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

January 22, 2011

Saturday, January 22, 2011

Saturday, January 22, 2011

Tonight's picture was taken in September of 2002. Mattie was five months old. As you can see Mattie was eating rice cereal in his car seat. The irony of Mattie was he strongly disliked sitting in his car seat for the most part. But there were two exceptions to this rule. He loved to eat in his car seat, and did that until he grew too big for the seat. The second thing we used the car seat for was for him to sleep in it at night. Mattie did not like his crib and he did not like lying flat. He preferred sitting up straight to sleep. So literally I would put him in the car seat, and stick the car seat in the crib. It was a process, that probably looked ridiculous, but I frankly did not care. I would do just about anything for him to sleep, and practically did. As a first time parent, I had no idea how Mattie was going to take to solid foods. The first food we tried him on, like most parents, was rice cereal. Mattie absolutely LOVED it, and he soon moved onto baby oatmeal. Mattie fell in love with oatmeal from the moment he tried it, and from that point on, Mattie ate oatmeal each day of his life until he developed cancer.


Quote of the day: He that conceals his grief finds no remedy for it. ~ Turkish Proverb


I have spent a great deal of time concealing my grief. It hasn't been on purpose, it just happened that way. I believe that Mattie's death was so traumatic, that I spent several months right after his death absolutely numb, almost robotic like. After that point, the reality of the loss has slowly crept its way to the surface. But I most likely have great defenses built up, because truly letting go could be too painful to come to terms with. However, consistent with this week, I continued crying today. But just like on Tuesday, today's crying episode did not happen at home, I was at Mattie's favorite restaurant.

As my daily readers know, I went to Mattie's restaurant yesterday with my friends, and today I returned with Peter. The general manager of this restaurant naturally knows us because of the frequent nature of our visits. Remember my parents and I started taking Mattie to this restaurant when he was a preschooler. So we have been steady customers for at least six years. However, when we entered the restaurant today, we were on a mission. I had a pad of paper with me and Peter had his laptop. We were there to work through lunch and talk about Foundation items. Peter knows that food is a good motivator for me, and I typically will become more animated about just about anything while eating.

As we were ordering, the general manager came over to chat with us and he wanted to know what we were working on. He knows about Mattie's Foundation and he definitely knows about our annual Walk. In fact, when the 2010 Walk was over, he reminded me not to forget to ask for the restaurant's support for the 2011 Walk. So today as soon as we mentioned we were planning the Walk, the first thing out of his mouth was.... "how can we help?" Peter and I did not come prepared for such a conversation, but together we brainstormed ideas, and I was truly moved by the generosity shown to us today. I will reveal more details as they unfold.

The general manager was telling us that he has three daughters, and he couldn't imagine losing any of them to cancer. In fact, he said that if one died, he doesn't think he could go on living. I actually was intrigued by his response, because it was very sensitive and most definitely an accurate feeling that Peter and I live and battle with daily. He went on to say that sometimes his own family members complain about life's difficulties or daily nuisances. However, he is able to put these things into context for them. He tells them that they all have their health and with that all other problems have a solution. He learned to have this philosophy in life, and to appreciate the true priorities in life from watching Mattie battle cancer, and of course watching us have to survive this torture.

This whole conversation stopped me in my tracks today. Mainly because this is not someone I have spent a great deal of time talking with, yet I was taken and captivated by how Mattie has changed his life. I would imagine Mattie's life has affected those closest to us, but it isn't until I hear stories like this today, do I realize Mattie's life was like a ripple in a vast sea of people. Mattie created change in others, and he was only seven years old. As our conversation ended with the general manager, I was overtaken by the sentiments and his contributions to our Walk, that I started crying. Peter handled that well and then found a way to humorously pull me out of crying, because sometimes if I start, I can't stop, and that would have been the end of lunch and of our productive meeting.

Needless to say, we brainstormed several ideas for the Walk and then chatted about so many different things. We even landed up talking about all the places we have visited together. When I got home this afternoon, my productivity continued and I was able to knock out some things on my Walk "to do" list that I wanted to have completed before Monday.So it was a Saturday filled with many emotions, and yet a day where I solidly could see and feel that Mattie is being remembered. He is not forgotten.... being forgotten would be just as painful as losing him in the first place.

January 21, 2011

Friday, January 21, 2011

Friday, January 21, 2011

Tonight's picture was taken in June of 2008. A month before Mattie was diagnosed with cancer. Life seemed easier then, or perhaps I was just naive. Peter and I took Mattie for a walk on Roosevelt Island that weekend. Peter snapped a picture of us at our favorite location on the island. Right by the boardwalk. Mattie did not come alone though. In his hand, he was carrying Lightning McQueen (the toy car). That was his favorite toy at the time, and it came everywhere with us! It is hard to believe that I still have Lightning McQueen with me, and I can even locate the clothes and sandals Mattie was wearing that day in our closets, yet we don't have the boy with us. I have a feeling most parents do not hold onto toys, clothes, and objects like we do. But then again, maybe you would if you knew this was all you had left of your child.


Quote of the day: There is no grief like the grief that does not speak. ~ Henry Wadsworth Longfellow


I had the wonderful opportunity today to go out to lunch with Denise and her daughter, Marisa. Denise and I met in graduate school, and we are now friends and colleagues. Both Denise and Marisa became part of Team Mattie and I met Marisa in particular when she offered to help me care for Mattie when he was home from the hospital between cancer treatments. Keep in mind that Marisa was in high school at the time, and was being asked to care for a child with huge needs. I never went far from home, but it did give me moments to escape for brief respites.When I reflect on what Marisa did back then, am in awe. Mainly because when I think of myself at Marisa's age, I am not sure I could have taken on such a large challenge. But Marisa's involvement did not end there. She has been very involved in each of our Mattie Walks, and has run the bake sale at the Walk two years in a row.

Marisa is now in college, and today I got to hear about her educational experiences, living in NYC, and her plans for a term abroad. Yet despite her busy schedule and other commitments, she still wants to participate in this year's Foundation Walk. Amazing! We had lunch today at Mattie's favorite restaurant, and being there just reminded me yet again of the connections Mattie has helped me make in my life.

Peter and I chatted over dinner tonight about his experience attending a shiva. "Shiva" literally means seven. In Judaism, a person mourns for a relative in stages. The first, most intense stage of mourning lasts for seven days from the funeral.

Peter befriended a man this year who was slowly losing his daughter to brain cancer. Though connecting was challenging, Peter continued to be a wonderful support for this father. It was hard because Peter was helping a man whose child was still alive, and yet Mattie was dead. So in a way, Peter was ahead of the learning curve, yet never placed his own thinking, feelings, and two cents onto this other dad. This takes great restraint, because the natural thing to do when you just lost your child is to talk about your loss. It is hard to focus upon someone else's trauma and pending loss. But that is what Peter did. Peter shared insights with this other dad over the course of this year, which I think helped normalize how this man was feeling and thinking. While at the shiva, Peter's friend let him know that it is already "happening" to him. I was confused by this statement, until Peter explained it to me. Peter told this man that when Mattie died, people said things to us that were greatly hurtful. It certainly wasn't anyone's intention to hurt us, in actuality, I imagine people said these things to make us or themselves feel better. Such things as, "it is time to MOVE ON," or "DO YOU FEEL BETTER YET?" As my faithful readers know, these are MAJOR no no's to say to a parent who lost a child. Because the newsflash is WE WILL NEVER MOVE ON and it may take a lifetime to FEEL BETTER. If that is even possible. The irony is Peter was hearing his friend reflect back everything he said to him months before. Mainly because these things are NOW happening to him! Before Peter left the shiva, this man's wife, came up to talk to him. She wanted Peter to know that he has and continues to make a difference in her husband's life. I was truly proud of Peter, because it takes great guts and great sacrifice to try to reach out and help someone struggling with the same concerns and deep pain.

This couple is now struggling with many of the things Peter and I contend with. Their greatest fear is that their daughter will be forgotten. They also acknowledge that they have learned a lot about their support network through this process. The irony is when cancer strikes you learn a lot about people in your life. Those people in your life who you think care for you and will be there for you through the thick and thin, may not be. At the same time, those you may not have known as well, rise to the occasion, and from this heart wrenching journey together, you are bound together in a special way. There is clearly no guide book to grieving, but I do think, as tonight's example illustrates, parents who have lost a child do need to hear from other parents who share their experience. It doesn't ease the pain, but it helps normalize it. Otherwise, there are times when you can literally feel very unstable and misunderstood by the world around you. 

January 20, 2011

Thursday, January 20, 2011

Thursday, January 20, 2011

Tonight's picture was taken in September of 2006. Mattie was four and a half years old and in preschool. This was one of our many weekend adventures on a nature trail together. There were moments during our walks when Mattie would get tired, and would immediately run to Peter to be carried. You can see the smirk on Mattie's face here, which indicated that I caught Mattie on camera making a convincing case to Peter as to why he needed to be carried. Mattie was smirking and Peter was almost laughing after hearing what Mattie was saying to him! Not sure you would have understood the full dynamic of this picture unless I explained it to you.  

Quote of the day: Tearless grief bleeds inwardly. ~ Christian Nevell Bovee

On this day, 17 years ago, my maternal grandmother died. I grew up in a multigenerational household, since my grandmother lived with my parents. She and I were very close to each other. My grandmother was a very kind, compassionate, selfless, and giving individual. When I was in college she suffered a massive stroke which left her partially paralyzed and with a change in personality. She never regained the ability to walk, read, care for herself independently, and her memory was greatly affected. My mom was her primary caregiver, which was not an easy task by any stretch of the imagination. In fact the role was so taxing that my mom became severely sick, and landed up in the ICU for weeks. We weren't sure she was going to survive, since her body was in septic shock, and each of her organs were shutting down. Watching my mom care for my grandmother was an enlightening experience cognitively and emotionally, so much so, that by the time I entered graduate school, I felt inspired to research and investigate the stresses associated with caregiving for an impaired older family member. I have no doubt that my mom worries about me because she knows the the long term impact intense caregiving has had on her life.

Though 17 years may seem like a long time,  it really isn't. I can recall the closeness I had with my grandmother, I can see her green eyes, pretty face, and remember many of her loving ways. What I also remember is the day she died. I was living in Boston at the time, and found out the news early in the morning. I recall waking up that morning to the sound of the telephone ringing. However, even before answering the phone, I already knew my grandmother had just died. I knew because in my dream, my grandmother and I were together. I can still vividly recall in the dream that she handed me a dozen red roses and when I reached out to take them, the roses lost ALL their petals and died. The dream was so shocking, that when I woke up I wasn't sure what startled me more.... the image of the roses dying or the actual phone ringing. Needless to say, my mom was at the other end of the receiver and she called to tell me my grandmother had died. Somehow I knew that already!

There is probably no coincidence that on some level I decided to spend the day with Ann's mom. My lifetime friend, Karen, told me about a year ago, that Mary (Ann's mom) on some level reminds me of my grandmother. When my grandmother was ill, I wasn't able to assist my mom with her care. I was in college and then graduate school on the East Coast, and my parents and grandmother were in Los Angeles. Karen jokes with me that I am trying to make up for lost time. Or time I wished I had with my grandmother when she was ill. I never paid much attention to Karen's thinking, well perhaps until today. I certainly wanted to help Ann, but I do think my time with Mary today made me reflect upon my grandmother.

Spending time in an assisted living facility is eye opening. In fact, Kristen, Mattie's oncologist and our friend, wrote a comment to us on Tuesday, that has stuck with me all week. She said she knew Peter and I as we were caring for Mattie with cancer. She did not know us as a family before Mattie got sick. However, now that she is reading the blog and understands our love and connectedness prior to cancer, it makes the memory of Mattie's battle and death much more painful. That is actually a profound comment. Because as I was sitting in the assisted living facility today, all I could think of was that every older adult there was once a young and vibrant person. They all have histories, they were all productive people in our society, and yet those who care for them sometimes forget that. I think this is such an important lesson for all of us, that we should never overlook those in front of us. They are not just older adults, patients, or clients. These are people with rich histories and lives, and this isn't hard to remember or learn about....... we just need to be willing to take the time to slow down and listen.

January 19, 2011

Wednesday, January 19, 2011

Wednesday, January 19, 2011

Tonight's picture was taken in January of 2006. Mattie was almost four years old, and was in preschool at the time. In front of Mattie, you will see the gingerbread houses he and his classmates decorated in preschool that day (gingerbread houses that I made and assembled by hand). He was very excited that he got to take home the finished products! What captured my attention about this picture, was the purple balloon Mattie was holding! Some of you may recall my story over Christmas time about the purple balloon that magically appeared on our deck. In the cold of winter, we never expected to see a purple balloon just sitting out there, right next to Speedy Red. But there it was. Peter actually brought the purple balloon into our home while I was in California. Needless to say this purple balloon is still inflated in our living room, and just sits there looking at us. It seems very ironic to me that I would spot this picture tonight, and what are the chances out of all the balloons that could land up on our deck, it would be a purple one?!

Quote of the day: Death ends a life, not a relationship. ~ Jack Lemmon



Though I considered Jack Lemmon a wonderful comedic actor, his quote is quite serious and very meaningful. Mattie's death ended his physical presence in our lives, but the fact of the matter is he is my son, and will always be. That relationship began the moment I found out I was pregnant with him. I still recall the first sonogram picture I had of Mattie. The ironic part was his profile in the sonogram picture matched the real boy who entered the world months later. Peter and I fell in love with just a sonogram picture, and even though it is almost nine years later, I can distinctly recall that we plastered that picture everywhere in excitement. Sorry, I couldn't help it! I posted it here too!


Today turned out to be a day I hadn't quite expected. Mainly because by the end of the day I was actually productive and focused. When I stepped outside today, it was warmer than it had been for days. Not the kind of day I was expecting in January. I met up with Ann and we actually walked and shopped in Old Town Alexandria. Which is a very charming area, on a good weather day. During our journey, we stopped for lunch, and as we were talking, Ann happened to look outside and then motioned to me to look out the window. Passing right by us was Katie, Zachary's mom. Zachary was Mattie's closest preschool friend, they were inseparable together. Katie came inside the restaurant and we all had a good time chatting and catching up. Talk about chance occurrences.

At lunch, Ann asked me about the upcoming Mattie Miracle Cancer Foundation Walk. This dialogue got me talking about the ideas Peter and I have been brainstorming, and basically by the time I finished, Ann was strategizing how these ideas were going to get addressed and brought to life. I sometimes can get bogged down with thoughts and feelings especially as it relates to events honoring Mattie's memory. However, in Ann's subtle (or not so subtle ways), she enabled me today to take one step forward, which was what I needed to get started. By the time I got home this evening, I had a lot to talk to Peter about, and then began sending out e-mails and connecting with others. Others, are key, because Peter and I can't do this Walk alone, and fortunately we have a team of incredible people and friends to turn to. So I began the process tonight. Needless to say, when I left our home today, I did not imagine I was going to come home this motivated.


I also received two lovely email messages, that made me smile and I wanted to share them with you. A fellow elementary school mom, Sue, emailed me the other day. Sue was active in Team Mattie and is active in our Foundation. She has served as the co-chair of our children's activities at the Walk for the past two years. Sue wrote, "I just want to touch base and let you know that the SSSAS Brownie troops (2342 which is made up of Mattie's 3rd grade classmates, and troop 3969 which is the 2nd grade troop) have chosen the Mattie Miracle Cancer Foundation as one of the recipients for proceeds from our cookie sales. The girls are excited to sell cookies knowing that a portion of the proceeds will benefit Mattie's foundation."

The second email was from my friend and colleague, Susan. Susan visited Mattie many times in the hospital, and she understood him. Susan became famous in Mattie's mind for bringing him excavation kits in the PICU. Mattie transformed his hospital room many a day, to dig for plastic dinosaur bones! Susan wrote, "OK I don't know the significance of this, but thought I'd pass it along...I was coming home today along GW Parkway and just as I got to Roosevelt Island what should come on the radio??? Dancing Queen by ABBA. I have to admit that Mattie wasn't foremost on my mind there. I was singing along when ZONK I realized why the song hit me (I remember dancing down the hall with Mattie during PT with this blaring on the radio) and then ZONK again...there's Roosevelt Island. I don't claim that Mattie sends me messages per se, but maybe he wanted you to hear from a different source about about him."

January 18, 2011

Tuesday, January 18, 2011

Tuesday, January 18, 2011 -- Mattie died 71 weeks ago today.

Tonight's picture was taken in February of 2004. Mattie was about 2 years old. What you can't see from the picture was our deck was covered in SNOW. Mattie desperately wanted to go out and play in the snow, and so I dressed him up for his outting. Peter was heading outside with him and I was most likely still in my pajamas and hiding behind the door, so as to not get photographed. As you can see from Mattie's expression, he was partly fascinated and partly not sure he wanted to go outside. Needless to say, Mattie did venture out, and what he most loved about the snow was his ability to build and create with it! 

Quote of the day: When he shall die
Take him and cut him out in little stars
And he will make the face of heav'n so fine
That all the world will be in love with night
And pay no worship to the garish sun. ~ William Shakespeare


Today was a HARD day. The night before it snowed in DC, or I should say there was freezing rain, so schools were closed and most things were operating on a delay. However, I did get up and debated greatly as to whether I should go out or just stay home. I have been dealing with a migraine headache that has left me feeling very debilitated and sick to my stomach. However, I wanted to find a new book of quotations to use for the blog, so I was compelled to visit the bookstore. Going through books of grief quotes on top of how I was already feeling was most likely not a great plan.

As I entered the bookstore, I had a very difficult time even finding the grief section. I went through three different salespeople until I found one woman who could actually assist me. The section in this MASSIVE bookstore was very, very small. I think that alone speaks volumes on how WELL and freely we discuss grief in our society. NOT WELL! In fact, if you picked another psychological issue, I can almost guarentee you that there were more books to purchase on it than on grief. Amazing and yet sad.

While I was going through books, there was NO place to sit. So with my headache, I decided to literally sit on the floor. Well between being on the floor, having a headache, and feeling a bit overwhelmed, I found myself crying right in the aisle of the store. I remained at the store for over two hours on the floor, reading, crying, and listening to the music they had piped into the bookstore. While in this state, Peter and Ann were text messaging me back and forth. When I got to the point where I felt like Alice in Wonderland, drowning in a pool of tears, that is when Ann heard enough and got in the car and came to the bookstore to find me. She found me and instead of moving me, sat down in the aisle with me and there we sat. Talking about Mattie, life, loss, and how I was feeling. My intention was not to mobilize Ann to the bookstore, but as I told her later in the day, I am not sure I would have moved from the floor without her assistance. So I am happy she came, and I am happy she let me be however I needed to be. Rarely do I have a meltdown out in public, but I think there were many circumstances in place today that brought my feelings to the surface. So much so that it really did not matter where I was,  it was just going to happen.

Later in the afternoon, Ann and I got together with our friend, Tanja for lunch. Lunch was a good diversion, and helped me reset my feelings for a little while. At lunch, Tanja gave me a few gifts that she and her daughter, Katharina made for me. They handpainted a moon and a sun for me, both were pottery trinket boxes, that beautifully symbolize Mattie. Tonight I placed both boxes by Mattie's ashes, which I keep in an Italian handcarved jewlery box. I think Mattie would appreciate both the sun and the moon next to him.

I received a lovely story from my mom last night that I wanted to share with you. This weekend she and my dad felt connected to Mattie and she wanted to let me know about this special encounter.

__________________________________________________
Inspired By Mattie by Virginia R. Sardi

Were they serendipitous or inspired encounters that unfolded on Sunday? I will let you be the judge but I sense the hand of Mattie’s will at work at the events that unfolded without any thoughts about Mattie as we made our plans for the day. Los Angeles was blessed with beautiful weather over the week-end, a week-end where the sun was shining, the sky a heavenly blue and the hillsides green and alive with healthy vegetation, the result of recent rains. Mauro and I decided it would be a perfect day to eat “al fresco” at one of our favorite restaurants that we recently visited with Vicki when she came to visit. Unfortunately, when Vicki was here, the weather was cold and blustery and we were forced to eat indoors. Today, however, was so glorious that it was a pleasure to sit near a babbling brook, the restful sound of water soothing to the heart and mind, putting us at a distance from the cares and burdens that normally occupy our daily existence. As I gazed upon this tranquil setting, I spied a ruby throated hummingbird on the wing. He was flying with the sunshine directly on his body, highlighting that magnificent ruby color so that it sparkled like a precious jewel. Whenever I see a hummingbird, it makes my heart soar because of its fragility, fluttery appearance of its wings and the elegance with which it can fly through the air defying gravity and reason. It was indeed the start of a beautiful lunch that did not disappoint. Seeing the hummingbird started me thinking about Mattie and how meaningful that would have been if he were with us to share the moment. It is times like this that I miss him dearly and revisit the painful loss of his presence in our lives. This I liken to a perpetual wound, sometimes felt consciously and at other times hidden from view, that creates a deep sense of melancholia that changes an otherwise beautiful world into shades of gray, black and white.

While thinking of what might have been had he lived, I spied a father wheeling his daughter, a child of no more than 6 or 7, to the table next to us. It did not take a rocket scientist to deduce that she had cancer. She was bald and unnaturally pale and fragile in appearance. She bravely and brightly made herself comfortable and courageously enjoyed the delights of a glorious day. Later, she was joined by several other families with children who came to sit at her table. She seemed happy and gay as she seized this moment to do what normal and healthy children take for granted: talk, laugh and have fun. Her dad was a trooper and did all he could to make the occasion special. He asked her several times what she wanted and did everything in his power to make things seem just right. It was déjà vu for me and Mauro as we recollected powerful memories of watching brave Mattie take on his cancer with a determination to make the most of his fleeting time on earth. Thinking about the hummingbird and the child in the wheelchair, I realize that if we had kept our original appointment and not moved it ahead by over an hour, this serendipitous encounter with a child fighting cancer might never have occurred. Although it reawakened painful memories, it is my hope that through Mattie’s foundation that Vicki and Peter have committed their lives to, this young and beautiful child whose precious life is on the line, will have the opportunity to conquer her cancer and lead a long and healthy life. I am sustained by that hope that when Americans open up their eyes to the need and sufferings of children ravaged, through no fault of their own to the destructive powers of cancer, that collectively they will demand that society put an end to the murderous assault of this disease on children and in my heart, I know that Mattie would want me not to lose my passion to see this become reality. Today, I felt strongly that Mattie wanted to strengthen my resolve to stay committed to his cause! Mattie, you can always count on me to continue the fight you started until it is won!
________________________________________________

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Looking at pictures of Mattie when he was just a baby, last night in his tot-wheels, makes me think of my own son and the amount of love I have for him. It is crushing to know that you experienced just as much love for Mattie and he was so quickly taken away. Despite being there with you through at least some of your experience with cancer and now after the cancer...I see both of you in a new and different light. I see you before cancer...and my heart breaks even more. Know that I am thinking of you. This Tuesday and every day."

January 17, 2011

Monday, January 17, 2011

Monday, January 17, 2011

Tonight's picture was taken in February of 2003. Mattie was 10 months old! As you can see Mattie was playing in one of his favorite things, "tot wheels." Mattie loved his walker because it gave him freedom and put him in control. Though he was unable to crawl and did not walk at 10 months, when he was in "tot wheels" he became a speed demon. He literally would be running around the first floor of our home, and even making turns. Corners were NO problem for him. I felt the need to post this picture because I had a flash back of Mattie in the kitchen with me tonight, as I was chatting with Peter while preparing dinner. Sometimes the reality of Mattie's loss hits me, and it is usually at unexpected times. Like cooking dinner! It is hard to come to terms with the fact that Mattie isn't around and he will not be popping into the kitchen ever. It is almost like my mind is playing a cruel trick on me, except it isn't a trick, this is my reality.  

Quote of the day: My grief lies all within, and these external manners of laments are merely shadows to the unseen grief that swells with silence in the tortured soul. ~ William Shakespeare

I freely admit to reading each of Shakespeare's plays and I deeply admire his writings. I am most likely drawn to his works because of his understanding of emotions and the human psyche, and his eloquent use of the English language. However, after I read tonight's quote, I felt the need to pause and reflect on exactly what he was saying about grief.  
 
As I absorb what Shakespeare was telling us, I realize my lens or viewpoint is clouded in grief. Perhaps that is the best lens upon which to focus on this quote. Because to me, he was pointing out that grief is very much internalized. No one can grieve for you, no two people grieve the same way, and what captured my attention was that regardless of the external "laments" you hear from someone grieving, that this is only the tip of the iceberg. It is the tell tale sign of the greater turmoil that lies under the surface. It is under the surface and can't be seen or felt by others but it is definitely overwhelming and all encompassing to the owner of the grief. A "tortured soul." I would say that parents who have lost a child to cancer are indeed tortured souls, and we are asked to do the impossible each and every day, and that is........ to live with these memories!
 
I have wanted Peter to see the movie, King's Speech, since I saw it in Los Angeles during the holidays. We finally got to the theatres today, and I must say I enjoyed the movie just as much the second time around. Like in LA, today's theatre was packed. Every seat was occupied! During certain scenes in the movie, people were crying, and there was also a lot of laughter. Peter and I rarely go to the movies anymore, so he knew if I was suggesting he see this movie, it had to be special and memorable. I suppose I am intrigued by the true story told to us through cinematic art, in addition, I am touched by the incredible story of friendship that developed between King George the VI and his speech coach. The movie illustrates the value and the power a significant friendship can have in one's life. We certainly see enough of the sinister and corrupt sides of our world, so when something life affirming, like this movie, is showcased, I most likely cling to it. The movie ends with Beethoven's beautiful and powerful 7th symphony, movement 2, which has been swirling around in my head all day.
 
This evening, Peter and I were in the kitchen together, and I came across a photo posted to the refrigerator that I hadn't seen in a while. The picture was taken in July of 2008, at a conference I was hosting in San Diego, CA. This conference happened only days before Mattie was diagnosed. As I looked at the picture, I reflected on the fact that this is what I looked like before all hell broke loose in our lives. Peter then started talking about how special that week was when I went to the conference. He took the time off of work to care for Mattie. Mattie was enrolled in several summer camps that summer, and Peter said after a week of trying to follow the schedule I gave him, he came to the conclusion that he did not know how I did it. That was funny to hear! But the conversation went from funny to sad very quickly for me. Because I could picture Mattie and Peter together that week at home, I could picture them building me a fountain for my birthday (a fountain which I still have and run each summer on our deck) as a surprise, and I then remembered the day I took Mattie to the pediatrician to find out WHY his arm was bothering him. I remembered all these thoughts and feelings in a matter of minutes, and it was overwhelming. Overwhelming equals tears for me, and what started out as an innocent picture on the refrigerator, that had absolutely NOTHING to do with Mattie, made me very sad. Somehow when I think of Mattie in the kitchen, I always have the mental image of the picture I displayed tonight. He will always be my 10 month old running around and bumping into me in the kitchen in "tot wheels."  So I began tonight's blog with "tot wheels" and I now conclude tonight's blog posting with "tot wheels."

January 16, 2011

Sunday, January 16, 2011

Sunday, January 16, 2011

Tonight's picture was taken in February of 2003. Mattie was almost two years old. Mattie was standing under a gazebo, despite the fact that it was freezing out! We had taken Mattie to walk along a nature trail at a local park, and Peter and Mattie were goofing around together in the gazebo. Mattie was looking at Peter as they were chasing after each other. I snapped a picture of that priceless face in action, playing with his daddy!

Quote of the day: There is no pain so great as the memory of joy in present grief. ~ Aeschylus

As tonight's quote astutely points out, I think one of the most horrific parts of grief is remembering the joy, the happy times, and the way life used to be. Certainly Peter and I have a great deal of pain to reflect upon during Mattie's 15 month battle with osteosarcoma. Those moments will always haunt us, but the ones that do make me extremely sad, upset, and depressed are the simple thoughts that I will never see Mattie's smile again, I will never feel his hand holding mine again, nor will I ever hear him call my name, sing a song, hug me, draw me a picture, sit and have meals together, spend holidays together, and the list goes on. The pain exists even in the happy memories, or perhaps I should say especially in the happy memories. The longing of what you can NEVER have again! I would imagine people who grieve do not always verbalize this, because so many others around us believe that talking about the "happy times" is healthy and will make us feel better. But there are NO more happy times, the happy memories also get bogged down in the grief process, and I am so happy that one of the great ancient Greek playwright's, Aeschylus, had the guts to express this!

Sometimes it is the unexpected messages and gifts that make me pause and reflect upon certain acts of kindness. Today I received a lovely email message from Christine, my friend and Campbell's mom (one of Mattie's very close kindergarten friends). Christine basically wrote to me to find out how I was feeling. She had read on the blog that I was quite sick, and wanted me to know that she was thinking of me, and also let me know that if I was sick again, she expected me to contact her so she could help me. What do you say to such a kind message? Christine also asked me about the Foundation's upcoming walk, and I was very touched by her interest. I am very aware of why the walk was originally created back in May of 2009. It was to raise money for Mattie's treatment, who at the time was alive and struggling to fight osteosarcoma. In 2009, it was very evident why a walk was needed. But it may not be as clear now.  It is true that Mattie is no longer with us, and perhaps the interest in our Walk is not as prevalent or contagious within our community as it once was. However, though the physical presence of Mattie is not here, the memory of Mattie's struggle will always be a part of me, and therefore, my love for Mattie inspires me to do the Foundation's Walk each year. The Walk is about honoring Mattie's memory and raising awareness for pediatric cancer. It is vital to remember that unfortunately each and every day about four dozen children are diagnosed with cancer. Mattie may have brought this issue to the forefront in our community, but in Mattie's honor we attempt to make a difference in the lives of other children and families battling this disease. I know this is how I feel, but when I received Christine's email today with the same enthusiasm, it brought a smile to my face, because she showed me I am not alone in my desire or in my convictions. Which simply reminds me just how powerful a message from a friend can be, when going through a challenging time.

This afternoon, I got myself together and decided to go visit Mary, Ann's mom. My goal was to give Ann a night away from her daily routine. Mary and I chatted about many things and during our time together Mary typically tells me that I am performing a heavenly act. My typical response is, no, I am just being a friend. I have been couped up for two days now, that I felt as if I absolutely needed to get out of our home, and visiting Mary and helping her, at times takes my mind off of my own issues. As I was leaving the assisted living facility tonight, to my surprise a little girl was in the hallway and ran up to me. She couldn't have been more than two years old. This little one grabbed my hand and was trying to talk with me, she particularly wanted to show me the fish in the tank. We spent about 10 minutes together, until her father came to get her. Needless to say, the little girl did not want me to leave, but I told her that I would wave good-bye to her as I walked down each step on the staircase. That caught her attention, and she did wave. I told her that I visit the facility often and perhaps we would see each other again. In a way, the whole interchange caught me off guard, because it reminded me of how Mattie would reach for my hand, and guide me to whatever he wanted to see. Naturally when she took me to the fish tank, I couldn't help but remember all the times Mattie and I watched the fish at Georgetown University Hospital. Those fish were our lifesavers especially on the weekends, when Mattie was in a funk and did not want to leave his hospital room, much less see people. However, he was always motivated to go and feed and care for the fish. Funny how a simple gesture tonight, could bring back a flash of SO many memories.