Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

April 2, 2011

Saturday, April 2, 2011

Saturday, April 2, 2011

Tonight's picture was taken in June of 2006. As you can see, Peter and I took Mattie for a walk on Roosevelt Island. This was practically a weekend tradition, where we would walk, talk, and explore together. Which is why, the Island holds a special place in our hearts. There we feel a connection with Mattie, and as we pass certain Mattie spots on the Island, we always pause and reflect upon that moment in time.


Quote of the day: After awhile you learn the subtle difference
between holding a hand and chaining a soul.
And you learn that love doesn't mean security,
And you begin to learn that kisses aren't contracts
And presents aren't promises.
And you begin to accept your defeats with you head up and your eyes open.
With the grace of maturity, not the grief of a child.
And you learn to build all your roads on
Today because tomorrow's ground is too uncertain for plans,
And futures have a way of falling down in mid-flight.
After awhile you learn that even sunshine burns if you get too much.
So you plant your own garden and decorate your own soul,
Instead of waiting for someone to bring you flowers.
And you learn that you really can endure...
That you really are strong
And that you really do have worth.
And you learn and learn and learn ....
With every goodbye you learn. ~ Veronica A. Shoffstall

This evening as I write the blog, I can't help but reflect on my life nine years ago tonight. Because nine years ago at this time, I went into labor (keep in mind that today is April 2, and Mattie's birthday was on April 4!). Mattie loved hearing about his birth and on Monday I will share that story with you. No woman ever dreams that the child she delivers will die before her. It is simply unnatural, gruel, and leaves one scarred for life.

I woke up this morning to this picture in my email inbox. Peter took a picture of his newest friend, RP. I gave her the name RP, short for Rwanda Puss. RP, from my perspective, is simply beautiful and has a unique beige tabby color. As some of my readers may recall, RP has befriended Peter, because Peter shares his meals with her. If Patches could see this, she would be VERY jealous.

I spent most of the day today with my friend, Carolyn, and her two children, Ellie and Gavin. Ellie was in Mattie's first preschool class, which is how I got to know Carolyn and her family. Carolyn is also our Foundation Walk Raffle chair. So today we were on a mission to complete our ten raffle baskets. I am happy to report that we were highly successful. It is a seasonal tradition for Carolyn, myself, and her children to pile in the car together and head to the Christmas Tree Shop. For those of you NOT from New England, you are most likely saying to yourself.... She has lost it, why is she going Christmas Tree shopping? Well The Christmas Tree Shop is NOT about Christmas. Instead it is an amazing variety store, that sells all sorts of things at discounted prices. Each time we go there, we spend at least three hours walking the store (which is HUGE!). I recall being there in October because I bought miniature scarecrows. The items I purchased, always help to jog my mind.
 
I had a list of items I wanted to look for and I have to say having a nine year old shopping with me was VERY helpful. Ellie knew what I was looking for, and most of the time she found things I needed that I myself couldn't find. After our shopping adventure, we all went out to lunch together. Ellie and Gavin are wonderful to eat with, because they enjoy their food, can sit still, play, and hold a conversation with us. These were skills that Mattie was working on, because eating at a table wasn't something he enjoyed at all. Nonetheless, as was true in preschool, remains true today...... Ellie and I always got along, and we always had an easy time chatting with each other.
 
When we got back to Carolyn's house, the children checked in with me to see if I would stay longer. It was very cute. Not unlike our shopping tradition, we also have a "set up a tent" tradition. Carolyn and I helped the children set up a princess and a Red Sox tent! As you can see, Ellie was inside her castle, and I was thrilled that I could actually figure out how to put this tent together. In the Fall, I had quite the time assembling Ellie's ladybug tent. It just wasn't intuitive!
 
 
 
 
 
 
 
 
 
 
 
 
 
 

As you can see this is Gavin, along with his Red Sox tent. Despite the fact that my camera did not capture him smiling, he most certainly was smiling and very happy with his new purchase. The kids introduced me to some of their neighborhood friends and Carolyn also got some time to have Earl Grey tea and chocolate. A wonderful combination!
 
 
It was a productive day, a day filled with friendships, and a good distraction for a challenging weekend.

April 1, 2011

Friday, April 1, 2011

Friday, April 1, 2011

Tonight's picture was taken in June of 2006. Peter took Mattie to a Day Out with Thomas. They did this with Zachary, Mattie's very close preschool buddy and Zachary's dad. Mattie LOVED Thomas the Tank Engine and I think we owned every Thomas train possible. Mattie and Zachary were both fascinated with trains and they could play with them for hours. On that particular day, Mattie loved the fact that he got to ride a real train whose engine looked just like Thomas!

Quote of the day: The grief sometimes gets so heavy that it's physically hard to breathe. The wound never heals. Little things -- like hearing a certain song on the radio -- just rip the scab right off. ~ Karla Stauble


I spent a good part of the day helping Ann prepare for an event she was having at her house tonight. One of the things I enjoy doing is arranging flowers and putting colors together. So we accomplished a lot today. Though Ann invited me to the party, I knew in all good consciousness there is NO way I could attend it. I couldn't see myself in a room full of people who have school aged children.  I am not in a chit chatty kind of mood, nor do I want to hear their issues, concerns, or problems. I have more than enough on my plate right now, and frankly regardless of what someone is dealing, I have to say that most people I know are not contending with the death of their only child. A child who would have been turning 9 years of age on Monday. Typically I am very empathetic and reach out to others, but there are times I just can't. Nor will I subject myself to this.

I visited Ann's mom, Mary this evening. In fact, Ann got a call earlier in the day from Mary, asking whether I was coming over to visit her for dinner. While Peter is away, I try to spend this time with Mary. I know she appreciates the company and my presence. Outside Mary's window is a glorious Magnolia tree, and it is blooming. She and I have watched this tree transform from a dormant state to its awakening. Each day we can see the blossoms unfurl and as Mary said today the flowers "make you feel alive." She captured the sentiment SO well. When you are grieving it is sometimes hard to remember that you are alive, and seeing nature can make you pause and try to find peace.

Peter is holding his own in Rwanda. He is putting in very long days, but it sounds like he is accomplishing a lot. He tells me his symptoms are getting better each day, but he hasn't lost the dizziness. It is my hope when he returns, the dizziness will remain behind in Africa. Due the time difference, 6 hours, we haven't been able to talk with each other for a few days. We email! I imagine one day in the future I will be able to use Skype through my cell phone! Until then, I am grateful for email.

When I got home tonight, I received two "how are you?" emails and one "how are you?" text message. I appreciate the thoughtfulness and sensitivity to the challenges of my week, as well as the pending and overwhelming feeling of Mattie's birthday approaching. I received an email today from Kristen, Mattie's oncologist and our friend. Kristen does not want me to spend Mattie's birthday alone, so she made a reservation for us to have dinner together on Monday. In a way, I imagine Mattie's death impacts Kristen too. I have a feeling most oncologists do not land up going out to dinner and socializing with their former patient's family. This illustrates my point about Kristen as being a very special person and doctor. But it also speaks to the power of Mattie Brown. He united people in extraordinary ways.

March 31, 2011

Thursday, March 31, 2011

Thursday, March 31, 2011

Tonight's picture was taken in June of 2006, at Lake Accotink (in VA). We took Mattie to the Annual Cardboard Boat Regatta! What a sight and experience! If you have never seen homemade cardboard boats and watched their creators try to race them, then it is definitely worth a trip! The races are for ALL ages. There are children and adult competitions. I included a link to the upcoming Regatta in June. It is a wonderful and fun day, and it is fascinating to study which boats actually stay afloat and make it through the race. It was a tradition we shared as a family, and Mattie loved all the excitement. This was something Mattie wanted to actually participate in when he got older. He was looking forward to building a boat with Peter. I also figured since baseball season officially opened today, I might as well feature my two favorite Red Sox fans http://www.springfielddays.com/regatta.html

Quote of the day: There is no right way or wrong way for grief. This is something we'll never get over. ~ Joan Bonvicini

Today seemed like a blur. I started my day back at AC Moore. One of my favorite stores! Fortunately Donna's classroom project is giving me the excuse to visit and browse there. Donna, Christine, and I were so impressed with the children's paintings yesterday, that Donna and I talked about framing them. So I was on the hunt today for inexpensive poster sized frames. As usual AC Moore did not disappoint, especially since they were having a frame sale.

I met up with Ann briefly today. We occasionally get in these moods where we just need to walk around stores and see different items, colors, and get ideas. It is shopping therapy in a way, and yet through the aisles we are usually venting about something. In fact, shopping with us isn't boring.

Several close friends seem to think that Mattie's birthday, which is fast approaching on Monday is weighing heavily on my mind. Perhaps that is the case, but in all reality, each day Mattie's loss is with me, not just on his birthday. Last year, Peter and I spent the day visiting Georgetown University Hospital (and donating 100s of toys) and planting forget me not seeds in 7 different locations (7 for the number of years Mattie was alive). This year, Peter will be in Rwanda, and somehow I am not sure how to spend the day.

I continue to battle with a headache, and frankly I just view this as my lot in life. In fact I don't know what life is like without a headache. Since I have had some sort of headache each and every day for the past 9 years. I received an email from my friend Christine today who is not happy with the fact that I live in chronic pain. Most times I just deal with it, it is only episodes like this week where the pain becomes intolerable. I function, but it takes its toll on me.

This evening, I went to visit Ann's mom, Mary. I helped her with dinner, and we chatted about all sorts of things. I noticed that Mary had a piece of painted art on her window and I asked her where it came from. Low and behold, Mary told me she made it the other day during crafts hour. I complimented Mary on the colors she chose, and her first response to me was that she isn't a good artist. Naturally after my art lesson yesterday, I wasn't going to let her sit with that comment without responding. So as we looked at her painted piece, I told her that she has an eye for color and to me her painted pear looked bright, cheery, and happy. She absorbed these comments and then said she liked the activity and that it helped the day go by faster. The beauty of art! It is therapeutic and it connects people together. Our discussion over the painted pear is the perfect illustration of that.

March 30, 2011

Wednesday, March 30, 2011

Wednesday, March 30, 2011

Tonight's picture was taken in June of 2004. Though Mattie wasn't a baseball fan, he did faithfully wear his Red Sox hat because he knew how much Peter loved this team. I can not recall why Mattie had this somewhat unhappy and serious face at the time, but something compelled me to snap a picture. Notice in Mattie's right hand was a sippy cup. That cup was practically attached to him at all times and he drank milk like it was going out of style. One would have thought that he would have grown up with the healthiest of bones. Bone cancer would never have entered my mind!

Quote of the day: At different stages in our lives, the signs of love may vary: dependence, attraction, contentment, worry, loyalty, grief, but at heart the source is always the same. Human beings have the rare capacity to connect with each other, against all odds. ~ Michael Dorris

Thanks to Patches, my cat, I had the worst night of sleep possible. She basically was howling throughout the night. At 2am, it was so loud, it woke me up and I couldn't get back to sleep. So I was operating today on very little sleep and with a migraine.

Despite the start to the day, the first kindergarten art session was a HUGE success. I was fortunate to have my friend Christine (Campell's mom) helping us in the classroom. With Donna (the teacher), her assistant Ashley, Christine, and I, there were four adults to 15 children. It provided the right amount of supervision and guidance for the hands on activity.

We covered a lot of territory today. I started out the morning by asking how many children viewed themselves as artists? With a show of hands, only about four children responded positively. I had several messages that I wanted to get across today, and they were: 1) There is an artist within all of us. If we understand shapes, colors, and use our imagination, then art is possible. 2) There is NO right or wrong way to create art. 3) We all have our own feelings and thoughts, which make us unique. Therefore the art we create is also unique and special because of our own perspective we bring into it. 4) Certain colors evoke certain feelings for each of us. However, we may not all react the same way to a certain color, and this is once again due to our unique feelings and how we learned to associate certain colors with certain feelings.

The children had the opportunity to see color and feelings operationalized in two ways. I taped a color to Donna's back and then one to Christine's. Neither adult knew which color I taped to her. I then asked the children (who could see the color) to help Donna and Christine figure out which color they had on their backs by describing how the color made them feel. Based on the feeling descriptions the adults had to guess the color on their backs. What this exercise proved was that we all associate a color, like red, with an emotion. However, the emotion or the feeling was NOT the same for each child. Some viewed red as happy and excited and others viewed it as angry and mad for example. This exercise set the tone for the day. Which was, we all enter the classroom with our own feelings and perspectives. We respect those differences and can appreciate how these differences influence the art that we create.

I then read to the children the wonderful Dr. Seuss book entitled, My Many Colored Days. Dr. Seuss did a wonderful job of associating colors with feelings, and at the end of the book, it is illustrated that we all have a rainbow of colors (or emotions) within us. Some days certain colors are more pronounced than others.

I provided the children with a powerpoint presentation of pictures of Picasso, a Map of the World, so they could see where Spain (Picasso's birthplace) was located, a Spanish Flag sticker so we could pretend to be transported to Spain, and many many wonderful child friendly pieces of Picasso art work. I explained to the children about Picasso's blue and rose periods. They found this fascinating, especially the reasoning for these periods. During Picasso's blue period, he painted everything in blue because he was sad. He lost his closest friend in life (through suicide, I did not explain that to the children!), and then a year or so later, he met and fell in love with his first girlfriend, and this transformed his emotions, and in essence his painting to the Rose period. I also explained to the children that Picasso was one of the founders of the artistic style known as cubism. Cubism is a style of painting that does not look like real life. Instead the people and objects are painted using geometric shapes, such as cubes, circles, and triangles. In addition, the people or objects in the painting are shown from many different points of view all at the same time.  This is a hard concept to grasp, but with many examples, the children quickly got it. In fact, they were excited, animated, and engrossed in the art. They were standing right beside me, pointing to things they saw in the paintings, and were making relevant observations.

The children then had the opportunity to do a hands on activity. With Peter's help, we transposed the actual outline of a Picasso painting onto four different poster boards. There are four tables within the classroom and each table had a board to paint on.  Here is the bare bones outline I provided the children. I did not tell them the title of this painting, nor did I tell them the subject matter. Their job today was to work collaboratively at their table and paint in the shapes they saw on the poster board. This exercise was to help them understand cubism and to see that art is about shapes and colors.

 










After the children did their paintings, I then revealed to them the actual painting that coincided with the outline. I did not want to influence their art before they painted! Picasso entitled this painting a Woman in a Hat. Again, you can see that he depicted this lady in geometric shapes and in typical cubist fashion this woman doesn't look real. Also he captured this woman at various points in time all in one picture. Since most of us can't look at something straight on with our eyes and have a moon shaped mouth that appears sideways. So as Picasso was so good at, he used his imagination and combined what this woman would have looked like straight on (eyes forward) and what she would have looked like with her head tilted sideways (mouth sideways).  
The next four paintings were generated within the classroom today. In so many respects, I believe Picasso would have been proud of the children and what they accomplished.



















I think the children are VERY ready to learn about Matisse next week. Since they captured Matisse's vibrant colors within a Picasso piece of art.





















The children had to work together as a team of four to paint this poster board. That involved listening, communication about which piece of the board each one wanted to paint, and collaboration. After all, we had four budding artists sitting at each table, and each one had his/her own ideas about how to color in the shapes. Working as a team can require great skill, and I am happy to report that with guidance the children were able to successfully complete this project.














What I observed is that a group art assignment reduced the competition and uneasiness that can typically happen with art. It is natural to feel intimidated or inadequate as an artist, as we compare our work against others. But since the children had to work together as a table, there wasn't that much time for competition and for checking out what the other tables were designing. Instead, the art was coming from within rather than from observing what others were doing and adopting that style.

The first session ended back in a circle. I gave the children homemade empanadas (dough stuffed with apple and cherries), trying to stick with a Spanish theme of the day! Each child then went around and shared a thought about what he or she learned from the session. The responses were priceless and captured exactly what I was hoping which is art is fun, we are all artists, art is about color and shapes, and we can work together with friends to create art! Excellent, I was thrilled to hear these responses. Then each child came up to me, shook my hand and said thank you in their own way to me. In a way, I wasn't expecting this, but this was a very tender gesture. Holding the hand of a six year old instantly reminded me of who I was missing in my life.

As the children left the room to head to science class, Christine and I were introduced to this fascinating technology called Voicethread. With Voicethread you can capture voices and share them over the Internet. Our goal is to interview the children about their art and use this technology. Christine and I practiced today and Donna sent me our practice link below. When you click on the link, you will hear three things. The first is a portion of the session that Donna actually video taped of me talking to the children. The second part is a question I posed to Christine, and the final part is Christine's response. Christine worked hard at her table, and the observations she made as she helped the children with this assignment were exactly what we were hoping to accomplish!

http://voicethread.com/#q.b1892612.i0.k0

A VoiceThread is an online media album that allows a group of people to make comments on images, videos, and documents, really simply. You can participate 5 different ways - using your voice (with a microphone or telephone), text, audio file, or video (with a webcam). It's easy to control who can access and comment on a VoiceThread, which makes it a secure place to talk about almost anything: business and academic presentations, travelogues, family history, art critiques, language study, tutorials, book clubs and digital storytelling. A VoiceThread allows an entire group conversation to be collected from anywhere in the world and then shared in one simple place.

March 29, 2011

Tuesday, March 29, 2011

Tuesday, March 29, 2011 --- Mattie died 81 weeks ago today.

Tonight's picture was taken in June of 2004. I wasn't always able to capture these quiet and serene times, mainly because Mattie was a child with a lot of energy and was always active. But these tender and relaxing moments did occur in our lives, and I am so happy I photographed them. It is week 81 and counting and the feelings of grief remain with us each and every day.

Quote of the day: Grief is a process, not a state. ~ Anne Grant

I woke up this morning with a full blown migraine headache along with a severe allergic reaction. This reaction impacted my eyes, which have been swollen and tearing all day.

While sitting down at my kitchen table this morning (a space that I simply love, maybe because in the 15 years we have lived in our home, I never sat in the kitchen before) I was glancing through The Washington Post. On the front cover, I saw something that caught my eye. An article that had to do with nurses and the impact they make in a patient's life. In this particular case, the article featured the care nurses provided to President Ronald Reagan on March 30, 1981, the day that Reagan was shot. On the 30th anniversary of this national tragedy, this article was written to illustrate the long lasting connection between nurses and their patients.

As I was reading this article, I was deeply affected by the words and sentiments. What Mr. Wilber was able to capture was the fears, the emotions, and the existential issues that arise when one is rushed to the hospital. These emotions are universal, and though Ronald Reagan was the president, he too was frightened, in pain, and questioned whether he would live and what his future would hold. What made this story very poignant was the revealing truth. When patients need compassion, understanding, a hand to hold, and the truth about their condition, guess who they ask? They ask a nurse! Doctors tend to be too busy, and many of them are not comfortable interacting on a very human and emotional level. Certainly I am generalizing since we were fortunate to have Aziza and Kristen providing Mattie's medical care. But the reality is that nurses are there around the clock and are addressing the moment to moment concerns of their patients. This can provide for very intense times together. However, how Ronald Reagan felt about his nurses, is how I feel about Mattie's nurses. Nurses are remarkable people, and in Mattie's case, women I will never forget.

Mr. Wilber's article had me in tears by the time I finished reading it. In fact, I was so moved by his words, that I emailed him today! Not something I would typically do. I have attached a link to the article below in case you would like to read it for yourself.

========================================
The Washington Post Article:

30 years later, nurses recall their role in saving Reagan’s life by Del Quentin Wilber
http://www.washingtonpost.com/national/30-years-later-nurses-recall-role-in-saving-reagans-life/2011/03/22/AFQmuXqB_story.html?hpid=z11
=========================================
 
Peter and I have been emailing back and forth today. He is still dizzy, but he reports that his symptoms are improving ever so slightly each day. He did share a cute story, which I am passing along to you. I am NOT the only one in the family who is an animal lover. Cats have a thing about Peter. In fact, there is a cat at his hotel in Rwanda who has adopted him. This tabby cat comes to visit Peter every morning and evening. You want to know why? Because Peter shared part of his breakfast one day with the cat, and as any cat owner knows, cats are VERY smart. This tabby has sized Peter up, and realizes if it wants to eat, sticking close to his buddy is a good plan. Meanwhile, Patches, our calico, is driving me absolutely crazy. She misses Peter and acts out when he isn't around. I wouldn't think such a thing was possible, and most likely you are reading this and saying..... what on earth is she talking about? But you have to trust me on this, her behavior is beyond challenging.

This afternoon, I met up with Ann. However, my eyes are so swollen and my head hurts so much, I couldn't even see her at the place we met for lunch. I heard her voice, and followed the sound until I found her. Ann took one look at me, and was stunned with the look of my eyes. My plan is to go to sleep early tonight in hopes that rest helps how I am feeling.

Later this afternoon, I ventured over to Mattie's school and met with Donna (one of the kindergarten teachers at the school). I will be visiting Donna's classroom tomorrow for the first session of Picasso and Matisse. Donna and I have had a good time chatting and planning these sessions together, and it is my hope that I can pull this off tomorrow. I will give you a detailed account of what we do tomorrow. But in a nutshell, the goal is to talk about colors and feelings and how they tie into art. In addition, I will be covering the life and some of the child friendly works of Picasso. The children will then have the opportunity to explore cubism (since Picasso is one of the founders of this art form) with a hands on activity. Stay tuned for more details.

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, "Thinking of you both and always thinking of Mattie this Tuesday and every day."

The second beautiful message I received is from a parent of a child treated at Georgetown University Hospital. Amy saw us many times while Mattie was undergoing treatment, however, I unfortunately never met her in person. She and her family are coming to this year's walk and I look forward to meeting her in person. However, Amy writes to us often and has been incredibly supportive. When I asked her whether it was okay to post her comments on the blog (of which she reads faithfully), she said she views the blog as a safe and sacred place. I am honored by her comments and her reflections. Amy wrote, "I am a faithful reader of your online journal. Your words never fail to move me, and I so enjoy the photos of beautiful, gorgeous Mattie. I am continually amazed by you and Peter and the way you manage to continue to honor your son and channel your grief in so many important ways AND HELP OTHERS!, although I know you certainly never asked for such a role. I cannot imagine the pain of losing Mattie. I think you communicate an important message to your readers when you articulate that one does not "get over" such a tragedy- nor should one be expected to. You will have prayers, support, strength and positive energy sent your way for as long as you need it! And know that your boy is not and will not be forgotten! I think of him every time I go to Gtown even though I never had the sheer pleasure of meeting him. I think that parents who go through medical challenges with their children share a bond and connection that others can't begin to understand, just as I can't begin to truly understand what you face every day. As soon as I saw the photo of Peter in the Washington Post, I recognized him instantly from our days in the PICU and was crushed to read that Mattie had passed away. Thank you so much for sharing your insights, wisdom and experience so honestly in your journal. I am a nursing student, 4 weeks from program completion, and I read your words also from that perspective - you are helping me understand and grasp how I want to relate to families and parents in the future, as I intend to focus on peds."

March 28, 2011

Monday, March 28, 2011

Monday, March 28, 2011

Tonight's picture was taken in June of 2004. Unlike me, Mattie loved the rain, and as you can see that day, he insisted that we go outside in it! So out on the deck we went, with umbrella in hand. When I look at his sweet and innocent little face, it is hard to imagine and accept that he is gone.

Quote of the day: Grief can't be shared. Everyone carries it alone. His own burden in his own way. ~ Anne Morrow Lindbergh

Lindbergh's quote is quite true. Grief can be felt and shared by others, but one's own personal feelings about a loss are unique. I do agree, that I do share my grief alone, because at the end of the day it is me who is home alone surrounded by Mattie's things and with memories of a 24 hour a day, 7 day a week battle against osteosarcoma. Others may have walked this journey with me, and for that I am grateful, but Mattie was my son, and the loss of his presence in my life will naturally affect me now and it will affect my future.

I feel as if I am starting this week out on a major deficit. Dealing with Peter's illness last week wiped me out. The worry from that alone took its toll on me, and I feel like I am juggling so many things. As Peter wrote to me today, he could tell that I was in a "funk." I just feel very tired and have an intense headache which makes keeping my eyes open challenging.


Peter is holding his own in Rwanda, but still isn't feeling back to normal. I am happy that despite the time difference, we seem to be able to connect through email, and can share aspects of our day with one another. However, Mattie's cancer and death has caused me to feel very uncertain when Peter travels. Life has shown me that the unexpected can happen and does happen. I never imagined my six year old would develop cancer and die, but it happened. So when Peter travels, I worry that something could happen to him too. Cancer has shown me how fragile life is, and as I say all the time, cancer is a lifetime diagnosis, that not only impacts the patient, but the entire family system. Even though our cancer battle is technically OVER from a medical standpoint, from a psychological standpoint it VERY much exists and is ever present.

March 27, 2011

Sunday, March 27, 2011

Sunday, March 27, 2011

Tonight's picture was taken in June of 2004. One of Mattie's favorite toys was Mr. Potato Head. As you can see, Mattie was walking around the house with Mr. Potato Head's glasses. Every time Mattie did this he absolutely cracked me up with laughter. Mattie had a very funny side to him. However, he never had to work on being funny, it just came to him naturally.


Quote of the day: Every loss for each family is unique and personal, ... The personal loss within my family has helped me experience the grief and loss that families go through. But one can never put one's self in another's place. Each family's loss and situation is unique. ~ James Kramer


When Peter goes away, it is not only I who miss him. Our cat, Patches, literally pines for him. Patches loves and identifies with Peter, and I am the utility player in the animal relationship! When Peter goes away on travel, Patches literally becomes unglued. She howls at all hours of the day and night, and like clock work she wakes me up by 5am. I try to ignore her, but she makes it very difficult to do this. Patches is a very challenging cat, and it may explain why her previous owner shot her with a BB gun and abandoned her on the streets of Washington, DC before she was one year old. When she landed up on our doorstep, she found the right owner, since I am used to dealing with emotionally challenging situations.

I had the opportunity to talk with Peter today using Skype. Skype is a software application that allows users to make voice calls and chats over the Internet. Calls to other users within the Skype service are free. It is hard to believe that I was talking to Peter through the computer, hearing his voice, and he sounded like he was in the room next door. After traveling for 24 hours straight, I was thrilled to hear that Peter actually slept last night. He is holding his own symptom wise, and it is my hope with each day, he will experience slight improvements.

Despite our geographical distance apart, we were still working on Foundation items together, and all I can say is thank goodness for technology. It makes staying in touch so much easier, even when we have a six hour time difference separating us.

This afternoon, I also had the opportunity to talk with Toni, Brandon's mom. As my faithful readers know, Brandon was Mattie's big buddy at the Hospital. Toni and her family just got back from a trip to Ireland. She told me while there they felt as if Mattie was somehow present with them. As they were touring around by car one afternoon, they were flipping through radio stations, until all of a sudden a song came on which made them stop in their tracks. I know many of my readers are saying right now...... I KNOW WHAT SONG CAME ON!!!! Sure enough, ABBA's Dancing Queen was on the radio, Brandon and Toni's thoughts were immediately taken back to the fifth floor of the Hospital doing physical therapy with Mattie in the hallways. Toni said this happened on St. Patrick's day, when most of the radio stations were playing Celtic music, however, not this particular station. It instead was playing Mattie's theme song! Also one night as they were touring around Ashford Castle, Toni said it was literally pitch black outside. Except for a very brilliant moon. But this big moon seemed to have a halo around it. Toni said that Brandon turned to her and said, "look mom, there is Mattie again." For so many of us deeply touched by Mattie, we can't hear Dancing Queen without thinking of him, and we can't look at the night sky without thinking of our courageous and precise Mattie Moon. I so appreciated Toni's stories and to hear just how much Mattie impacted her family.

Later today, I went to visit Mary, Ann's mom. We chatted throughout the afternoon, looked at a family album, and I helped her with dinner. The photo album we looked at was very special and it helped to jog her memory about the various occasions in her family's life. Of course, as I was absorbing these pictures I also realized many of the milestones reflected in these pictures I will never experience with Mattie. They are very difficult and sobering realities.

This evening as I said good-bye to Mary, she seemed concerned about me, because of the simple fact that I was going to be alone for two weeks. I did not have to say anything, Mary is good at putting two and two together, and realizing with Mattie and Peter gone, I have no family in DC. That notion she found upsetting. I try not to focus upon it, or discuss it with others, because sometimes my reality isn't always easy to listen to. But Mary is able to verbalize the reality and like me, she is also able to dislike it.

I would like to end tonight's posting with a message I received from my mom. My mom wrote, "Read all about your visit to the Senate and the compliment you received from Brett about your performance comparing you to a professional lobbyist. Why am I not surprised?? You often go out on a limb to tackle amazingly challenging tasks others would not dream of attempting for the daring and daunting nature of their scope. It's what makes your readers breathless for the next installment of the blog and keeps them in awe of your passion for your cause. Why does it have this effect? Readers not accustomed to living on the edge of disaster think that not ever in their wildest dreams could they pirouette like you out on that delicate and fragile branch that you do so willingly to achieve a goal for love. It is a mother's love that emboldens you to cry out to a public that must be awakened to the tragedy you have lived so that you can do justice to Mattie's memory and as important, his lasting legacy in life."

Saturday, March 26, 2011

Saturday, March 26, 2011

Tonight's picture was taken in June of 2004. Mattie was in Boston visiting Peter's parents, and that particular day we stopped by their local pond to feed the Canadian geese and ducks. Mattie and I both loved the geese and ducks, and we had a whole strategy about which goose or duck should be fed first.  


Quote of the day: The grief they have experienced has made them more empathetic to the grief of others. ~ Bill Doyle


I am happy to report that after almost 24 hours of travel, Peter arrived safely in Rwanda. He reports that his flights to Brussels and then to Rwanda were smooth and not over booked. His symptoms remain about the same, but I am so happy that the long travel did not debilitate him further.

I spent a good portion of the day running chores. In the later part of the afternoon, I went to visit Mary (Ann's mom). Mary has been very worried about Peter, and in essence me. She was anxiously awaiting to hear whether Peter landed safely, and while I was visiting her, Peter emailed me to let me know he was okay. Mary was thrilled to be able to hear this good news directly.

This evening was Mattie's preschool's annual auction. I went last year, and also felt compelled to go tonight. I will never forget Mattie's preschool and his positive experience there. Those two years could have been the happiest in his life. He developed amazing skills and self confidence at this school, and in so many ways, Peter and I would have been lost without the support from Resurrection Children's Center and St. Stephen's and St. Agnes School during Mattie's cancer battle. To me, these are amazing schools and communities.

I went to the auction with Ann, and though we do not talk about this outright, I know she is aware of the fact that it is hard for me to be in a room filled with parents of preschoolers. Many of these parents I knew from when Mattie attended school. Typically what unites parents in conversation is their children. Naturally this makes chatting with me a little more challenging. In a way, it is almost like being a mom happened in another lifetime for me.

Each year at the auction, they show a video of the children in each classroom. Just like last year, I left before the showing of that video. Ann and I went out to dinner together, and then returned at the end of the evening to claim the items we bid on and won. Peter and I won a get away weekend in October, and I am happy that we can take this much needed break together. I actually felt guilty for winning this item, since I knew there was another couple who wanted this package as well. However, as Ann reminded me, we deserve a vacation too. In so many ways, after Mattie died, I feel we no longer are entitled to anything. It is an interesting mindset and dynamic. Peter gets a kick out of watching me at auctions, and tonight I wouldn't have disappointed him. Mainly because I turn into another person. A person who is outwardly competitive and when I get my mind set on wanting to win, I can become persistent and tenacious.