energized her middle school, and united them around a cause. The week of bow sales, I received several e-mails from Lauren's teacher. She couldn't get over the number of children lining up outside her classroom each day to purchase bows. Lauren is a true example of how one person can and DOES make a difference. I admire Lauren's commitment to helping other children battling cancer, and instead of retreating (which could be easy to do after a cancer diagnosis), she is being proactive in letting others know about the disease. Lauren has educated her community about Osteosarcoma in a creative and meaningful way.

Along with the bow that she sent me (you should know that behind the duct tape bow is a bobby pin), Lauren also wrote a beautiful hand written note. The note says:

Dear Mr. and Mrs. Brown, I am pleased to present you with a check for $634.42 for your Mattie Miracle Cancer Foundation. As you know, I raised the money through my school by selling duct tape hair bows. It was a hit and my fellow students were very generous with their contributions. I can't think of a better cause for my donation. My hope is that other osteosarcoma children will have an easier time with the help of your Foundation. Love, Lauren

Lauren's end of the year project was an amazing fundraiser for our Foundation. I told her mom that Lauren should be an honorary member of our fundraising committee. I deeply thank Lauren for her hard work, vision, and passion to help other children and their families with cancer. I also am very grateful to Lauren's parents, teacher, and entire school community for supporting this remarkable project.



I had the opportunity to spend some time with Mary (Ann's mom) today. When I first arrived, Mary seemed sad and tired. However, as we began talking and I reoriented her to the day and where Ann was, I could see her perking up. It only further illustrates to me the power of a connection. It can be a very healing factor. We talked about Ann's trip, Mary's time living in Massachusetts, and the upcoming visits that her family will be making to see her this summer. Mary is greatly looking forward to these visits! While chatting with Mary today, I was looking out the window. A beautiful monarch flew by, minutes later, it flew by in the opposite direction. I look at these butterfly sightings now as a sign from Mattie. A sign that he is thinking of me, but that I am also in the right place at the right time!

Tonight, I received a text message from Brandon's mom, Toni. As many of you know, Brandon was Mattie's big buddy at the hospital. Toni let me know that Brandon's birthday is tomorrow, July 13. Brandon has decided he wants to try sky diving as his birthday gift. I told Toni, that Sean Swarner needs to move over, because here comes Brandon. Brandon..... Conquers cancer, and now taking on sky diving! Brandon is doing this in tandem, so an instructor will be jumping with him. For all my readers who have followed Brandon's story over the years, please keep him in your thoughts this weekend, as he takes this very adventuresome plunge. Toni also told me that she and Brandon were walking today, and right in their faces flew a monarch butterfly. Toni felt that Mattie was wishing Brandon a happy birthday! The symbol of the monarch has taken on great meaning to so many of us who were touched by Mattie's life.


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I see many repeating patterns as you walk your path; nature especially trees, butterflies and the breeze that moves your wind chimes. Living in the city it is not so common to see these things, so for them to crop up over and over again in such a myriad of ways has to be a connection to something bigger for you. If I were a practitioner of a Native American religion or a druid I would say that the acorn and the butterfly have become sort of totems or sacred symbols in your life. I find it interesting that both of those start with something that is almost impossible to recognize when it is mature. In that way, they reflect what Mattie has become as he has transitioned to something beyond us but clearly still a force in your (and many others) lives. Sometimes when we practice, the instructor talks about the internal practice, the seeing with the "third eye" which sees within the spirit. As I practice today, I send you strength for your internal vision to help you find your way and to continue to see Mattie's spirit reflected in your life. I hold you gently in my thoughts."

July 11, 2010

Sunday, July 11, 2010

Sunday, July 11, 2010

Tonight's picture was taken on April 20, 2002, when Mattie was 16 days old. In the picture, it looks like Peter's eyes were closed, but they really weren't. He was instead batting his eyes open and closed to get Mattie's attention. As you can see Mattie was eagerly trying to focus! Naturally in the background was Patches, our cat, resting on the couch. When Mattie entered our world, Patches did not know what was going on. We were up at all hours of the day and night, and she wasn't getting the attention she was accustomed to. Mattie was a huge adjustment for her, but she learned quickly. In a way, Patches misses Mattie too. Patches spends a good portion of her days now lying on Mattie's bed, something she NEVER did when he was alive. But she doesn't just lie on the bed, instead she curls herself up into a ball inside of "Sunshine," Mattie's stuffed animal albino boa constrictor, which sits on Mattie's bed.

Poem of the day: The Search by Charlie Brown


When I look back
Upon my time
What will I say
Was really "mine?"
My work, my job
My home, my space
None of these
Can take first place
I am, I was
A mother of
A special child
Filled with love
He embraced his life
Until age seven
And touched many hearts
Before heading to heaven
And now I'm left
And trying to find
Something else
For my heart and mind
What is my "job"
What am I to do
Since my life task
Seems to be through
I am questing
I am on a search
I don't think my answers
Are found in church
Perhaps in nature
That's His too
And where I still connect
With my memories of you
All the rest just
Seems to be
A way to wait
For eternity
Some days hope
Seems near to hand
And on others
Like shifting sand
So I go on searching
For those things
That will give life meaning
And the satisfaction that brings.


When you lose a child, it leaves you "searching," as tonight's poem so aptly states. Searching for meaning, purpose, direction, and a future. Mattie's cancer diagnosis and then his death, in a way were two different back to back traumas for Peter and I to deal with. I find that surviving a trauma fragments one's life in a way, because my life is broken into times when I was a parent of a healthy child, times when I was a parent battling pediatric cancer, and now my current existence after Mattie's death. Some days, it is hard to put these fragmented parts of my life together, and I find this is the case because this is how a traumatized brain learns to manage and cope. It is coping in steps and in pieces. I am sure if I accepted all these realities at one time, I most likely would be paralyzed. I recently read Sammie's mother's blog. Many of my readers were familiar with Sammie, who died of Osteosarcoma in October of 2009. Chris (Sammie's mom) basically said on the 9th month anniversary of her daughter's death, that when the real reality of this loss hits her, she dreads this day, because it will be overwhelming. That may sound strange to some of you, because you are probably saying.... don't they know their child died!? Yes cognitively we get it, but it is quite another story to emotionally accept the true ramifications and the many layers of this loss. I understood exactly what Chris was saying. I have had some of these flashes of reality, and they are not pleasant and can be very overwhelming. In those times it almost feels like there is a tornado going on inside my head, and as anyone knows, when in an eye of a tornado, there is no escape, there is only chaos. Naturally, when having this feeling, I become scared because I am always uncertain as to when this feeling  will pass, or whether I will instead get sucked inside this chaos.

Peter and Dr. Bob spent the afternoon at a restaurant together watching the World Cup. While Peter was out, I completed our final set of Foundation Walk paperwork. It was a good feeling to accomplish this! I went out for a little bit, but then came home and sat outside on our deck to read. When Peter returned home, he brought up two packages that were held for us at our front desk. Today's gift theme centered on oak trees and the memory of Mattie. I found it ironic that two separate people sent us oak tree related gifts. To me there is a message in that alone. The first gift is a book entitled, "The South Overlook Oaks." The book was sent to us by its author, John Reardon. John wrote a lovely inscription inside the book, in which he dedicated it in memory of Mattie. John is a SSSAS parent, and this is the perfect book for us considering that the second grade families at the school just dedicated an oak tree to Mattie on the lower school campus. John's introduction caught my attention, because he has his readers imagine how much oaks trees have seen and heard in all the years they have been standing in one place. These oaks are like windows into our lives. The second gift was sent to us by my in-laws for our upcoming 15th wedding anniversary. The gift was a handcrafted birdhouse in the shape of an acorn. The message in the card was that this would be a beautiful addition to Mattie's tree. Peter and I liked that idea, and will be crafting a way to attach it to the tree, without damaging the tree in any way. So stay tuned for pictures of Mattie's oak tree with an acorn birdhouse attached!

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "As we've said so many times in this blog, children know how to grieve and how to keep alive the memory of the lost in a way that we adults no longer do. Abigail's story about Mattie and the legos resonates because it is honest and natural and reflects who they both are. I am so glad Katharina is doing well; I am sure that prayers went out on her behalf after many read about her surgery in the blog; her mother has been a stronger support to you and I know she appreciates your return assistance. I thought your sharing of Peter's story about Mattie's "signals" was lovely; it confirms what I have always believed, that no matter how well we think we know someone, another can always share a different view, a different story, some precious detail that was missed. That's why one of the greatest gifts one can give a griever is to share a story of their loved one with them. As you go through your day, I send you the strength from my practice to help you on your road. I hold you gently in my thoughts."
 
The second message is from my friend and colleague, Nancy. Nancy, "I am touched once again by your sensitivity and compassion. I heard your mixed emotions as you discussed Katharina using Mattie's chair. I sensed the sadness as you recalled the permanence of his condition. Abigail and Katharina want you to know that they think about their friend. We, adults have much to learn from our young teachers. They know that you are one of the adults who can hear them no matter what is happening for you personally. I agree with Charlie, Ann, and others that there is something special planned for you besides the tremendous courage, love, and integrity that you displayed during Mattie's illness. Peter's remembrance of how Mattie said 'I Love You So Much' especially touched my heart. They had a special bond as well. Mattie was destined to come to the right set of parents given the challenges he would have to face. Here is where I see G-d working. I believe that the Foundation will provide the families needing to go through this tunnel of illness with more than knowledge. They will have an advocate and support needed to weather their storm. I believe that your courage in sharing your story with so many people has given others the ability to withstand the pain and realities of pediatric cancer along with other loss. Grief comes in so many packages. Life requires that we open them, hopefully, one at a time. I hope that Peter and you are feeling better as we greet another week."