Saturday, November 27, 2010

Saturday, November 27, 2010

Tonight's picture was taken in November of 2002. Mattie was seven months old and desperate to walk. He did not like crawling and forget about sitting on the floor. Mattie wanted to move around on his feet and always found a way to convey this need to me. My college mentor at Union College sent me a school sweatshirt for Mattie when he heard about his birth. Union College was where Peter and I both received our undergraduate degrees and where we met each other. Naturally when I received this sweatshirt from my favorite biology professor, part of me wondered whether Mattie would go to Union College when he got older. Who could have possibly known in 2002, that Mattie wouldn't even make it through elementary school. 

I am sharing a story that Ann passed along to me today from a member of Team Mattie. This story was apparently posted on a website of another child battling cancer. I have mixed feelings about this story which I will share below. But if it gives other parents who read this blog comfort or helps them understand why their child was chosen to have cancer, then I consider this story worth posting.

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The Brave Little Soul by John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you." God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those who were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
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Certainly the story of the Brave Little Soul is poignant and speaks right to the heart of a parent who has lost a child to cancer. One thing is universally true about parents whose children have died, we ALL look for reasons and explanations for death. We may turn to different things for such explanations, but as logical and reasoning beings we like to understand cause and effect. Though I suspect the mom who posted this story is in a different place than I am spiritually, I do respect the message she is trying to send. Which is that there MUST be a reason we gave birth to children who developed life threatening diseases and died! We need to see the purpose and meaning behind such a great sacrifice and of course there has to be a reason why our children had to suffer incredible pain, why we had to observe this, and why we have to live with the visions from this trauma. 

Specifically in the story we hear that................. "suffering unlocks the love in people's hearts. Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer." I think that observing the suffering of others can do one of two things, it can either harden the hearts of observers because they are constantly bombarded with images and sounds of suffering (such as through access to news and graphic pictures of suffering 24 hours a day, 7 days of week) or it can be a positive life altering experience if you let it.

When Mattie was diagnosed with cancer, I distinctly recall the feeling of shock, which lasted for many weeks. I was so stricken by the news I couldn't eat and I felt extremely anxious, with times where I couldn't catch my breath or worse I felt my heart fluttering. It was during that time that Ann, our Team Mattie coordinator, stepped in, and along with Alison, they developed an incredible support system for us. From July 2008 until now, I have observed how suffering can open the hearts and minds of others. I heard from parents over the last two years, many of whom told me how Mattie's story has changed their lives and their priorities. I very much value these stories, thoughts, and feelings shared with me from other people.

However, how do I feel about Mattie having to suffer in order "to create this miracle for the good of all humanity?" Or that Peter and I are "those souls who will help you (Mattie) create your miracle?" Well how I feel about both statements is NOT GOOD! I believe in teachable moments, life lessons, helping, listening, and processing thoughts and feelings for others. I can do this for hours, weeks, and even years, and have done this for many people over the course of my life. But sacrificing my only son for all of humanity is where I draw the line. Perhaps that is selfish, and perhaps this seems inappropriate to be questioning fate and/or God. But the way I look at this is at the end of the day, Mattie's death may have changed lives, but Peter and I are still paying the price and most likely always will for this "change in humanity." In Peter's own words, "every person should have a child like Mattie, then read this story, and see if it makes you feel better about your child's death? It simply doesn't!"

Peter was busy this morning stringing up more Christmas lights. These lights seem to set our living room a glow from our balcony, and I can't help but think of Mattie when I see these lights. We went out together today for a late lunch at Mattie's favorite restaurant. It was simply frigid out and as we passed the koi pond at the restaurant, we both said hello to all of Mattie's fish! Though this restaurant is not around the corner from where we live, we visit it because it reminds us of Mattie. I can recall sitting in EVERY room in this restaurant with Mattie and I can even give you certain details about the adventures we had at specific tables. Though it may have been Thanksgiving only two days ago, I LOVE eating turkey and was thrilled to have a second Thanksgiving lunch today! I do not like cold weather, but I love cold weather foods.

At lunch, there was a woman in her 80s, celebrating her birthday behind us. She had a lot of spunk and she was sitting with two younger women. They were all sharing stories about how long they were married, and hearing this caused Peter and I to pause and reflect on our marriage. Peter and I have known each other since college and I do think the fact that we were friends first, have many common interests and priorities, enables us to somehow find our way together through one of life's worst challenges to a marriage. We chatted about various things today, and we are relearning to converse with each other again. That may sound odd to my readers, but for those of you who are parents, I ask you, what do you primarily talk about when you are sitting with your spouse? I would imagine a good percentage of your conversations revolve around your children! What happens if your children no longer exist? The answer is, it is difficult, and in many ways you have to start over again with learning the art of conversation.

Later today, when I got home, I worked on Foundation things. Peter and I brainstormed some ideas in the last couple of days, and while I had these quiet moments, I decided to sit down and be productive. While working on the computer, Peter came upstairs with a vase with three roses in it for me. The roses came from our garden and despite the cold weather, our roses are doing beautifully. He did not have to say it, but I knew he brought me three roses, as a symbol of our family and the love we have for each other.

Friday, November 26, 2010

Friday, November 26, 2010

Tonight's picture was taken in November of 2002. Mattie was seven months old. In this picture, Peter was holding Mattie and the camera at the same time. Peter snapped a picture of Mattie looking through a mirror. It is hard to know what fascinated Mattie more.... the mirror or the flash from the camera. However, my bet was on the flash of light. Mattie was always intrigued by light, and in fact "light" was one of the very first words he learned to say. To me, Mattie's facial expression was priceless here, because it captured his curiosity and intrigue.

Quotes of the day (based on our trip to the National Gallery of Art today): Everything you can imagine is real. ~ Pablo Picasso AND Creativity takes courage. ~ Henri Matisse

The day after Thanksgiving was typically a special day in our home. It was the day that Peter and Mattie would work together to devise an incredible Christmas light show right outside in our common space. They selected that space so that others from our complex could enjoy the lights of the season. Over the years, the display got more complicated, and it evolved from just a couple of strings of lights, to a full blown holiday scene complete with mechanically moving reindeer, dogs, and snowmen. People would look forward to our displays each year and our neighbors would always come outside to take pictures of the scene, and also find a way to tell us how much they appreciated our efforts. Naturally last year, we were in NO mood to string together lights. There was no joy in our hearts, much less joy about the season. This year was not going to be any different..... well that was our thinking until this morning at 4am!

I woke up at 4am to a beeping sound and I couldn't figure out where it was coming from. Peter heard the sound as well, but was doing a pretty good job trying to tune it out and continued to sleep through it. Well that was until I woke him up fully. At 4:15am, Peter was walking around our second floor trying to place the sound, and deduced it was coming from Mattie's room. We have a carbon monoxide monitor that we always kept in Mattie's room, and the battery for this detector was running low and it began to beep. Peter located the monitor and started pulling batteries out of it, to make the noise stop. However, when he came back into our bedroom, he announced that this monitor beeping was a sign. Almost like a symbolic sign from Mattie, in which Mattie was reminding Peter that today was the day after Thanksgiving, and Christmas lights need to go up. I am sure to the average reader, this sounds very contrived and far fetched. After all, how can a carbon monoxide monitor be giving us signals and messages from Mattie? Logically we know it was just happenstance that the batteries were running low, but when you lose a major part of your life, such as the death of a child, you begin to focus your attention on outside forces and signals. So really who is to say that Mattie wasn't communicating with us today? This is where science fails us, and where faith and belief take over. There is no real understanding of the after life and our connections to it, and therefore, I feel if it gives those of us who are grieving peace to think that a sign from nature or even a noise from a carbon monoxide monitor is connecting us to Mattie, I say, GREAT!

When I finally woke up this morning, I couldn't find Peter. That was because he was already up and outside stringing lights. He has decorated our balcony and our deck, but has not decorated the common space, like he typically would do with Mattie. Needless to say, I think the lights were put up this year for a different reason. They are NOT symbolic of the holidays per se, and they are NOT symbolic of our joy and happiness. Instead, they are symbolic of a love between and father and a son, and the tradition they established together over the years. They may not be able to do this together, but the tradition and the memories are very much alive.

Since Thanksgiving was a very challenging day for me, and Peter predicted that it was going to be, he had brainstormed with me earlier in the week how we could spend the day after Thanksgiving. He suggested we do something I wanted to do. So today we went to the National Gallery of Art and saw the "Impressionism to Modernism" exhibit. It was a cold, windy, and rainy day in Washington, DC, however, I felt like walking to the museum. I did not want to be trapped in a Metro or taxi. Understand though that this meant we needed to walk two miles to the museum and two miles back. Along our walk, we passed the National Christmas tree twice. A place we took Mattie to several times!

The "Impressionism to Modernism" exhibit was part of the Chester Dale Collection. Chester Dale's magnificent bequest to the National Gallery of Art in 1962 included a generous endowment as well as one of America's most important collections of French painting from the late 19th and early 20th centuries. This special exhibition, the first in 45 years to explore the extraordinary legacy left to the nation by this passionate collector, features some 83 of his finest French and American paintings. As some of you may recall in January of 2011, I will be going into Donna Ryan's kindergarten classroom, at Mattie's school, to do a three part series on Matisse and Picasso. So when I saw some of their works today, we snapped pictures. Below are just four of the wonderful paintings we saw today.

Still Life with Apples on a Pink Tablecloth by Henri Matisse

The picture doesn't do this painting justice. The colors are vibrant and the patterned wallpaper in the backdrop seems to be an extension of the table. The contrasts in colors were remarkable and the pitcher on the table seemed to be glimmering and reflecting light.

Still Life by Pablo Picasso 

Picasso was considered the father of cubism. Cubism is a technique that
is characterized by a separation of the subject into cubes and other geometric forms in abstract arrangements rather than by a realistic representation. In addition, cubism depicts human figures from several viewpoints. So in many of Picasso's paintings, you may see the subject's face from various angles, in that you will see the person's eyes, ears, and even back of his head!

The Houses of Parliament, Sunset by Claude Monet

Monet was by far my favorite Impressionist painter. Chester Dale also shared my love for this incredible artist. Monet had a way of capturing objects and people as a snapshot in time. Monet could paint the same scene over and over, and each time his final product would look different. The key element was light. His gift for understanding light and color were remarkable and continue to capture the hearts and imaginations of his viewers.

Girl with a hoop by Auguste Renoir

Karen, my lifetime friend, once joked with me that she visited a museum and saw me there. What she was referring to was Renoir's painting of this little girl with a hoop. I may not look like this little girl now, but when I was much younger the resemblance was uncanny. So I can't look at this painting without thinking about Karen's comment.

When we got back home today after walking back from the museum, I was cold, and needed to change into warm clothes. While upstairs, I could hear Peter outside on our deck and he wanted me to come downstairs to see something. I had NO idea what was in store for me when he opened the door. There was this fuzzy black thing just sitting there. Frankly it looked like the end of a cat's tail or one of Patches' cat toys. But it WASN'T! Peter told me it was some type of caterpillar!

Peter googled this fur ball and found out that it is a Woolly Bear Caterpillar. Woolly is an appropriate name considering its long, thick, fur like coat.

Folklore of the eastern United States and Canada holds that the relative amounts of brown and black on the skin of a woolly bear caterpillar (commonly abundant in the fall) are an indication of the severity of the coming winter. It is believed that if a woolly bear caterpillar's brown stripe is thick, the winter weather will be mild and if the brown stripes are narrow (LIKE THIS FELLOW), the winter will be severe. In reality, hatchlings from the same clutch of eggs can display considerable variation in their color distribution, and the brown band tends to grow with age; if there is any truth to the aphorism, it is highly speculative.

We have lived in our current location for over 15 years and in all the time we have been here we have NEVER seen a woolly bear caterpillar. Peter joked with me that Mattie sent us this BIG creepy crawler to capture our attention outside and to tell us that he approved of the Christmas lights. So perhaps Mattie was with us in spirit after all today?!

Thursday, November 25, 2010

Thursday, November 25, 2010

Tonight's picture was taken on Thanksgiving of 2002, Mattie's first Thanksgiving. Mattie was only 7 months old. I remember buying Mattie's puppy dog hat for him and I also recall how cute he looked in it. It is hard to believe that Mattie was once a part of our lives and is now no longer here with us. It is a surreal and very upsetting reality.

Thanksgiving by Charlie Brown


On Thanksgiving Day we remember
With many smiles and tears
All the loved ones that we treasure
And those we've lost along the years
Aunts, uncles and grandparents
Sometimes good friends too
But for us, your parents
All pale beside the loss of you.
So on this day of Thanksgiving
We are both grateful and very sad
That your time with us was so very short
But that we had you made us glad.

I received this beautiful poem from my friend Charlie today. Charlie's poem does capture my feelings for the day. As Peter and I reflect on all our loved ones who are no longer with us today, we are acutely aware of the fact that the loss of any loved one is painful. But the loss of Mattie, a child, is unnatural, and therefore, it produces a pain that is indescribable. A pain that seems to become intensified when I am around parents and their children. Peter experienced this and had these insights months before me, but now we are both on the same page at times with being around children. This feeling doesn't hit me all the time, but when it does, it is upsetting. It is upsetting because on one hand I realize the loss that surrounds us, we are not parents, we are not nurturing anyone, and at the end of the day there is no one to hug and to love in this special way. On the other hand what is also upsetting is that I feel having these feelings further isolates me and separates me from those who are parents. They can't relate to me, and I can't relate to them, and at times I admit to feeling conflicted and jealous of the fact that others have healthy children. Jealousy isn't an easy thing to admit to, especially since this is a trait I am not particularly wild about.
 
Peter and I reflected back on Thanksgiving of 2008. It was simply a horrible day. Mattie was released from the Hospital to have the holiday at home. However, keep in mind that Mattie was recovering from all of his limb salvaging surgeries. He was in terrible pain and the psychological impact of cancer and its treatment had hit him hard at this point. He was battling depression and anxiety, and frankly medical post traumatic stress disorder. Peter and I were already strung out, but the aftermath of surgeries just about put us over the top. The whole day at home was so painful that I honestly do not know how we survived the day and the many days thereafter. Now that is it two years later, Peter and I are faced with the memories of 2008 and 2009, and now the reality of Mattie's death. In fact, some days, when you think of the whole picture, it is rather daunting and hopeless. 
 
We spent a good portion of the day at Ann's house. Mary, Ann's mom, was there, along with Bob's brother and sister-in-law. Mary has become an important component of my life, and having her at Ann's today, made the day bearable. In fact, as we said good night to each other, we both acknowledged how happy we were to be together, and how the loss of our sons has made us simply unhappy people. At dinner tonight, we each went around and had to reflect on a high and low of our day, along with what we were thankful for during this year. Highs and lows are things Ann typically does at her table with her children, and she is nice enough to include us in the process. However, some days reflecting on highs and lows are impossible, and don't get me started on reflecting on what I am thankful for. Cognitively I can rationalize that Peter and I have a lot to be thankful for.... we have each other, our health, the memories of Mattie, and a wonderful supportive network. However, if I said that I am happy and thankful today I would be lying. Losing a child and surviving that process is like riding on an out of control roller coaster. It is out of control, because we haven't elected to go on the ride, and we aren't always sure what the next move is going to be or how it will make us feel. I managed to say something at dinner but it most likely wasn't what was really on my mind or in my heart. Most likely because what I have to say on certain occasions simply isn't appropriate.
 
I read a posting tonight from Karen, another Osteosarcoma mom who lost her son, Keaton in 2009. As I read her reflections on Thanksgiving, all I could say is..... I understand. I truly get what she was saying. How can you have your son with you one minute, and in the next he is gone? When I feel lost, confused, disgusted, and isolated, I think of Karen and two of the other moms who I have gotten to know who lost their children to Osteosarcoma, and I realize we all understand each other quite well. We are speaking the same language and we are experiencing a level of pain that doesn't seem to ever go away. This is a pain that I rarely talk about now, and certainly I do not bring it up in conversations. Unless by rare circumstance someone starts talking to me on this deep level. This pain is hard to hear, it leaves others feeling stymied and not sure how to help. However, here is the key to grief work. The key is patience and allowing someone to talk, to be heard, and perhaps this maybe a repetitive process. But feeling understood and feeling empathy are crucial I believe for survival.
 
My friend Tanja, who is on a family trip in Florida, was thinking of me today, and sent me some creepy crawly pictures of things Mattie would have absolutely loved. She sent me a picture of a huge snake, an enormous frog, and a frightening looking lizard. Mattie would have most definitely gotten a kick out of this and I see others who knew him well can't look at these things without thinking of him either. Nonetheless, these creatures brought a smile to my face! 
 

To all of you who wrote to us today, thank you! We appreciate your support and we hope our readers had a peaceful Thanksgiving. In honor of Thanksgiving, I posted a picture of Peter's apple pie, with a carving of a turkey on top of the pie!

Wednesday, November 24, 2010

Wednesday, November 24, 2010

Tonight's picture was taken in November of 2008. Mattie received this wonderful turkey hat from his school counselor. As soon as Mattie put it on, I snapped a picture. Despite the chemo and all the surgeries, Mattie was always beautiful to me. His face was angelic in many ways, and this turkey picture captured the spirit and energy that was Mattie. Though Mattie is no longer with us, Peter and I are grateful we had Mattie. He taught us a lot in seven short years, and we shared a special love that is so powerful that it continues on, even without him here. As tomorrow is Thanksgiving, Peter and I reflect on our amazing loss, and at the same time, we also reflect on what Mattie has left us..... an incredibly supportive community that continues to stay with us, who continues to read the blog, and who continues to remember and honor him. For you we are grateful. 

In light of tomorrow's holiday, I want to share a funny story my mom sent me. I hope you get a chuckle out of it too!

The BAD Parrot

A young man named John received a parrot as a gift. The parrot had a bad attitude and an even worse vocabulary. Every word out of the bird's mouth was rude, obnoxious and laced with profanity. John tried and tried to change the bird's attitude by consistently saying only polite words, playing soft music and anything else he could think of to 'clean up' the bird's vocabulary. Finally, John was fed up and he yelled at the parrot. The parrot yelled back. John shook the parrot and the parrot got angrier and even more rude. John, in desperation, threw up his hand, grabbed the bird and put him in the freezer. For a few minutes the parrot squawked and kicked and screamed. Then suddenly there was total quiet. Not a peep was heard for over a minute. Fearing that he'd hurt the parrot, John quickly opened the door to the freezer. The parrot calmly stepped out onto John's outstretched arms and said "I believe I may have offended you with my rude language and actions. I'm sincerely remorseful for my inappropriate transgressions and I fully intend to do everything I can to correct my rude and unforgivable behavior." John was stunned at the change in the bird's attitude. As he was about to ask the parrot what had made such a dramatic change in his behavior, the bird spoke-up, very softly, "May I ask what the turkey did?" HAPPY THANKSGIVING


I am back to my cycle of not sleeping well, feeling tired all day long, and having a migraine headache. Not a great way to handle a difficult holiday week, but I imagine these two things are correlated! Since I couldn't sleep, I woke up this morning and began cooking things for tomorrow. Peter and I are spending the day with Ann and her family on Thanksgiving. I asked Ann what things I could contribute and I know she would prefer that I not take anything on, but I always feel better when I can participate in the process. I love fresh cranberries and I recall my grandmother teaching me at an early age how to make cranberry sauce. Those times in the kitchen I remember fondly, and what you have to understand about my grandmother was she was particular. She did not allow most people into her kitchen. She considered this her space, and she NEVER wrote down a recipe either. It is unfortunate that I did not pay more attention to her recipes while I was growing up, because she was an amazing cook. Nonetheless, my grandmother and I shared a special bond and it was solidified within the kitchen and cooking. So somehow cranberries remind me of her and this time of year. I also recall when I began dating Peter that he took me to the Oceanspray cranberry bog in Massachusetts. Seeing a cranberry bog was an incredible sight, and I recall (as I am sure Peter does as well) my excitement over everything cranberry that trip. I came home with cookbooks and so forth.

The other item Peter and I are working on is an apple pie. When I began dating Peter in college, I would spend Thanksgiving with his family. Since flying home to Los Angeles from upstate NY for a few days did not make much sense. It was during multiple Thanksgiving trips that I got to know Peter's maternal grandparents. Peter's grandmother was feisty. She loved her family and she also spoke her mind. Two qualities I admire greatly. You always knew where you stood with Gladys. Gladys was a wonderful pie maker and it was during these feasts I learned about her Brown Bag Apple Pie. Literally her pies were baked inside of a brown paper shopping bag. When I first saw this, I was sure she was going to set the house on fire, but naturally that did not happen. Instead, the brown paper keeps your oven clean from the pie that is cooking, and at the same time it locks in the juices of the pie. Therefore, each Thanksgiving, in honor of Gladys, we make an apple pie. So this evening as I am writing the blog, our home smells of fresh apple pie. Ann is lucky if she gets an intact pie tomorrow, since I am very fond of this pie!

This afternoon, Peter and I had the wonderful opportunity to have tea and coffee with Brett Thompson. Brett and his friend, Heath Hall, are the cofounders of the Pork Barrel BBQ company (http://www.porkbarrelbbq.com/about-2/) which is also opening up a restaurant in Del Ray, VA in January of 2011. Brett and Heath are both lobbyists and worked many years on the Hill. Over many late nights together on Capitol Hill, watching Senate meetings about Pork Barrel spending, they had a vision about creating a phenomenal BBQ sauce and also giving Washingtonians access to quality BBQ. Many of us have dreams, but Brett and Heath had the courage to follow their dream and make it come true. They both have full time jobs by day, and at night and on the weekends they work extremely hard to get their company and idea off the ground. They are living the American dream, the dream we may have heard our grandparents talking about, but a dream we do not see executed that often in today's world or economy. In many ways, Brett and Heath are remarkable men, who are excellent role models for our younger generation. With hard work and the application of your skills and abilities, you can make your dreams come true. Needless to say, they created their own BBQ sauce, which is now sold in over 1000 stores around the country. Why am I telling you this? Because of their connection to the Mattie Miracle Cancer Foundation.

Last year, Ann sent out an e-mail to all of Team Mattie. She encouraged every member of the Team to spread the word about our Cancer Walk, about the Foundation, and about encouraging local businesses to sponsor or contribute a gift in kind to our Walk. Her message was circulated and it eventually landed up on the Del Ray Civic Association listserv. This is how Brett found out about Mattie and our Foundation. Our story touched Brett, and though we never met him, his company contributed financially as well as gave us a generous gift in kind for our Walk. Brett and Heath donated a case of their famous BBQ sauce as a Walk raffle item. This was a popular and sought after item, and an item that helped raise money so that we can live out our Foundation's mission.

When Brett suggested we meet today, my main objective was to thank him for his support and for also announcing our Walk on his company's facebook page in May. I have watched numerous YouTube videos on Brett, and in the videos he comes off as a very down to earth, hard working, and passionate person. I can safely say that the Brett you see on the videos is indeed the same Brett you see in person. He was generous with his time today, he listened to our hopes for the Foundation, and of course he listened to my feelings about the complexities of trying to run a Foundation while also grieving the loss of our son. He understood what I was expressing and he also let us know how deeply touched he has been by reading the blog. What Peter and I did not expect however, was his commitment to us. He would like to work with us this year and help us develop a legislative strategy and to figure out a way to help us be effective from an advocacy and lobbying perspective. Which of course is one of our Foundation's missions and objectives.

As I pause and reflect on Brett's kindness today, I am simply in awe of a person who is a busy professional, is trying to make his own company a success, and yet wants to make the time to help us. It is funny how thanking him over coffee, turned into something we never would have expected. As we said our goodbye's today, I told Brett that seeing Mattie develop cancer and die have been very challenging and in many ways have caused me to be cynical. Yet when I meet someone such as Brett, it causes me to see the beauty in people and to understand just how Mattie's story impacts all of us, and in essence how Mattie's story is inspiring someone like Brett to use his skills to help other children with cancer.

Tuesday, November 23, 2010

Tuesday, November 23, 2010 -- Mattie died 63 weeks ago today.

Tonight's picture was taken in October of 2007. We took Mattie to a park by the Potomac River one weekend, and I brought a picnic lunch and Peter brought Mattie's soccer ball. I remember Mattie as a boy in perpetual motion at all times. He had two speeds...... on and off, and when he was on, he expected you to keep up with him. That particular afternoon, after Peter and Mattie played ball together, they sat down together and I found their proximity so touching that I snapped a picture. There was a different expression on each of their faces, but both seemed to be reflecting love and happiness to me.

Quote of the day: When you grow old or ill, the most important things to you will be who and what you've loved. ~ June Martin

It is hard to believe that this marks the 63rd week of Mattie's death. Time, people, and situations continue on, and yet for Peter and I we can recall that Tuesday, 63 weeks ago, as if it were yesterday. It is a day that has and will always impact our lives. In the midst of our reflection, we have received so many e-mails in the past two days about the glorious moon. Last night was a full moon, and though we went outside to look at it, there was a cloud or marine layer in the sky preventing us from getting a clear shot. However, many of you shared your stories about your spotting of Mattie Moon. For some of us, the moon is no longer just the moon. It has a name and an identity..... Mattie!

I went to the mall bright and early this morning. In fact, the mall opens up for walking traffic before the stores actually open. So, it was my thinking that I would sit, have tea, and read my book. However, what I wasn't expecting is the music blaring so loudly in the mall. In fact, there was not a place in the mall that I could go to to escape the sound. The mall is completely decorated for Christmas and the music blasting out at all of us was Christmas music. Needless to say, unlike what I intended, this was NOT relaxing, nor could I concentrate on reading. Prior to Mattie developing cancer, I could read, write, and concentrate with just about anything going on in the background. However, after Mattie's cancer and death, I need complete silence to think and process information. It is almost hard to imagine that I entered the PICU one way, and exited a completely different person. Within a two year time span, I have found that I can't stand loud noises, I despise crowds, confusion, and commotion. So instead of reading, I landed up sitting on a bench watching people and becoming upset. Various things today brought tears to my eyes. While immersed in my own feelings, I was observing a mom helping her adult son, who had severe physical impairments, eat his breakfast. She could not address her own needs because he clearly needed her undivided attention. I stopped and paused from my own thoughts, to reflect on her life, her dedication, and her selflessness to her son. Caregivers, to an adult or child with impairments, are special people to me, and seeing this mom with her son today reminded me of the intense role I played in Mattie's life after his surgeries.

I went to the mall today on a mission to buy a dress. Peter and I are attending another Georgetown University Hospital fundraiser in December, and I learned that the attire is dressy. I must have tried on about 20 or more dresses today. My goal was to get a dress that wasn't black. I did not succeed. I tried on purple and red dresses, but they just did not work. I actually was going to settle for this one particular purple dress, but I could see the salesperson just wasn't happy with the way I looked in it. She did not say it in so many words, but I am good at reading between the lines. I could tell she was on a mission to help me, and the dress I finally bought reminds me of a dress my mom bought me for my prom during my senior year of high school. The style is different clearly, but the concept of black lace with a gold underlay is similar. Funny how this dress found its way to me today.

Later in the day, I headed over to the Georgetown University Hospital, where I met Brandon (Mattie's big buddy) and his mom, Toni for lunch. While sitting together, several nurses came over to say hello to us. The first nurse I saw who came to give me a big hug was Erin. Erin was one of Mattie's nurses who I will never forget. Erin taught me how to change Mattie's brovaic (central line) dressing using "chester chest." Chester was a dummy, but even trying to learn on Chester freaked me out at first. Erin is calm, doesn't raise her voice, and is extremely patient. So she was a good match for me. However, throughout Mattie's treatments, Erin was not only a competent nurse but a compassionate one. She would see me in the hallway some days and would just come up and give me a hug. I clearly looked lost and in need of a hug on MANY occasions, and frankly when overwhelmed and sad at the same time hugs are more affective than words. I distinctly recall one night, when Peter went home (to get rest, something he rarely did) and I was in the PICU with Mattie just about to the publish the blog, when I lost the whole thing. Mind you it was about midnight at that point. I was mortified because blog postings take a great deal of time and effort some days. Erin entered Mattie's room as I was in a panic about the blog and I told her I lost the whole posting and I did not know how I could recreate it and entertain Mattie at the same time. Erin understood (as did MANY of the HEM/ONC nurses) that the blog was important to me and had to get done. So literally Erin brought in white paper that night and we got crayons out, and she inspired Mattie to draw her several pictures. Honestly he must have created for her at least four pictures that evening, and I know several are still on her refrigerator today! Mattie was motivated to do this for Erin, and this among many other acts of kindness remain with me today.

I enjoyed seeing Erin, along with Debbi (our sedation nurse angel) who I have the pleasure of seeing on a regular basis, and Alice. Alice is a pediatric nurse administrator. While Mattie was in the hospital, I usually saw Alice when I had a problem. However, now that I am on the parent advisory board at the Hospital, I see Alice on a regular basis, and am getting to know her better. Debbi emailed me later today and she told me she rarely goes to this particular restaurant on the Hospital's campus. So in essence we were meant to see each other day today. In fact, Mattie introduced me to a whole new world, filled with extraordinary people. People I would have never met without cancer. I most certainly could have done without cancer and Mattie's death, but I feel sorry for patients and their families who do not have access to the caliber HEM/ONC nurse that is present at Georgetown.

Toni, Brandon, and I had a lot to talk about. Toni told me that she thinks of Mattie all the time, and how last night's moon caught her attention. She was outside throwing out her garbage, and she couldn't get over how bright it was. When she looked up in the sky, she said there was "Mattie moon!" Toni is a preschool teacher and this week while digging in the school sandbox with the kids, she came across an acorn with its cap on. Toni was amazed that this acorn remained intact within the sand, and she picked it up and saved it. Definitely a Mattie move! Mattie has rubbed off on so many of us, and I loved hearing these stories.

Toni reflected on pictures of Brandon when he was a young boy. As I reflected on Mattie's baby pictures. Neither one of them had any physical indications that they were going to develop cancer a few years later. Nonetheless, Toni and I are part of the same club, a club that alters your life and perspective forever. As I told her and Brandon today, talking and listening to cancer stories now is NOT easy for me. However, Brandon and Mattie were so close and went through treatment together. They were good buddies for each other, and connecting with them is different from hearing a cancer story from someone new in my life. Brandon is NOT new to me, he is an integral part of our story and battle.

In the midst of reflecting on our days in treatment, we thought about Jenny, Jessie, Whitney, Lesley, Meg and Laura. Jenny and Jessie were Mattie's art therapists, and Whitney, Lesley, Meg and Laura were Mattie's childlife interns. As my faithful readers will remember, Jenny and Jessie were incredible art therapists. They stimulated, engaged, and supported Mattie in ways too numerous to mention here. These two individuals made the Lombardi Clinic special. They were like two rays of sunshine in a very intimidating and sometimes depressing place. They were the perfect therapists for Mattie, because their philosophy was to have the child direct the art, NOT the therapist assign a task. This made their job much more challenging, because on any given day, they were helping children with clay, paint, model magic and other media all at one time. That meant a lot of juggling, but they did it smoothly, effectively, and with great skill. I can't imagine what art therapy would have looked like for Mattie if he was told on a given day what media he had to work with. For Mattie the beauty of creating came from within, and Jenny and Jessie embraced this and empowered Mattie to make his own decisions. A key point for a child undergoing cancer treatment, because SO little is under their own control. This therapeutic duo is NO longer at Georgetown, and this saddens me. I can assure you the old saying.... no one is irreplaceable, is definitely FALSE in this case. Their physical presence may not be in the clinic, but the memories captured with them remain in that space always.

After Toni, Brandon, and I said our goodbyes, I got in the car and headed to the grocery store. When Peter and I first moved to Washington, DC, we shopped at a Safeway in Georgetown. However, over the years, we migrated away from the store. While Mattie was battling cancer, this store was being renovated. So I decided to visit this new store today. All I can say is WOW! It is hard to believe it is the same store we used to shop at years ago. Frankly the store looked like a huge Whole Foods, except the aisles weren't narrow, people weren't on top of each other, and everyone in the store was lovely. While shopping there, I text messaged Peter several times because I couldn't believe I was in a Safeway. Things were displayed so creatively and the slightest look of confusion on my face, produced instantaneous help from people within the store. My dad and I both love grocery shopping, and as I was roaming around, all I could think to myself was.... wow Daddy do I have a store to show you!

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen, who thinks of us each Tuesday. Kristen wrote, "As Thanksgiving day nears and the Christmas season begins know that I am thinking of you. A second Thanksgiving without Mattie will be no less difficult than the first...I am keeping you all in my thoughts this Tuesday and everyday."   

Monday, November 22, 2010

Monday, November 22, 2010

Tonight's picture was taken on November 3, 2007. Mattie went with Peter to his office on that Saturday to pick up things he forgot but needed for the weekend. As you can see, Peter had a huge dry erase board in his office, where he would strategize solutions for his business clients. That day, Peter erased part of the things on the board, so Mattie had room to create. In typical Mattie fashion, there was a glorious SUN, which was incorporated into almost every picture he drew. His sun always had a smiling face in it too, and you can see it here if you look closely. He also decided to draw a car and a tree on the board, and the product wasn't complete until he signed his name to it..... MATTiE! Mattie was still learning his lower case letters, but even when he did learn them, he still continued to sign his name all in capital letters, except for the letter i! I love this picture that Peter captured, and I loved the fact that Peter would take Mattie to the office, so Mattie could understand where and what his dad was doing during the work week.

Quote of the day: Empathy is your pain I feel in my heart. ~ Hospice Volunteer

I began my morning at 6am. Not a typical hour for me, since I have never been a morning person. It wasn't my intention to get up, but I was jolted awake. Not by a noise, not by our cat, but by a dream. In my dream, I was working in our kitchen but then decided to take a break and carry something from the kitchen to our second floor. I vividly saw myself carrying some sort of glass product in my hands and then saw myself  exit the kitchen into our hallway. As I turned the corner in the hallway to go up the staircase, I saw Mattie standing and staring at me on the second step. He was wearing his navy sweat pants, and a navy and white striped shirt. He wasn't smiling, but looked upset. However, even in my dream I was so startled to see him, like I was seeing a ghost, I dropped the glass in my hands and it shattered in a million pieces. With that, I woke up, feeling startled and unsettled. I have been reflecting on this dream all day, mainly because I was troubled by Mattie's facial expression. Part of me wishes that I remained asleep so that I could have found out what Mattie was trying to tell me on the step. The figure of Mattie was healthy, there were no signs of cancer, but I wasn't sure if he was telling me he is upset or he is upset with me. But I remember that upset face very well. It is a very unnerving feeling to have a picture of your child's upset face with you all day, and unfortunately in my case, I have no way to rectify what I saw. Because the only way to alleviate my feelings would be to ask Mattie. However, this is the second time I have dreamt of Mattie, and in each visit he has come to tell me something, because he is upset. If you are a parent, then you know that one of your roles is to help your children when they are upset, and we do not always respond correctly, but we try all sorts of strategies because we do not like seeing our children hurt or sad. But what happens when you are unable to do anything at all? I realize this was just a dream, but what if Mattie is indeed upset and he is reaching out to me in some way and I can't help or do anything about it? It may sound far fetched, but I have a hunch I am not the only parent who has lost a child who has these fears.

I spent the day with Ann's son, Michael. He is home this week for Thanksgiving break and Ann was at an out of town conference with her daughter. Like Mattie, Michael has specific things that he is interested in, and can easily engage in playing them. Ironically, Michael and Peter have always gotten along together, and when we are watching Ann's children on occasion, they pair off together, and I have the girls. However, over the course of this year, Michael and I have had the time to spend together. We can not connect on sports, since this is not an area I relate to at all, yet, we have an understanding with each other. What I noticed today was Michael wanted my company. He wanted me to sit with him while he was playing, he wanted to talk while playing, and when I was engaged in a chore around the house, he would call for me to come back. This was SO reminiscent of Mattie it was scary.

I picked up Ann's youngest daughter, Abbie, and my 10 year old friend, Katharina from school today. Abbie is learning about multiplication and she instructed me today about the beauty of multiplying any number by one. While doing homework, Michael and I were making snacks. They have taught me how to make a peanut butter, marshmallow, honey, and banana sandwich. All very healthy items really, but somehow seeing it all put together makes me laugh. The more I laugh, the more inspired they are to eat. The beauty of children! I helped Abbie get ready for her gymnastics class today, and when it came time to do her hair, I asked her how she wanted to wear it. She basically told me that she wanted to wear it the way her mom does her hair. Fortunately I have seen Ann do this hairstyle before, so I knew what she was talking about, but I found it very sweet that she was thinking about her mom while she was away. Sometimes moms don't realize their level of importance and the significance of what they do, after all there is no financial compensation, no performance feedbacks, or daily perks and benefits. But it is in these subtle messages from our children where we can see the vital connections we have with them. These are the connections and moments with Mattie that I miss deeply. 

Sunday, November 21, 2010

Sunday, November 21, 2010

Tonight's picture was taken in November of 2007 on Roosevelt Island. In fact, if you look at the picture we took and posted on yesterday's blog, you will notice that this is the same location we snapped a picture of Mattie in 2007. Notice the spires behind Mattie were of Georgetown University (where the Hospital is located). In many ways this picture is eerie to me, almost as if it was foreshadowing the connection we would be having with that campus and Hospital in 2008. Nonetheless, I love this picture, seeing Mattie happy and in red, and of course notice he never let go of the crinkle hedge apple, which he found on the Island, and carried it with him throughout our entire journey that day.


Quote of the day: Every action of our lives touches a chord that vibrates in eternity. ~ Edwin Hubbel Chapin

Peter and I went for another walk around Roosevelt Island today. It has been such a lovely Fall weather weekend, that being outside and walking in the sun seemed like the thing to do. We saw ducks and cardinals today on the Island and just enjoyed the sights and smells of fall. I acquired two more leaves on our walk to add to the collection I picked up yesterday. There were some leaves I couldn't identify, so I came home and did an Internet search of leaves, and I now know what a yellow poplar, a silver maple, and a sycamore leaf looks like.

When we returned home we both worked outside in our garden. We picked up leaves and pulled out plants that aren't making it because of the cold temperatures. However, I still left many of our plants intact, since I would prefer to see as much green for as long as possible, before everything disappears with the winter.

Later this afternoon, I did something I haven't done in ages. I sat on our couch. I typically do not like spending time in the living room, since this was really ground zero in our home. This is where Mattie did most of his playing, where we spent good and bad times together, and where Mattie's hospital bed was located after his second limb salvaging surgery. Being in the living room is just awkward for me. But today, Peter asked me to sit with him, and naturally that meant I was sitting between him and Patches. So all three of us were on the couch. We chatted and also looked through holiday store catalogs. One in particular was featuring t-shirts with absolutely hysterical sayings on them such as, "I only do what the voices in my wife's head tell her to tell me to do," or "it's my cat's world, I am just here to open cans." We got a chuckle out of reading these things together, and somehow I am trying to find some sort of peace by being home. But it doesn't come easily.

Tonight we are cooking dinner together and roasting a whole chicken. Thanksgiving may be next week, but in my kitchen we are starting early. I freely admit that I may not be in the Thanksgiving day spirit, or even able to come to terms with Mattie's loss and the fact that we are celebrating another holiday season without him, but some thing that has remained consistent is my love for Fall foods. Since Mattie's death my desire for being creative in art, cooking, and other things are important to me. Maybe because in the end the product is aesthetically pleasing, makes others happy, and in a way makes me feel better about myself. I have certainly seen enough ugliness thanks to cancer, that now I seek out beauty in the world around me.