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

December 11, 2010

Saturday, December 11, 2010

Saturday, December 11, 2010

Tonight's picture was taken in May of 2003. Mattie was a year old. I took him to a petting zoo that day, and what I love about this picture was Mattie's obvious fascinating with the ponies. Well it may not be obvious to you, but it was to me. The telltale sign of Mattie's fascinating was illustrated in his hands. His fingers were like antennas. If they were up and moving around, almost like seaweed in the ocean (swaying back and forth), then I knew Mattie was intrigued and engaged. In fact, if I let go of Mattie, he most likely would have jumped right in the pen with the ponies. I learned early on that Mattie was the kind of kid that did better in the fresh air, in open spaces without crowds, and amongst nature. I am not sure I had a great appreciation for being outdoors prior to having Mattie in my life. However, because I had a steep learning curve as Mattie's mom, to deal with his sensory issues, I quickly and almost scientifically studied what environments worked for him and what environments needed to be limited or avoided, until he was ready.

Quote of the day: If you should hear a song, out in the meadow loud and clear, have no fear - he is there. The melody heard is that of love, and those who listen hear it true. ~ Unknown


Sunday, December 12, is the 14th Worldwide Candle Lighting sponsored by Compassionate Friends (a self-help bereavement organization offers friendship, understanding, and hope to families following the death of a child). I realize with the holiday season upon us, asking you to stop and pause (and even light a candle) at 7pm on Sunday, may be an impossibility. But this moment of reflection would mean a great deal to Peter and I, as well as ALL the parents out there who have lost a child. I included some information about this Worldwide Candle Lighting below.


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Light a Candle For ALL children who have died

Excitement has been building as the fourteenth Worldwide Candle Lighting (December 12, 2010) approaches. The Compassionate Friends Worldwide Candle Lighting unites family and friends around the globe in lighting candles for one hour to honor and remember children who have died at any age from any cause. As candles are lit at 7 p.m. local time, creating a virtual wave of light, hundreds of thousands of persons commemorate and honor the memory of children in a way that transcends all ethnic, cultural, religious, and political boundaries.


Now believed to be the largest mass candle lighting on the globe, the Worldwide Candle Lighting, a gift to the bereavement community from The Compassionate Friends, creates a virtual 24-hour wave of light as it moves from time zone to time zone. Hundreds of formal candle lighting events are held and thousands of informal candle lightnings are conducted in homes as families gather in quiet remembrance of children who have died, but will never be forgotten.

http://www.compassionatefriends.org/News_Events/Worldwide_Candle_Lighting.aspx

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This morning I did something VERY different. I went to a gingerbread house event at the National Building Museum. Tamra invited me to this Washington tradition with her daughters. In this picture you can see both myself and Louise (Tamra's daughter) posing with our finished gingerbread house products!

The event was two hours long, and the museum supplies you with precut pieces of gingerbread, royal icing, and candy. Your job is to put the pieces together and to decorate your house. We sat next to a family who has clearly been coming to this event for years. They arrived with bags of their own candy and a strategy of how to decorate their house. You would think two hours is a lot of time for such a project, but in all reality it takes time to think about how you want to design and decorate your house.

Tamra gave us these wonderful holiday aprons and for two hours we were engaged, covered in royal icing, and observing the different creations around us. The children in attendance were so energized in the room. I observed them buzzing around me and the tables trying to "steal" ideas to take back to use on their own houses. They used the word "steal," which was a riot. As if they were up to some top secret work, as they were checking out the different designs and layouts around them. They were very cute and I would say for the most part this activity captured the minds and hands of ALL ages!

After this fun event, I went out to lunch with Tamra and Louise. We spoke about so many things and we also chatted about our Foundation's wonderful connection with Mercury (the high stakes public strategy firm), thanks to Brett Thompson.

Tamra then made a comment that stuck with me. As many of my readers know, I refer to Mattie as "Mattie Moon." A name he received in preschool. Tamra thought it was quite appropriate that our Moon should now be aligning with Mercury. Mattie is our Moon, and Brett is our Mercury. It seems too coincidental that these two bodies that exist in our solar system, should also play such a significant role in our lives. I never made the connection until Tamra spoke about it today.

When I arrived home, Peter took pictures of my creation. I think the challenging part to designing this house today was working with someone else's candy. I had to design something with items that were given to me rather than with candy I preselected. That may not sound like a huge difference but it is.


This evening I spent time with Mary, Ann's mom. Ann and her children are visiting family today, so when I can, if I know Mary is going to be alone, I try to visit. I sat with Mary while she had her dinner tonight, and in the midst of that also helped Mary's roommate. Mary's roommate, though cognitively impaired, has become a friend of mine. I care about her well being, and I could see she was upset tonight. So I helped her with her dinner and with her bathroom routine. I am not sure how many people would take on such an endeavor, but frankly after living in a hospital for over a year, there is very little at this point that you can show me that will gross me out. Once I have gloves, I can do just about anything. Any case, I will spare you the details, but what I do want to share with you is that after helping this lady, she grabbed a hold of me, and gave me a big hug and a kiss. I was deeply touched by her expression of emotion and appreciation. Which brings me to the bottom line. Even people with severe cognitive impairments have feelings. When you treat them nicely, they CAN feel it, and they do know the difference.

I would like to end tonight's posting with a song entitled, One Last Christmas. I found this song on Keaton's website. As many of you know, Keaton was a young boy who lost his life to osteosarcoma about a month after Mattie. Keaton's mom writes on her son's site regularly, and tonight she posted this song. I must warn you, it is very touching and could be hard to watch. The song was written to tell the story of a little boy named, Dax, who lost his life to cancer. This boy died only after his whole community gave him one last Christmas in OCTOBER. I very much relate to this unity of community, and though Dax was not my son, I understand all too well the sentiments being conveyed in the song.
One Last Christmas
http://www.youtube.com/watch?v=Ye39mgcHC3E

December 10, 2010

Friday, December 10, 2010

Friday, December 10, 2010

Tonight's picture was taken in August of 2009. As many of my readers know, this red ride-on car was affectionately named "Speedy Red" by Mattie. My parents bought Speedy Red for Mattie because this was something he really wanted. In fact, I used this ride on car as an incentive. Before I knew his cancer metastasised, I told Mattie that he could get such a car if he worked very hard in physical therapy to regain his strength and to relearn how to walk. However, when we learned that Mattie's cancer spread everywhere, only six weeks OFF of chemotherapy, I had to face that Mattie wasn't going to recover, he wasn't going to get rehabilitated, and he was never going to "earn" Speedy Red. Because of the rapid nature of Mattie's decline, there was NO time to fill out an application with the Make-A-Wish Foundation. Instead, my parents helped to make Mattie's last wish possible, and Peter and I executed and assembled the wish! As you can see in this picture, Mattie was quite ill. He needed oxygen constantly and he was very frail and weak. Despite all of these things, he was an excellent driver and Speedy Red did give him joy. Initially when he was learning how to drive, I rode on board with him. Which wasn't easy, because this car was not built for adults. Nonetheless, there was no way I was letting him drive around without help and supervision. He took to driving like a duck to water, and within a day, I gave up control, and he drove independently. Of course there was some risk to this since he had a pain medication pump attached to his central line (broviac) and also had an oxygen tank in tow. I knew Mattie wanted the freedom to drive, and sometimes as a parent you have to weigh your choices, and to me allowing Mattie some brief moments of happiness outweighed the potential risks.

Quote/story of the day: Remember Now by Walter Dudley Cavert

"In the bottom of an old pond lived some grubs who could not understand why none of their group ever came back after crawling up the lily stems to the top of the water. They promised each other that the next one who was called to make the upward climb would return and tell what had happened to him. Soon one of them felt an urgent impulse to seek the surface; he rested himself on the top of a lily pad and went through a glorious transformation which made him a dragonfly with beautiful wings. In vain he tried to keep his promise. Flying back and forth over the pond, he peered down at his friends below. Then he realized that even if they could see him they would not recognize such a radiant creature as one of their number. The fact that we cannot see our friends or communicate with them after the transformation which we call death is no proof that they cease to exist."

My friend, Charlie, sent me tonight's story entitled, Remember Now. This story captures my attention because in a way it is very symbolic of Mattie's life. I would like to believe that Mattie is now represented in the dragonflies and butterflies that have fluttered around me this spring and summer. He has made a transformation, and on some level I need to trust my faith or follow my heart and accept that he exists. Mattie is very much alive in my mind, heart, and in all the beautiful sightings in nature, such as the glorious moon that visits us each night.

I went to bed very late, at 2am to be specific. However, at 6am, I was wide awake. I was jolted awake from a dream. In my dream, I was sleeping, but a noise of some sort woke me up. In the dream, I looked at our bedroom door and I could see that it was slowly opening up, and poking his head through the door was Mattie. Mattie was checking to see if Peter and I were up. In my dream, I distinctly remember being utterly confused, because I was saying to myself, "I thought you were dead?!" Just about when Mattie and I were going to talk to each other, that was when I woke up. However, when I woke up, I could remember seeing his face very vividly, and it felt as if he were in the room with me.

Today was an incredibly long day. I started with a Board of Professional Counseling meeting at 9am. This board regulates the licensure of Professional Counselors in the District of Columbia. This meeting went on for six hours! Some of you may recall that I had a very cantankerous meeting with two officials from the DC Department of Mental Health a few weeks ago. Well these individuals were supposed to appear before the board today. One actually came and the other conference called in. The basic issue that we are dealing with comes down to a pure and simple turf battle. A battle between social workers and counselors. Fortunately after serving in many leadership roles in the field, I am very, very aware of this national debate on the scope and competency of practice. Just like a few weeks ago, today I was relentless. For 90 minutes, I would not let up on our position as Licensed Professional Counselors. We were armed with facts, regulations, and specific information. To the logical mind our case is hard to refute, which is WHY I know this is NOT an issue about facts. This is an issue about inequality, oppression, and irrational thought. One field trying to oppress (this is a harsh word, but a very accurate one!) and discriminate against another. If you want to oppress my field, then at least have the courtesy to do it armed with information, facts, and substance. I clearly could see, as is typically true in these situations, that their case had NO merit. Yet they are impacting the livelihood of every professional counselor who works for the DC Department of Mental Health. I was spare you more details, but for 90 minutes I was on fire. I was thinking clearly, speaking factually and passionately, and because the social worker who was addressing the board by phone was so disrespectful and impossible to reason with, I literally told her that her participation was becoming counterproductive and told her we were disconnecting her from the call. I literally picked up the receiver of the phone and hung up on her. Her legal counsel in the room could understand that I wasn't going to be walked over, have the board disrespected, and allow this person to talk over myself and everyone else on the board with misinformation. I typically am not that bold or aggressive, and try to work collaboratively. But if you cross the line, which happened numerous times in this meeting, there are consequences. After this 90 minute firing squad was over, I was physically and emotionally drained, and yet we had other cases to hear!

I felt good about how I handled the situation, but that took a great deal of energy, and it does takes its toll out on me. I began to feel very cold in the meeting and began shivering. All physical signs for me that I am beginning to shut down. But I certainly couldn't, I had hours more to go! I did pull it together, and I always find it funny how people comment to me after one of my tirades how amazed they are with my ability to defend a position. Always nice to get that feedback from the board, who I feel is comprised of very knowledgeable and committed mental health professionals.

I eventually made it home this afternoon. Originally, I thought the meeting would be over by 1pm, and therefore I had plans to spend the afternoon with Ann and Mary. That never happened since I got home at 4pm, and was exhausted. Peter and I went out to dinner, and I shared my day's adventure with him, and I heard about his day. Peter met Robbie for coffee today. Robbie was one of Mattie's favorite volunteers at the Hospital. Robbie is a very bright, energetic, creative, and empathetic young man, who we had the good fortune of meeting through Brandon (Mattie's big buddy). We are looking for ways to get Robbie connected to the Mattie Miracle Cancer Foundation and I look forward to this opportunity to continue working with him in this capacity! Those who attended the Mattie March in 2009, may remember Robbie. Robbie and Brandon literally pushed Mattie's wheelchair around the track and engaged Mattie and helped him connect with his friends that day. By that point in time, Mattie had become very sensitive to being in crowds and around people, but being surrounded by Brandon and Robbie served as a protective buffer for him when Peter and I couldn't be by his side that day. Another memory of kindness I will never forget!

Thursday, December 9, 2010

Thursday, December 9, 2010

Tonight's picture was taken in January of 2008. Only six months prior to Mattie's cancer diagnosis. It is almost hard to believe since he looks SO healthy! As you can see we were on one of our weekend nature excursions, and in usual Mattie fashion he collected a big stick along the way. In fact, Mattie's stick collection was quite impressive at one time. He displayed them in our commons area. Some were standing up straight, others were arranged so that they were touching each other, but in any case, the composition made a statement. Though the collection isn't up anymore in the way Mattie arranged them, the sticks are still lying beside all the ivy in our commons area. The boy is gone, but his creativity remains.


Quote of the day: In Asian countries one can still find delicate tear vases used by mourners. The tears shed into the little vases are considered sacred. The tear bottles are kept and often buried with the person mourned. Even if our tears are for ourselves, for our ache of loneliness, for our pain of loss, they are still sacred, for they are tears of our love. ~ Rabbi Jack Stern, Jr.

This morning I decided to head to the shopping mall to buy a few things. Waiting until the weekend, as we get closer to the holidays is NEVER a good idea. While driving to the particular mall in question, I passed the Pentagon. Flying overhead was a chinook (a twin-engine, tandem rotor heavy-lift helicopter)! I wasn't expecting to feel one way or another about such a sighting, however, to my surprise watching this chinook made me cry. Mattie loved helicopters and airplanes, but he was very intrigued by chinooks. In fact, he liked them so much, I bought him two children's books about chinooks, and the main character's name was Chin UP the Chinook. So as I was innocently watching this chinook flying today, I realized something was VERY wrong. My co-pilot, Mattie, wasn't in the back seat screaming in excitement over this sighting. Instead I was watching it alone, simply remembering, and feeling perplexed by this loss. I continue to reflect on Elizabeth Edwards' comment about her life after her son died. She said she was "parenting Wade's memory." It is so well stated and I relate to it deeply.

It was a day of running around and in between running, I sat down for lunch and continued reading "Saving Henry." This is a book that I do not read daily, which is most likely why it is taking me forever to read it. Over lunch, I read the chapter when Laurie (Henry's mom), realizes her son is dying. She actually knew he was dying much earlier in the process than I knew about Mattie. As she was describing her feelings, I swear for that moment in time I was transported back to September 7, 2009, the day before Mattie died. Everything came back to me, which is problematic especially when trying to eat and being in a public place. So literally I couldn't finish the chapter and had to close the book.

However, on a much brighter note, through my Blackberry today, I received the wonderful Press Release (see below) that Brett and Mercury sent out today about our work together. Our interactions with Brett and his company, are like rays of sunshine for me. On days when I feel lost or down, I focus on the work we will be doing with Mercury and Brett, and this helps to re-energize and re-engage me.

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FOR IMMEDIATE RELEASE CONTACT: Lucy-Claire Saunders

(212) 681-1380
lsaunders@mercuryllc.com

Mercury takes action with Mattie Miracle Cancer Foundation on Capitol Hill for pediatric cancer
Mercury teams up with non-profit to create legislative support for families dealing with childhood cancer


Washington DC, December 9, 2010– Mercury has announced a pro bono partnership with the Mattie Miracle Cancer Foundation (https://www.mattiemiracle.com/) aimed at creating legislation that will provide for the social and psychological needs of families managing pediatric cancer.

“Hospitals and doctors are great at diagnosing and treating cancer, but, currently, little is done to ensure a network of support is established to help families deal with cancer diagnosis and treatment, including the difficulty of chemotherapy, and end of life or survivorship issues,” Brett Thompson, Managing Director of Mercury, said. “I have the honor to know Vicki and Peter Brown, Mattie’s parents and the founders of the Mattie Miracle Cancer Foundation, and their compelling story has ignited a cause that will hopefully reach the ears and hearts of the U.S. government.”

The Mattie Miracle Cancer Foundation (MMCF), was founded in memory of Mattie Brown, who passed away at age seven after battling multifocal Osteosarcoma, a deadly and rare form of bone cancer. Mattie’s mother, Victoria Sardi-Brown, is co-founder, chairman and president of the Foundation, which is dedicated to building public awareness to pediatric cancers and supporting children and families through the treatment process. She has written daily blog posts (http://mattiebear.blogspot.com) since her son was diagnosed with the debilitating cancer, and continues to do so, depicting the heart wrenching struggle a family endures during the stages of childhood cancer. The result has been an overwhelming show of support from the D.C. community and from individuals nationwide.

“As a parent, hearing the words, ‘your child has cancer,’ is daunting, frightening, overwhelming, and shocking,” Vicki Brown said. “It is a diagnosis you never expect to hear, but once you do, life as you know it no longer exists. The Mattie Miracle Cancer Foundation believes that children and their families upon diagnosis and throughout the treatment and recovery phases must have access to quality mental health care. Such care is vital to the overall health and wellness of the family unit, the child's outlook about treatment, and the family's perspective on the future.”

Broadening the Scope of Practice in Pediatric Oncology to include the psychosocial health of family members is crucial as parents are an essential part of the treatment team. Patterns of stress in parents of children treated for cancer often differ from those in families of children treated for other diseases.

"The Mattie Miracle Cancer Foundation is committed to helping the 46 children a day who are diagnosed with cancer and their families as they struggle with the reality of a childhood cancer diagnosis,” said Peter Brown, noting that the emotional toll and the stresses a family experiences when their child is being treated for cancer can be disastrous to all involved.

“With the help of Mercury, MMCF will raise the national attention of these issues and get the support, resources and help that these families need as they focus on saving their child's life,” he said.

Cancer is the number one disease killer of children between infancy and 15 years old. Osteosarcoma is the most common type of bone cancer, and the sixth most common type of cancer in children. Although other types of cancer can eventually spread to parts of the skeleton, Osteosarcoma is one of the few that actually begin in bones and sometimes spread (or metastasize) elsewhere, usually to the lungs or other bones.

“By working with the Mattie Miracle Cancer Foundation, we want to ignite the awareness needed for legislation that will provide families facing a cancer diagnosis with the appropriate emotional and psychosocial support,” said Max Sandlin, a partner at Mercury, who recently met with Victoria and Peter. “We were more than happy to offer our full resources as this is a worthy cause.”

Mercury (http://www.mercuryllc.com) is a high-stakes public strategy firm. We use our expertise and reach to gain competitive advantage for clients. Our expertise comes from extensive must-win campaign experience and operating successfully at the highest rung of business, government, politics and media. Our reach is the ability to use strategic intelligence to mobilize the message and persuade the toughest audiences. We know what it takes to win in difficult situations. We have proven results for prominent figures, leading advocacy groups and the world’s most successful companies.
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This evening, I attended a jewelry party that Ann hosted at her house for the women in her neighborhood. Ann had a friend, Peggy, who makes some beautiful pieces, and tonight, Peggy featured necklaces with beautiful heart beads. The proceeds from the sale of those necklaces went to the Mattie Miracle Cancer Foundation.

Though I do not live in Ann's neighborhood, I do know many of her neighbors. Several of them are my friends, and as my readers, I know you have come to know them indirectly................ Tanja, Tina, Mary (not Ann's mom), and Katie (Zachary's mom).

I snapped a picture of Ann's table tonight, and in the background you can see our youngest shopper, Abigail (Ann's daughter). It was a very festive evening filled with wonderful foods, lots of conversation, and a home decorated for Christmas. There are moments when all of this becomes overwhelming, mostly because I know I am going through the motions, because this level of happiness is no longer part of my life. Somehow being around happiness is taxing and physically and emotionally draining for me. What a sad commentary in a way.
Last night I shared a dream my mom had of Mattie. I am ending tonight's posting with a follow up memory my mom shared with me. This memory seems to tie in quite well with her dream. I appreciate her writing these memories down for me, because I find Mattie stories very meaningful. I always enjoy hearing how Mattie related to others and how he captured one's love and attention.
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A Mattie Memory by Virginia R. Sardi

I recall one day I was baby-sitting for you in DC. Mattie and I played many different games to pass the time away but ended up playing one of his very favorite games, Hide-And-Seek. He loved to play it and especially enjoyed when I hammed it up pretending I couldn't find him until after I searched everywhere else but where he was. It was the last game that had me worried because I really didn't know where he went off to and after a long search I could not find him. My one consolation was that I knew he definitely was in the house, but where? Even though I could assure myself he was there, I started to panic when I checked all the familiar hiding places and found he was not there. In desperation I called out his name to see if I could force him to give me a clue as to where he was. Then I figured it out. He had to be in a closet cleverly hidden where I could not see him. Indeed, he was in the closet of his room tucked away in a dark and barely accessible corner. Resourcefulness was his hallmark even when he played a simple game of Hide-And-Seek and I was always aware of his creative side so I was not surprised that he left me befuddled in my search for him. It was with joy and relief that I finally discovered his hiding place in which he concealed himself under a bundle of clothes. He squealed with laughter when I found him. I hugged him tightly and felt so relieved to embrace him physically once again. In a sense, my dream and that special Hide-And-Seek game I played with him that afternoon had strong parallels. In both instances, I could "sense" his presence even though I could not see him. When I awoke from my dream, this "sense" of Mattie being present persisted throughout the day. It was as if it was in my power to find his new hiding place as I had done so long ago in our simple little game because I could feel that he was still expecting me to find him! How I wish I could!
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December 9, 2010

Wednesday, December 8, 2010

Wednesday, December 8, 2010

Tonight's picture was taken in July of 2003. Mattie was about a year old, and as you can see he was being transported around in his favorite manner. On Peter's back! Prior to the backpack, traveling around with Mattie was next to impossible. In the summer of 2003, we took Mattie to the Outer Banks of North Carolina. As you can see, Mattie was standing behind an astronaut's uniform, which was on display at a museum in Kitty Hawk, NC.  I am sure at the time I took this photo, I wondered if Mattie would be interested in science and space as he got older. I never would have imagined in 2003, that I wouldn't get the chance to find out.


Quote of the day: You give but little when you give of your possessions. It is when you give of yourself that you truly give. ~ Khalil Gibran


I received an email last night from one of Mattie's favorite preschool teachers, Lana. Lana wanted to share with me a blog posting she found on line. The posting was a message written by the late Elizabeth Edwards to a mom who lost her daughter, Maddy. I must admit that prior to reading the quote Lana sent me, I was unaware of the fact that Elizabeth Edwards lost her first son, age 16, in a car accident. However, after reading the message below, it became quite clear to me that she understood the death of a child very well. So I then googled Elizabeth Edwards and learned more about her life. In fact, in her bio, it said that after she lost her son, Wade, she quit work, and actually never walked back into her office again. She never even went to clean out her office space. She left everything behind. That may sound odd, but to me it made perfect sense. Nothing she possessed in her former life mattered anymore. With the death of a child, priorities change, interests change, and simply stated, YOU CHANGE! In Elizabeth Edwards' own words, after her son died, she turned her attention to "parenting Wade's memory." I relate to her statement on a very deep level, and in a way reading how she felt made me see that I am not alone in my feelings and thinking. Elizabeth Edwards was not a wallflower or weak by any stretch of the imagination, however, the death of her son, impacted her greatly and she also felt Wade's death may have contributed to many of the issues she faced with her husband.


Elizabeth Edwards said…

I am so very sorry about Maddy. For your family’s loss and for her loss of life with a loving family.


I have often described the death of a child in this way: in life we have a blackboard on which we write all the things we are doing — our jobs, coaching soccer, working at Goodwill, going to basketball games, whatever. And the board is full, so when the next thing comes along, we find a corner or the board to add a computer class or a space between other things for book club or sewing Halloween costumes. It is full and lively and seemingly all important.

And then your child dies, and all the things that were so important that you worked to squeeze them in? Well, they are all erased. And you are left with an empty blackboard. Everything you thought was important was not. And the next time you write something on the board, you are very, very careful about what it is. Your choices about what to do and how to do it are so much more deliberate. Doing something that is so patently important as public service — whatever your politics — well, that seems like an easy call. That is worth some of the space. And putting something on the board, well, it allows you — in your words — to function another day. And each day that you find something else worthy of the board makes it a little easier to put one foot in front of the other. And each day you functioned the day before makes it easier to function again. Are there still bad moments, even bad days nearly twelve years later? Sadly, there are. But they are not as frequent and they don’t happen in that same emptiness you feel today. Now when they happen, we can turn to something that we have written, something worthy of our time, of his parents’ time and we can function through that pain. As you will — not without Maddy, but with Maddy not as a living, breathing daughter but as an inspiration and a helper to decide what is worthy of your blackboard.


I appreciate Elizabeth Edwards' analogy of our life, after the death of Mattie, to an empty blackboard. A board with no writings on it, no identifiers, and only emptiness. I like the visual she paints of Mattie helping Peter and I decide what is worthy now to be placed on our blackboard. A vision that I will carry with me on difficult days.

Tonight Peter and I went out to dinner with our friends Junko and Tad. We went to a restaurant none of us had ever been to before. In a way this restaurant made us feel like we were back in college. It was packed with people and there was a live trivia game going on while we were eating. Tad had his iPad in his work bag, which I was thankful for, because as some of the questions were read, we were able to look up the answers. I enjoyed the the instantaneous access to information! I have a feeling if I had an iPad, I would be absolutely glued to it. However, as I begin to think about writing and capturing my thoughts, having such a lightweight tool with me could be helpful. Especially since I seem to do some of my best thinking in not such convenient locations. When Mattie was sick, I had the chance to see Junko on a regular basis, but unfortunately our lives don't intertwine as often as they once did. Despite that, we do stay connected and it was so nice to have the opportunity to reunite, reconnect, and to have a fun distraction (the trivia game) together.

I would like to end tonight's posting with a message I received from my mom. My mom had a dream about Mattie. Unlike the dreams Peter and I have had, her dream of Mattie featured a healthy Mattie. There seems to be a pattern with all of dreams though, in that when we move closer to Mattie to connect with him or understand what he is trying to tell us, we wake up.
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Wings of a Dream by Virginia R. Sardi

Life is beyond our control even when we give our all to manage it with intense preparation and diligence. Somewhere in our journey of highs and lows, we realize that being committed to the interests of those we love will not necessarily guarantee their well being or happiness. As frail human beings, we attempt to make the right moves that will have positive bearing on our future by treating life’s twists and turns like a chess game where a checkmate neutralizes the dangerous obstacles in our path, only to find that life itself is mysteriously unpredictable defying the rules of any game.

As in life, dreams are not within our power to control or command. Would that we could have the power to dream on command, we might subconsciously find philosophical explanations to the many perplexing questions that elude us in the reality of everyday life. We might find ways to stay connected to those precious to us but lost to us in this world by dreaming in another plane or dimension. But alas, dreams are fleeting leaving us with a host of impressions from which we must sort out the messages hidden to us even as they intangibly float away as in a hazy mist not revealing the mystical key that would unravel their mysteries.

A week ago I had a dream about Mattie. I do not dream often and I’m afraid that when I do, I forget most of it by the time I awaken. Not only did I remember this dream, but I wanted it to continue when I woke up. My dream of Mattie was very different for I could see him quite clearly across a room surrounded by other children and some adults. Usually, when I dream of people they are mostly engulfed in shadows of themselves. In this dream, I did not recognize any of the others in the group but I could see that Mattie was very animated and had the attention of his small audience as he demonstrated “something” to them. They were mesmerized by his performance and so was I as I watched him from across the room. Suddenly, he became aware of my presence and beckoned me to join him. No words were spoken but he just looked at me with an encouraging smile and a knowing look. It was my intention to reach him but I never did because just at that moment I woke up. My frustration at not being able to connect with him beyond that initial moment of recognition was disturbing but then I reconciled myself to the fleeting nature of dreams, which like life itself we have no control over. I was grateful to have a glimpse of a healthy Mattie, before the ravages of cancer, intellectually engaged as was his trade-mark in life who acknowledged me with his beautiful and captivating smile. It was so real a dream that when I woke up I felt his presence in my room. Would that I could command a repeat performance but alas it is not within my power to make it happen again. My interpretation of what transpired in this brief encounter is positive for he was at peace, smiling and happy to see me. What more could I ask for given the reality of the circumstances? I treasure my “Mattie Dream” as I do all the memories I have of him when he was alive and pray that I will once again be carried away on the wings of a dream to be in his presence once again and be energized by the sunshine of his smile.
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December 7, 2010

Tuesday, December 7, 2010

Tuesday, December 7, 2010 -- Mattie died 65 weeks ago today.

Tonight's picture was taken around Christmas time in 2006. We were visiting Peter's parents in Boston, and Peter took Mattie for a walk in the woods behind their house. Mattie spotted a lovely ground cover of moss, and decided, despite the cold temperature, to stop and lie down on this natural cushion. He made himself right at home and enjoyed feeling the sensation of the cold ground cover beneath him. Peter captured that moment in time on their walk together, and though I wasn't there with them, when I saw this photo I could feel the happiness Mattie must have felt by having the freedom to roll around and by outside.


Quote of the day: The conventional explanation, that God sends us the burden because He know that we are strong enough to handle it, has it all wrong. Fate, not God, sends us the anguish. When we try to deal with it, we find out that we are not strong. We are weak; we get tired, we get angry, overwhelmed. We begin to wonder how we will ever make it through all the years. But when we reach the limits of our strength and courage, something unexpected happens. We find reinforcement coming from a source outside of ourselves. And in the knowledge that we are not alone, that God is on our side, we manage to go on. ~ Harold Kushner

As I look at tonight's picture of Mattie, I can't help but reflect upon his bright red jacket, his reindeer hat and matching scarf. You may not be able to see the scarf in this picture, but this hat and scarf combination was something that I picked out for Mattie specifically to match his coat during the holiday season. Mattie LOVED the color red, and in many ways it fit his personality. This morning, as I was trying to help Peter locate his earmuffs in the closet, what literally jumped out at me from our bin of hats, gloves, and scarves, was this reindeer scarf in tonight's picture. In fact just seeing the scarf brought back all sorts of feelings for me. I am surrounded by Mattie's things. They are all around me. But this scarf, something I do NOT see every day, flooded my mind with memories. Mattie wore that scarf for example when he and I built an igloo outside our deck. I remember that day, it was frigid out, and we were outside for hours. Mattie handled that adventure well, and I landed up with the flu. There are many vivid memories of Mattie wearing that scarf, and it is hard to believe that the scarf is still with us and in perfect shape, and yet Mattie is gone.

Today marks the 65th week Mattie has been gone from our lives. Peter and I learned over the course of the past two and half years that cancer is a horrible and life altering disease, and we are quite adamant in our feelings that no child or family member should have to experience what we lived through. I have been writing about my feelings and our story since July of 2008, and yet today, I was simply floored by what came out of the mouth of an eleven year old. Which only confirms that we have a lot of work to do, and cancer awareness and education should not be targeted only to adults but children too.

I had the opportunity to pick Michael (Ann's son) and his friend up at school today. Michael's friend made some astute observations about the interior of my car. She noticed I had a Highlight's Magazine in the back, I had spray painted rocks and pennies in a compartment in the backseat, and I had a plastic lizard sitting on my dashboard. I told her that all those things belonged to my son, and I left it at that. However, I suspect she knew Mattie had died based on the way she and Michael were conversing. Michael's friend went on to tell us a story about a girl she knew who developed cancer. She said that the girl is fine now, and after her treatment for leukemia was over, the girl was able to have her wish granted through the Make-A-Wish Foundation. For those of you unfamiliar with this fine organization, it is the nation’s largest wish-granting organization. Since 1980, the Foundation has given hope, strength and joy to children with life-threatening medical conditions. From our humble beginnings with one boy’s wish to be a police officer, the Foundation evolved into an organization that grants a child’s wish in the U.S. every 40 minutes. The girl in this story wished to go to the Country Music Awards, and her wish was granted.

Now here is what shocked me. Michael's friend went on to tell me that her friend was very lucky to go to such an awards show, and she wished she had cancer so she could get a wish granted. As soon as she said that, both Michael and I told her that there is no way she would want cancer and that she shouldn't even joke about wishing such a thing. I have been thinking about her comment ALL afternoon and into the evening. I am not sure what bothers me more, the fact that she perceives attending an awards show and getting a "wish" granted as more significant and important than her health, or that she perceives a cancer diagnosis as a mundane physical illness, like getting a cold or the flu. Honestly which ever way I look at this, the conclusion I come to isn't positive. Keep in mind that this young girl is a bright and inquisitive person, and most likely is voicing her opinion, an opinion which I am sure may be shared by other young people. Over the past two and a half years, I have observed and heard from many parents about the impact of Mattie's death on their children. Though this isn't the majority of families I have interacted with, there is a percentage of parents who feel it is important to shelter their children from cancer and all its unpleasantness. I naturally respect whatever decisions parents come to, but I do have to say that children are a lot more resilient than we give them credit for. Explaining cancer at a developmentally appropriate level to children, I feel is crucial. When children can't talk about things they hear about with the adults in their lives, then they are left to their own devices. Such devices can produce one of two reactions, complete fear, or worse complete ignorance. Ignorance into thinking that cancer is worth having because of the attention and special gifts you can get. The whole notion of this today bothered me, and all I could picture as she was wishing herself cancer, was this girl's life being transformed by osteosarcoma. An image that I can freely see, and one she has NO idea about. Chances are if she knew what I did she would see that her health was better than any wish the Make-A-Wish Foundation could grant!
 
Later today, I got to share a family story with Michael. One of his school assignments is to create a book of family memories. Or in essence to collect oral histories from four generations of family members. Though I am not related to Michael, Ann asked if I would share a story about one of my grandparents with Michael (my story would constitute a memory from the fourth generation). The assignment is a very clever one, because it teaches children on to listen, ask questions, and absorb information orally, and then capture it in writing. I like the premise of this assignment, because it not only teaches skills, but it has you connect with four generations of family members, and it records snapshots of family history. Something a child might not appreciate now, but in years to come, this will be an important gift.
 
There are many stories I could have shared from either my paternal or maternal grandmothers, since I spent a great deal of time with both. However, I chose a story that relates to this Cameo pin you see pictured here. This cameo pin belonged to my paternal grandmother, and I remember before my uncle died, he gave me this piece of jewelry. My grandmother had eluded to her challenging introduction to the United States, but my uncle filled in many of the unexplained pieces and when I received the cameo, all I could think of at the time was I was holding and now possessed a very important part of my family history. I never wear this pin, and I haven't looked at it in years. But I store it in the same place, and when I needed to give Michael a picture that captures the essence of my story, I immediately went to find the pin today. My grandmother grew up in a small town in Southern Italy called Cassano. By American standards this town may seem backward. When I visited it in the 1980s, the town did not have running water or electricity 24 hours a day, and all the streets were cobble stoned, with very little vehicular traffic. When my grandmother was a young girl, her parents decided to send her to America to "visit" her brothers (who had already immigrated to New York). My grandmother thought she was going away for a journey but would return home after her visit was complete. Before she departed Italy, her mother gave her the cameo you see here. A cameo that would have great significance. For you see, my grandmother never went home again and she never saw her parents again. My great grandparents in essence said good-bye to their daughter (without her knowledge) in hopes that she would have a better life in the United States. My great grandmother purposefully gave my grandmother this cameo with a brilliant stone resting on the lady's heart as a reminder of their love and connection. The stone was to signify that my grandmother was always a bright light in her mother's life, and in a way the shinning stone represented the heart of my great grandmother and her love for my grandmother. I find this to be a valuable and very touching memory, and I guess I can relate to this story, because I now know how hard it is to say good-bye to your child. I have to assume my great grandparents loved my grandmother so much that they were willing to separate from her, so that she could have a chance for a different way of life. I can't fathom such a decision, but I do know that this pin has been passed down four generations (from my great grandmother, to my grandmother, to my uncle, and to me!). 
 
I would like to end tonight's posting with a message from Mattie's oncologist and my friend Kristen. Kristen wrote, "With the holiday rush in full swing and me wishing that Christmas was in March this year...thank you for helping me to reflect on what is truly important in the Holiday season and every day. Thinking of you this Tuesday and every day."

December 6, 2010

Monday, December 6, 2010

Monday, December 6, 2010

Tonight's picture was taken in December of 2006. Several years in a row, we met my parents in Deerfield Beach, FL after Christmas to spend time together. Mattie loved going to Florida in December because he could wear shorts in the winter, play on the beach, and also visit one of his favorite places, Butterfly World. Butterfly World is a place I remember fondly because it is a magical experience to walk amongst butterflies. Butterfly World is an extensive butterfly farm and research center which was started by an electrical engineer who retired to Florida and opened the doors of this incredible sanctuary in 1988. I included a link if you want to learn more  http://www.butterflyworld.com/start.html . However, as soon as you walk from the parking lot to the entrance of the sanctuary you are transported to another world in a way. A world of flowers, wind chimes, and beautiful classical music. You can hear and see these things right by the sign Mattie and I were standing at. As you can see, Mattie was in his typical Mattie position. Our cheeks were touching each other and his arms were wrapped around my neck. As you look at this picture, I wonder what you see first, or what captures your attention? When I see this picture, I am not necessarily seeing anything but instead am recalling the feeling, the feeling of that very moment in time


Quote of the day: There are some who bring a light so great to the world that even after they are gone the light remains. ~ A quote featured on the plaque Debbi (Mattie's sedation nurse angel) gave us this evening at dinner!

Today was a day I RARELY experience. In fact, it is so rare for me that I am even afraid to write about it. Why? Because for the most part my days since Mattie's death are just one big amorphous blob, without direction and purpose. Today was different though, it was a productive day and a day I felt as if I actually accomplished something. I began my day by contacting the director of the Hospital Schooling Program at the Children's Hospital of Philadelphia (CHOP). As a new member of the pediatric parent advisory board at the Georgetown University Hospital, I agreed to contact CHOP to learn more about the educational programs they provide for chronically ill children at the Hospital. It is the hope that such a program could be established at Georgetown. At CHOP, the Hospital Schooling Program is run by the school district of Philadelphia, however the district gives the Hospital the autonomy to hire their own teachers and to regulate their program internally. So in essence the teachers are employees of the Hospital and as such have access to patient charts and attend psychosocial meetings. Making them integral parts of a child's holistic treatment team. I had a very productive 45 minute conversation with the program's director, and learned how CHOP's program was started, what some of the challenges are of running such a program, and how the Hospital teaching staff works in conjunction with the patients' teachers from their school districts, schools from all across the Country. It is of interest that 40 to 60 percent of children at CHOP are NOT from Philadelphia, and yet these Hospital teachers find a way to integrate all the necessary requirements within the curricula!

I have mixed feelings about a Hospital School Program. Initially when Mattie got sick, I was upset that he would miss a year of school (goodness if that was only the worst part of all of this!), and I felt that I needed to find a way to keep his mind stimulated. So perhaps a Hospital School Program would have been a God sent back then for us. But on reflection, school was NEVER an option for Mattie during his year's battle with cancer. Mattie was too sick, too fatigued, and more over the psychological impact of chemo and surgeries made formal instruction impossible. At first I was upset by this, but I let that feeling go quickly. What Mattie wasn't learning in a classroom, he was gaining in other ways. Cancer can make you grow up quickly, and didactic learning under those circumstances would not have been the right choice for Mattie. He needed some freedom to be himself, to create, to have SOME control over his day, and to be silly. Throughout the treatment process, Mattie became an advocate. If he saw something that did not make sense, he made sure his doctors and nurses knew about it. Being an advocate is NOT something you learn in a classroom, being an advocate is something you learn through life experiences. The hospital itself was ONE big life experience for us.

On the other hand, I value education, and I do think based on one's treatment regimen and length of time in the hospital, that a Hospital School Program is imperative. The beauty of such a program is that it isn't mandatory, and families can opt into it or out of it. Hours, days, and months spent in a hospital can be confining, upsetting, and boring. An educational program could certainly be enriching, stimulating, and help children connect with one another within the pediatric units. So there are definite benefits to hospital schooling as well.

Later in the day, I ran some chores, and then drove to Peter's workplace and picked him up to attend our first strategy session with Brett Thompson. Many of my readers know Brett as the co-founder of the Pork Barrel BBQ Restaurant in Del Ray, VA. In fact, those of you who attended last year's Foundation Walk, may recall that one of the raffle prizes was a case of Pork Barrel's famous BBQ sauce. Brett supported the Walk last year, and he did not even know us. He just felt compelled to support a worthy cause. This should give you some indication of his depth and character! Keep in mind that Brett, prior to joining Mercury, was a legislative director within the US Senate by day and in the evening partnered with a colleague to develop an amazing BBQ sauce, a sauce they named, "Pork Barrel," after watching many late night senate debates on pork barrel spending! Their goal was to bring quality BBQ to the Washington, DC area, and they have succeeded! In fact, I suspect that if Brett takes something on, it is simply destined to succeed. Which is why after meeting him today, I felt very empowered.

When Peter and I met Brett two weeks ago for coffee, he surprised us once again with his generosity. Brett is an entrepreneur by evening, but a high powered lobbyist by day. In fact, he is a Senior Vice President at Mercury, which is a high stakes public strategy firm in Washington, DC. I included a link to Mercury here so you can learn more about it: http://www.mercurypublicaffairs.com/

Brett has officially signed us on as one of his clients, to help us develop a legislative and advocacy strategy. A strategy that will also involve scheduling monthly Hill visits, accompanying us on these visits, coaching us on talking points, and providing us with a solid platform on which we can make a stand about pediatric cancer. Brett introduced us to several of his colleagues, who I listed below. Peter and I also met Congressman Sandlin, a partner at Mercury, who said that his staff would not only offer us the full extent of their resources, but that they would be happy to do so because they all stand behind and support our cause. To some extent, meeting these fine individuals today, who are compelled by our story and who want to stand up to the inequalities of pediatric cancer care, research, and treatment, is an overwhelming feeling! I never thought for the life of me that our story, a story I write about each day, would land us in front of a person like Brett Thompson. I included a link below to all the Mercury people we met with today.

Brett Thompson, a Senior Vice President at Mercury
http://www.mercurypublicaffairs.com/staff-member/brett-thompson

Congressman Max Sandlin, a Partner at Mercury
http://www.mercurypublicaffairs.com/staff-member/hon-max-sandlin
 
Sarah Martin, a Director at Mercury

Jesse Appleton, a Vice President at Mercury

As our meeting came to a conclusion, Brett told Peter and I that he was impressed with us. He said that from his experience, he has never seen a Foundation, created by two parents who lost a child, develop in such a solid, organized, and thoughtful manner. I told Brett that I took that as a high compliment coming from him, and I also said that I appreciated this feedback, because sometimes I can get disillusioned with myself, my lack of energy, and feeling stymied by grief. Brett gave me an objective viewpoint of our Foundation, and from that reality check alone, today's visit was a gift. I am not sure why things happen anymore, but I do know that our connection with Brett hasn't occurred by happenstance. Knowing a little about Brett, I don't think he takes on things that he isn't passionate about or that he doesn't see potential in, so the fact that he has honed into our Foundation and Mattie's story provides me with an indescribable feeling.


This evening, Peter and I went out to dinner with Debbi, Mattie's sedate nurse angel. Debbi gave Peter and I this wonderful plaque for Christmas. Somehow when you look at this little fellow reaching up at a star on the plague, you just can't help but think of Mattie. Mattie had a special light, and though he isn't physically present anymore, somehow that light continues to shine on and it gives me the energy each day to write this blog and tell you another tidbit about his life.

We had a wonderful time connecting with Debbi, catching up on each other's lives, and also talking about the various ways cancer has changed and impacted our lives. Debbi has always been a great listener and an amazingly support to NOT just me, but Peter too. Debbi is aware of how important relationships in our lives have been permanently severed after cancer, which may seem hard to understand as a reader, especially since I am not elaborating on them here. But when you have experienced a trauma and lost your only child from such an experience, your ability to handle certain behaviors and treatment from others becomes intolerable. In fact, unlike my previous feelings (before Mattie developed cancer) on such issues, I now believe that just like a physical disease, certain relationships are also unhealthy and therefore the only way to handle them (assuming that you have tried other less drastic options FIRST) is to cut them out.

So as I sign off tonight, I can't help but reflect on what a powerfully supportive and productive day it was! I don't have moments like this often, so today I definitely took notice.

December 5, 2010

Sunday, December 5, 2010

Sunday, December 5, 2010

Tonight's picture perplexes me. The date stamped on the picture was November 30, 2005. However, as I look at my face, I am sun burnt, and Mattie and I were both wearing light colors and short sleeves. Definitely NOT something we would be wearing in November. So I can honestly say I have no idea where this picture was taken or when. However, despite not knowing the specifics, what I do know was this was a typical Mattie move. Pulling me close, having our cheeks touching, and his arm around my neck. As you can also see, Mattie's curiosity got the best of him, and his eyes were fixed on something above our heads, rather than the camera. My first reaction to seeing this picture tonight was that Mattie was looking at a ceiling fan. But honestly, I simply do not recall or have an idea of what he was looking at, which is very unusual for me.

Quote of the day: Death is nothing at all - I have only slipped away into the next room. I am I, and you are you. Whatever we were to each other, that we still are. Call me by my old familiar name, speak to me in the easy way you always used. Wear no forced air of solemnity or sorrow. Laugh as we always laughed at the little jokes we enjoyed together. Play, smile, think of me, pray for me. Let my name be ever the household word that is always was. Life means all that is ever meant. There is absolutely unbroken continuity..... Why should I be out of mind because I am out of sight? I am waiting for you - for an interval - somewhere near, just around the corner. All is well. ~ Henry Scott Holland

I went out for brunch today with my friend, Tanja. Tanja's birthday was a few weeks ago, and I wanted to make sure we found time to get together before Christmas. A holiday that seems to be fast approaching. When balancing work, a family, and life in general, sometimes planning these quiet moments to connect takes planning, but from my experience, in the end making time for such connections is always an important thing.

Over a nice meal together, we had the opportunity to talk about many things. Education being one of the topics. I find it ironic, or sad, depending upon your perspective that the issues Tanja faces in her public school in Virginia, are quite similar to the issues my lifetime friend, Karen, who teaches in New York City, contends with. Teachers get blamed for just about everything these days, and as an outside observer, I have to wonder how two very distinct and separate school systems could have the exact same problems? Naturally these schools have different teachers. Perhaps there are commonalities among these teachers, but let's be honest the issues and problems faced in our public schools today go beyond the caliber and competency of the teachers. The problem is much larger, more systemic, and unless administrators and teachers are given authority and control back to run their schools, the issues are only going to get more pervasive and extensive.

During lunch Tanja talked about the premise by which some people live their lives, and this intrigued me. Many of us believe that by doing all the "right" things in life, working hard, and striving to achieve, that this will in essence produce the given or hoped for outcome. However, what if this doesn't happen? From my perspective, having raised a child who died from cancer, life doesn't always go according to plan. In fact, you can do all the "right" things, seek the best medical attention, be vigilant as a parent, sacrifice everything to ensure a positive outcome, and in the end you fail. In our case, failure meant death (a rather permanent failure)! The question is how do you live with life and yourself when everything you believed and held true no longer makes sense? Perhaps some of my readers haven't had such a life altering experience yet, and perhaps some of you have. My hunch is those who have experienced this earth shattering reality are nodding your heads as you read this. However, those who have been fortunate enough not to have such a shock to reality, are left most likely saying...... I get what Vicki is saying, but this won't happen to me.

The trouble is if doing the "right" thing, working hard, and making sacrifices to achieve a life goal, doesn't always work (I use Mattie as my example), then what motivates us or I should say ME (since I can't speak for anyone else) to continue to adopt this life strategy? A strategy that clearly failed Peter and I! It would be VERY easy as parents who lost a child to cancer (in a very tragic and painful manner) to give up. To say the hell with doing the "right" thing! Cancer and the death of a child can leave you bitter, angry, and indifferent, and it takes great fortitude to pick up the pieces and make sense out of life again. For me this is still a work in progress and I have NO answer about what strategy I plan to adopt to lead my life, because the strategy I mentioned before (with doing the "right" thing) implies that we have CONTROL over our lives and our destiny. I no longer believe this. Some of you may disagree, and again, I remind you that we all are looking at this issue with our own lens. I have a feeling though if you spend time in a PICU or a oncology unit, around children with life threatening illnesses, and see the pain on their faces, and within their families eyes, you may reconsider my thoughts on just who is in control of your life and destiny. It is very sobering, because no child or family deserves the reality of a cancer diagnosis. When cancer strikes, you learn immediately that your life, your treatment, and the future are OUT of your control!

Tanja also shared with me a memory from May of 2009. One particular weekend, Mattie and Ann's children spent the day at Tanja's house. On that day, Mattie sat on my lap, and we swung together on Tanja's tree swing. In fact, it turns out that neither Tanja nor I can look at that tree swing now without thinking of Mattie. Later in the afternoon on that day, Mattie wanted to play a hide and seek game with Katharina (Tanja's daughter) and Abigail (Ann's daughter). However, I was with Ann's son, and Mattie needed someone to carry him so he could move around like the other children. Tanja told me today that Mattie outright asked her if she knew how to pick him up and carry him around. Tanja did, but she instead asked Mattie to instruct her appropriately. Giving him some control was a great gift because he LOST control in his life as soon as he developed cancer and had numerous surgeries. Tanja carried him around her backyard and they finally stopped at a location near her parsley, because he seemed tired and was resting his head on her shoulder. She described that feeling of Mattie trusting her and his tenderness of putting his head on her shoulder. I could picture the connection as she was talking, most likely because I understood that connection and closeness very well. Mattie was a good judge of character and did not allow just anyone in to help him. There was a short list, but I have noticed of my friends who were able to connect to Mattie in this way, this connection has left a profound impression on them! However, here is the catch about all of this. Where Mattie tired out that day in Tanja's backyard, happens to be the same location that she spotted the most beautiful, huge, and colorful caterpillars she has ever seen this year. She has lived in her house for three years, and yet this is the FIRST summer she saw these creatures. Some how you have to wonder if Tanja was given a sign from Mattie, since Mattie appreciated and related to ALL bugs! I love hearing stories about Mattie and certainly appreciate the memories that are shared with me. Memories are gifts, and the ONLY things Peter and I have left. As this holiday season is upon us, many of you have your children to turn to and to celebrate with, all we have left are pictures and memories. Perhaps this helps you put into context why the holidays are extremely challenging for us.