Saturday, December 18, 2010

Saturday, December 18, 2010

Tonight's picture was taken in December of 2003, Mattie was about a year and a half old. This was Mattie's second flight out to California to visit my parents. Unlike me, Mattie loved to fly and was a good traveler. In fact, as he got older, he was usually holding my hand on planes to comfort me rather than the other way around. Peter captured one of our many active moment abroad the plane that day. Mattie NEVER slept in transit, but made many friends in the process. On this particular flight I recall the flight attendant going to the first class cabin and she brought back a huge cookie and fresh strawberries for Mattie. In typical Mattie fashion, he handed me the cookie to eat. Mattie wasn't a sweets person but he knew early on that I was. So I must admit I benefited from many of the wonderful treats given to him over the years.

Quote of the day: Love like ours can never die! ~ Rudyard Kipling

I came across this quote tonight in the book of quotes my friend and colleague, Denise, gave me. This quote is simple, straight forward, and captures the sentiments I feel about my love for Mattie. Time is a funny thing. On one hand it is supposed to be "healing," yet I have found that it does quite the opposite of healing. Instead, time plays tricks on your brain, and in the process it can make me very upset. When you do not see the face and hear the voice of someone you love on a regular basis, you do begin to forget the specifics. This happens even when the person you lost is your child. It is a terrible, terrible fact and feeling to admit to and when I find that I have trouble remembering, I feel very guilty and sad. In fact, to say time is healing would mean on some level that it is okay for me to forget the specifics. To me, nothing is OKAY about forgetting and not remembering clearly. Despite having lapses in memories at times, one thing I will always know and remember is the love Mattie and I shared. It is a feeling I will never forget and always cherish, but perhaps that is what being a mom or a parent is all about. It is not about the specifics, it is about the feeling that is generated from the bond. Feelings are ever present and somehow create lasting memories.

I had a terrible night of sleep and I think I finally fell asleep at 4:30am. My head was pounding, my stomach was bothering me, and I had a lot weighing on my mind. So today, I have been functioning, but on such little sleep, I feel absolutely awful. Peter and I had brunch today with Robbie. Robbie was one of Mattie's favorite childlife volunteers. Robbie understood Mattie and had a solid rapport with him. We met Robbie through Mattie's big buddy, Brandon. Robbie is a professional events planner and manager and he was gracious enough to meet with us today to brainstorm our upcoming Foundation Walk on May 22, 2011. Robbie knew Mattie which is key and also understands our mission and goals. Robbie also attended both the walk in 2009 and 2010, so he is aware of what we have achieved already and is motivated to help us with the planning for this year. Ideas were flying back and forth at brunch and I found the whole dialogue very stimulating and engaging. Robbie is a delightful person to talk with and I can see why Mattie gravitated to him.

After lunch, Peter and I headed to Bethesda, MD to see the play, A Wrinkle in Time. On the way to the theatre, we drove up Connecticut Avenue. I guess I haven't done that in a while, but the drive sent me back in time. For two years, Mattie worked with his occupational therapist, Kathie. Kathie's office is on Connecticut Avenue. As Peter was driving, I was reliving the commute each week to see Kathie. I pointed out all the oak trees near Kathie's office that Mattie would stop at to collect acorns. Mattie was particular, he only collected acorns with intact caps. Needless to say, each time he visited Kathie, he always gave her a gift of an acorn. He never visited empty handed! Kathie told me once that Mattie was unique in that fashion, because most of her other clients did not think about giving her anything. I also pointed out to Peter the Starbucks near Kathie's office. Mattie was like clock work. After each therapy session, he wanted a muffin and milk. I could have brought these items with me, but he liked the whole experience of sitting in Starbucks with me. We would typically sit and since I always carried paper and pens with me, I kept Mattie busy! He loved my homemade mazes on paper and several of which I would create on the spot and he would figure them out while eating away. I wasn't expecting my reaction along Connecticut Avenue today, but it is the unexpected and little things that can trigger so much.

The play itself was written by Madeleine L'Engle in the 1960s, during the height of the Cold War. In her play, the children travel through time to a planet called, Camazotz. They travel in time to rescue their father, a scientist, who is being held hostage by the planet's leader, IT! Camazotz is L'Engle's version of a totalitarian, communistic society where there is no tolerance for individualism and differences. The essence of the story is that each of the children learn that their uniqueness is what makes them special and living in a world where you can't think for yourself or express your feelings is not only unhealthy, but it isn't human. In the end, the family is reunited together but only after discovering the greatest power that exists within each of us, love. It was a touching family story and moral message for the holiday season.

Friday, December 17, 2010

Friday, December 17, 2010

Tonight's picture was taken in December of 2002. This was Mattie's first Christmas and he was 8 months old. Right from the beginning red seemed like the perfect color for Mattie. It fit his personality and character. I remember this reindeer onesie quite well, because on the back of the outfit was the rear view of a reindeer, fluffy tail and all. If you have been following my photo comments for a while, then you most likely know who was taking this photo! Mattie was smiling and looking at the photographer, so by all accounts Peter would say I was therefore taking the photo! Peter jokes with me all the time by telling me that Mattie's attention was always on me if we were in the same room. I am not sure I agree with that, but it makes me smile anyway.

Quote of the day (From Peter's Fortune Cookie): Stop searching forever, happiness is just next to you.

Tonight's quote is not necessarily a quote. It is actually a fortune, right out of a fortune cookie. This is the second week in a row I am posting a fortune, and ironically each fortune I post happens to be from Peter's cookie. Peter's office had a holiday party tonight, and after the party we met up with each other to have dinner. Peter and I are quite lucky to live in a complex with a Chinese restaurant in our backyard. However, this Chinese restaurant has been here for decades, is owned by the same family, and is a Foggy Bottom tradition. Technically this is a restaurant, but for us, it is like our home away from home. Everyone in there knows us, they knew Mattie, and we know about each other's lives. I joke with Peter each week, that this is our, "Cheers" (you have to know and love the 80's sitcom Cheers to get my point here!). The owner is a Boston Red Sox fan, so clearly you know Peter is in good company.

Friday night dinners tend to be entertaining. Mainly because I am not focused on cooking and cleaning up, and therefore I freely sit and chat. That of course can be a mixed blessing, because you never know what topics of conversation I will bring up. Tonight, I chatted with Peter about how the death of a child can affect a marriage. It would be quite hard for such a tragedy not to impact a marriage, mainly because this unity produced a child who had cancer and died. It is impossible as a parent not to feel some sense of responsibility and blame for this, especially when you hear that pediatric cancer has genetic origins. Also tack on the fact that Mattie looked just like me, so at times I wonder how Peter handles this now that Mattie is gone. Peter and I both would agree that in the first three to six months after Mattie's death we most definitely were not on the same page about this loss. While one of us would be in pieces, the other was fine, and when one of us needed to be socially isolated, the other needed constant involvement. All couples face differences, however, such differences while grieving can be misunderstood, misinterpreted, and sometimes perceived as hurtful. Peter reminded me tonight that one night we were sitting at our dining room table after Mattie died, and we were arguing about these exact differences. I don't recall this but apparently I slammed my fist on the table, and apparently said that we just have to accept that we need different things as we grieve. We are different people and therefore have to grieve in our own way. This is not disrespectful to us as a couple, but natural as individuals. I of course don't even recall this statement, but Peter said it was at that point things began to make sense for both of us. We no longer became upset with or at each other, but began to appreciate the uniqueness of grief and the challenges associated with losing a child. I appreciated Peter talking with me about this tonight, because I think that is the key to surviving the loss of a child as a couple. It is open dialogue, acceptance of differences, and respect for each other. But do you want to know how this dialogue even began? It began because of the fortune Peter read. Apparently I am his "happiness!" I could have smiled and let his comment go, but I did not. It was the perfect way to dialogue about the journey we have been on together for over a year. A journey we will be on for a lifetime.
 

Earlier today I went to the mall, and while there, I had the opportunity to see and hear a wonderful sight! Right in the middle of the mall was the George Washington Middle School's (Alexandria, VA) orchestra providing all of us with wonderful music. The performing arts are a vital part of our world and when I see young people embracing creativity, it brings a smile to my face. Music, dance, and art are forms of expression that help us understand, make sense of, and process the world around us. The arts also provide us with skills that help us cope under the most challenging of circumstances. I am living proof of this. As soon as I heard the music, I stopped in my tracks, and I watched and listened for a while. Needless to say, it was the best thing I saw at the mall today.

While driving in the car today I heard an unusual Christmas song by Dolly Parton entitled, Hard Candy Christmas. I honestly never heard of the term, "hard candy Christmas" before, and had my own ideas and interpretations of this term. However, while searching the term on the Internet, it revealed the following explanation: "A hard candy Christmas was when a family was so poor that all they could afford was a penny bag of hard candy to give their kids (such as in the depression era). Yes, this actually used to be a Christmas treat, and still is to some, but that's in addition to other treats. And the kids in that family would love it because that would be the ONLY time of the year the family could splurge on something like candy."

Despite the significance of the term, Hard Candy Christmas as a song just spoke to me. It caught my attention because Christmas is not a happy time of year for many people. Certainly the movies, TV, and the media make it a very happy and nostalgic time of year, but for all the parents out there who have lost their children to cancer or other causes, the loss seems magnified during the holidays. In our American culture, Christmas has been portrayed as the holiday of gift giving, of social gatherings, and especially of children waking up in the morning excited to run to the Christmas tree to see what is under it for them. What happens though when this was all a part of your world at one time, and then thanks to cancer, none of this exists any longer? Christmas still exists, it is still Christ's birthday, but you no longer have a little one living with you, you no longer have gifts to buy for your child, and the excitement that can only come from a child is no longer in your life. What does Christmas look like for you now? Well frankly in a nutshell this is how Christmas has looked for Peter and I for two years now. It is confusing, upsetting, and at times it is hard not to be bitter about our situation in comparison to others around us. When I get this feeling of inner turmoil, I usually know it is best to leave my social situation, because the issue lies within me, and not everyone can possibly understand just how painful this loss is for us.

I have included a link to Dolly Parton's song, and the video of her transformation over the years is entertaining as well. I relate to her Hard Candy Christmas song, except unlike Dolly there is nothing "fine and dandy" about me.
http://www.youtube.com/watch?v=RGZ1IYRirtQ

Thursday, December 16, 2010

Thursday, December 16, 2010

Tonight's picture was taken in October of 2008. Peter and Mattie bought a new addition to their Christmas light display, a Christmas Scooby Doo! However, before the dog made it outside, it spent some time in Mattie's room. Based on the picture and how Mattie was sitting, I can tell that he completed his first limb salvaging surgery of his right arm. But the picture was taken before the second surgery, in which part of Mattie's right leg, left arm, and left wrist were replaced with prosthetics and a bone graft. The spark in Mattie's smile was still evident here, however, as the surgeries continued, along with the treatment, Mattie's spirit and body showed definite signs of sadness and pain.

Quote of the day: As a boy I thought of heaven as a glorious golden city, with nobody in it but angels, and they were all strangers to me. When my little brother died, then I thought of heaven as that great city, full of angels, with just one little fellow in it. Then my acquaintances began to die, and the number of my friends in heaven grew larger. But, it was not until one of my own little ones was taken that I began to feel a personal interest in heaven. Now so many of my friends and loved ones have gone there, that it seems I know more in heaven than on earth. Now, when my thoughts turn to heaven, it is not the gold walls I think of - but the loved ones there. It is not the place so much as the company that makes heaven seem beautiful. ~ Unknown


I selected this quote tonight because it reminds me of a conversation I was having with my friend, Alison this week. We spoke about spirituality and connecting with God after the loss of a child. I told her I imagine for parents who have lost a child, God and religion becomes a more black and white issue. Rather than shades of grey. As many of my readers know, I struggle to understand why God allows children to develop cancer, suffer through horrific treatments, and of course die. There really is no answer to such a complex set of questions, but when your life is turned upside down, and your child dies before you, you begin to question and examine everything. Mainly because NOTHING makes sense anymore, even things that you freely accepted before without question. However, I can also see the other end of the continuum. I can see that a loss of a child could potentially bring parents closer to God. I am not sure I could rationalize that before, but over lunch, we talked about the importance of there being a heaven because otherwise, what would that mean about Mattie's life? That his life ended at age 7? That he died in pain and that is it? In many ways, religion not only guides us here on earth, but it also helps us try to come to peace with the death of a loved one. It is much harder to accept death as a finality, rather than as a transition to an eternal life. I am not sure where I am with all of this, but when I read this quote tonight about heaven, it reminded me of my lunch conversation on Monday.

It snowed today in Washington, DC. For my readers in other parts of the country, you are either saying, how nice, or so what! Well in DC, a one inch dusting of snow can wreck havoc on the entire city. Panic ensues, and somehow people forget how to drive. Literally! This is one aspect about living in DC that I do not care about, which is why I dread snow in this town. Though I grew up in New York, I learned to drive in Los Angeles (where I attended high school). So I have to admit, I have NO idea how to drive in the snow. I met up with Ann today and she had the pleasure of driving with me because her car was being repaired. There were two spots in particular where I had trouble slowing the car down, since we were sliding on the snow. So while I was driving, I was getting coached on how to stop a car under these conditions. It actually could have been another episode from our ever growing adventures of Lucy and Ethel, but I must admit I find the whole snow thing unsettling.

Ann and I had lunch together and then we moved in two different directions since her children were released from school early because of the snow. Her children are on different campuses, so I dealt with one campus, and she dealt with the other. Despite my fear of snow, I managed quite well today. Driving a four wheel drive vehicle helped as well as moving slowly.   

I spent the rest of the day designing this candy cane tree you see pictured here tonight. My friend, Tina, who many of my faithful readers may recall hosted a birthday party for me in July, had been admiring the trees I made for Ann. So I decided to surprise Tina with her own tree! The shape of this tree is different from my previous ones, but there is something very magical about seeing the red and white pattern of candy canes forming a tree. It was a very good activity to do on a cold and snowy day, and I find that making these special gifts means something to me as I hope it does for its recipients. 

Wednesday, December 15, 2010

Wednesday, December 15, 2010

Tonight's picture was taken in April of 2008. This was three months before Mattie was diagnosed with cancer. In this particular picture, you can see that it was morning and Mattie had just woke up. He was in his pajamas and had been rubbing his eyes. Despite feeling groggy, he went right to his favorite item, Legos, and started playing. Naturally all helicopters need to fly in outdoor spaces, so he opened the door, and went outside on our deck. The one consistent item in his life was always Legos. Whether he was healthy or sick, he simply loved them! Once cancer struck Mattie's world, Legos became more than just a toy, they became a therapeutic tool. A tool that stimulated his mind, energized and motivated him to use his hands and arms (which was miraculous post-limb salvaging surgeries), and most importantly it was a tool that brought us together as a family while he was sick. We spent many days and months in the hospital, and Legos served as a mental diversion for all of us, and in the process, we could talk and connect as a family. Not as a family battling cancer, but simply a FAMILY. 

Quote of the day: The dead don't die. They look on and help. ~ D.H. Lawrence

I woke up this morning with a lovely e-mail from a colleague. She wanted me to know about a little girl who was born in Italy in 1930. This little girl's name was Antoniette Meo. The fascinating part about Antonietta was she died when she was six years old from Osteosarcoma. In fact, this young girl lived an extraordinary life in six short years, which is why the Catholic church may make her a saint. The story that Jean shared with me today was so intriguing that I decided to Google Antonietta. I included some information about her below if you want to read more. Antonietta once said, "I am very happy that Jesus gave me this problem (meaning Osteosarcoma) so that I may be his dearest one." That seems like a very profound statement from such a young child, but a child who clearly had a special calling and understanding about her own life. I included her picture because it was startling. It was startling because her eyes and Mattie's eyes were VERY similar.

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The Life and Death of Antonietta Meo -- (December 15, 1930 – July 3, 1937) was an Italian girl who may become the youngest saint (who is not a martyr) ever canonized by the Roman Catholic Church.


Antonietta was raised in an upper middle class household in Rome as the younger daughter of Michele and Maria Meo. She was nicknamed "Nennolina." She attended Catholic schools and stood out as an active, charismatic little girl who led her playmates in all their games, even after she became ill, and was popular with them because of her kindness. Her teachers said she was a child like other children, but stood out because of her personal charm and her sense of humor and the joyousness of her personality.

She was diagnosed with osteosarcoma, an aggressive form of bone cancer, at the age of five after she fell and injured her knee and the injury didn't heal. When her leg had to be amputated, she bore the ordeal "cheerfully." She was fitted with a heavy, artificial leg so she could keep playing with other youngsters. Catholic theologians have called her a "mystic" because the six-year-old wrote "extraordinary" letters to Jesus Christ in the last months of her life that displayed understanding and actions beyond the normal for a child of her age. "Dear baby Jesus, you are holy, you are good," she wrote in one of the letters. "Help me, grant me your grace and give me back my leg. If you don't want to, then may your will be done."

At first she dictated letters to her mother; later she wrote poems and letters herself and left each at the foot of her crucifix. In another letter she wrote: "Dear Jesus, I love you very much. I want to abandon myself in your hands. I want to abandon myself in your arms. Do with me what you want. Help me with your grace. You help me, since without your grace, I am nothing." She wrote or dictated more than 100 letters to Jesus or to the Virgin Mary, describing "holy visions" in many of them. After Mass, people sometimes saw her approach the tabernacle and say, "Jesus, come and play with me!"

Antonietta Meo at her first communion in December 1936.The child viewed the loss of her leg as a sacrifice to Jesus for the conversion of sinners. "I am very happy that Jesus gave me this problem so that I may be his dearest one," she told her father, Michele, after her leg was amputated. "Pain is like fabric, the stronger it is, the more it's worth," she told her father. She told her spiritual guide: "For an instant I lie down on my wound, so as to offer more pain to Jesus," and told her mother: "When you feel pain, you have to keep quiet and offer it to Jesus for a sinner. Jesus suffered so much for us, but He hadn't committed any sin: He was God. How could we complain, we who are sinners and always offend him?" She was eager to receive the sacraments of the Catholic Church and was baptized, made her first confession, was confirmed and made her first communion before her death. She also received extreme unction, the last rites, in June 1937.

She insisted on writing a last letter to Jesus a few days before her death, even though it was interrupted when she had to vomit. In it, she asked Jesus to take care of everyone she loved, and asked for strength to bear her pain. She finished the letter with the words "Your little girl sends you a lot of kisses." She told her mother when it was time for her to die. "In a few hours, I will die, but I will not suffer anymore, and you shouldn't cry. I should have lived a few days longer, but Saint Theresa of the Child Jesus said, "it's enough!" After the child's death, her mother had a vision of Antonietta in a glorified state that reassured her that the child was now in heaven.
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Peter and I have been dialoguing for some time now about reaching out to the Lego company. Lego has been a crucial part of our lives since Mattie's birth, and from 2008 to 2009, we owned every Lego kit on the market. When Mattie was battling cancer, Legos became our safe haven. We would Lego together as a family during chemotherapy treatments, at all hours of the day and night, and under good circumstances and often times under very difficult and trying times. In many cases, when undergoing chemotherapy and the recovery from the treatment, Mattie's immune system became severely compromised. Therefore he spent a good amount of time in isolation from others and germs. Isolation for a six year old can be devastating without something mentally and emotionally engaging. When Mattie was building with Legos he felt "normal," and it helped him to connect and talk with his nurses. Since his nurses would walk into his room, and always asked him questions about the structure he was building. When Mattie was sick, talking to him was problematic. He did not want to hear ANY noise, and conversation made him upset. However, Legos helped to draw him out, to engage him, and to work collaboratively with others. Frankly, I have no idea how we would have survived 15 agonizing months without such a therapeutic tool.

Mattie spent most of his treatment time in the hospital, but there were periods of time when we were released for a week at a time to be at home. Mattie looked forward to leaving the hospital only because that meant he could take a car ride to the Lego store at the Tyson's Corner Mall, VA. Mattie was a familiar visitor to the store, and the employees at the store got to know him. Mattie stood out since there weren't many six year olds in a wheelchair with a bald head, connected to all sorts of pumps, strolling through the store.

Tonight, Peter and I reconnected with Liz, the Assistant Manager at the Tyson's Corner Mall store. I say reconnect, because in August of 2009, we had the opportunity to meet Liz. This store held a special workshop for Mattie and his buddy Abigail (Ann's daughter). After store hours, the store invited Mattie and Abbie in to build anything Mattie wanted to create. There were two special Lego builders on hand to help them, and that night in many ways was magical for Mattie. I think perhaps it was for Abbie as well, since on the car ride home, she called us to say that was the "best night of her life." Needless to say Mattie was beaming to hear this. Linda (Mattie's childlife specialist at the Hospital) arranged this evening for Mattie with Liz's help. Unfortunately Mattie did not live long enough to have a wish granted through the Make-A-Wish Foundation, but in so many ways, this was a special wish that was granted through Lego. One neither Peter or I will ever forget.

We have reached out to Liz tonight by phone. Liz remembered us and Mattie quite well. In fact, Liz read Mattie's blog and was VERY familiar with all the wonderful structures he created in a year's time. Liz is working to help connect us with local Lego groups, groups that would be willing to run creative activities and events at our upcoming Pediatric Cancer Awareness walk on May 22, 2011. Liz is also going to approach Lego corporate for support of our cause. As I mentioned in the call tonight, I would love to partner with Lego and start a therapeutic program for pediatic patients. I realize the complexities of such a program, but after spending over a year living in a hospital, there is no other toy that came through the Hospital doors that was as engaging, intellectually stimulating, or creative as Legos. In addition, I also look at this toy/tool as having major psychosocial consequences. Building with Legos encourages teamwork, communication, and a discussion of issues. It is the perfect play therapy tool, and with children, toys have huge therapeutic value. In fact, the mode of therapy for children is PLAY, not talk therapy. I am not sure how to get this idea off the ground, but it is definitely something I am very passionate about.   

Below are some slides Peter created to share with Liz. Some of you may recall the wonderful Lego creations featured here. The first slide was a structure Mattie created for Linda (Mattie's Childlife Specialist). Linda asked Mattie to envision what a hospital room should look like. He took it upon himself to illustrate his vision in Legos. Mattie's hospital had a private outdoor space for children with cancer. This space had a fountain, birds, a treehouse, and a swing. The actual room, was thoughtful. It had a desk in it for my computer (he was always thinking about me!) and a huge shower. He heard me complain enough about sharing showers, that he thought his ideal room would have a shower that we did not have to share with the family next door to us.

The second slide showed Mattie's Lego alligator. One weekend, while in the Hospital Mattie sent Peter to the Lego store for ONLY green legos. He had it in his mind that he wanted to build an alligator from scratch. As you can see he was very successful. However, as you can see from the other pictures, Mattie built many, many things over the course of his treatment.

The third slide shows Mattie's love for vehicles. Vehicles of ALL kinds, as well as things that moved. As you can see Mattie built Lego cars, planes, trains, and a carousel! Also notice that Mattie and Peter built the Taj Malhal, which contains 5922 Lego pieces. This structure and many other Mattie creations are all over our home. Completely intact, just how Mattie left them. 

The final slide was taken in August of 2009, at the Lego Store in the Tyson's Corner Mall. We had learned that Mattie's cancer was terminal in July, and Linda helped to arrange this special night for Mattie. That night Mattie chose to build a New York City taxi. He had seem several of them, and even rode in them while he was being treated at Sloan Kettering in New York. In the pictures, you will see Mattie with Abbie, along with two expert Lego builders, Jared and Brandon! 

I would like to end tonight's posting with a picture of a beautiful candle lit star. This star sits on Lana's mantle. Lana was one of Mattie's favorite preschool teachers, and in fact Lana's son is a member of the VP 26 Tridents. The amazing group who had a very successful fundraiser for the Mattie Miracle Cancer Foundation in Florida. Lana wanted me to know that she lit this star in Mattie's remembrance this past Sunday (on Worldwide Candle Lighting Day), and his star will continue to sit on her mantle throughout the holiday season. Seems like a very fitting and touching symbol for my "Mattie Moon."

Tuesday, December 14, 2010

Tuesday, December 14, 2010 -- Mattie died 66 weeks ago today.

Tonight's picture was taken in April of 2008. Three months before Mattie was diagnosed with cancer. As you can see from this picture, Mattie woke up that morning, and wanted to stay in his pajamas. He received this red and white remote controlled car for his birthday, and in true Mattie fashion he wanted to take the car apart and examine it. So out of tinker toys he built a car lift. What you need to understand is that at a very young age, before one, Mattie could hold a screwdriver and actually use it. At one year, he was taking apart ALL of his toy cars, and the scary part was he could actually reassemble them. When I first saw him do this, I realized this was very unusual developmentally. But it spoke to how Mattie's mind worked. He had a very mechanical brain, and we always joked that he was going to be "my engineer." This sight before you was just too funny to me, and that morning I grabbed my camera and captured the essence of Mattie. As today begins the 66th week that Mattie is gone from our lives, I wanted to share a part of Mattie's character with you that you may not have been aware of.


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

I wholeheartedly believe in the sentiment expressed in this quote. At the end of the day, what matters is who you cared for and loved. Not what you have accomplished, not what job or jobs you had, and certainly not the earthly possessions you have accumulated. Certainly these things may help you feel good, they may even make you feel important. But when you are facing illness or life and death issues, NONE of these things matter. Your perspective changes, and though I am not "old" per se, Mattie's death has provided me with deep insights. Insights I never expected to gain until later in life. Which brings me to a conversation I was having through e-mail today with my friend and colleague, Nancy.

The premise of our conversation focused upon motivation. What motivates one person to care for another person? What motivates one person to be friends with another person? Better yet, do we extend ourselves to others, because we expect the same treatment in return? Well certainly it is healthier to have two way conversations and two way relationships, but based on the circumstance or the dynamics, this isn't always possible. So then what? I know in my counseling field of specialty, which was working with family caregivers of older impaired adults, two way communications and actions cease to exist. The impaired older adult may be physically and/or cognitively impaired, making such feedback impossible for the caregiver. That may seem like a poor example, because standing back from the situation, I am sure it is easy to rationalize that if your impaired mom or dad needs help, you give it to him or her, and may not necessarily seek compassion or kindness in return. In theory such altruism exists. Yet, as human beings we all need love, kind words, thoughtfulness, and understanding in return. When we do not get it from those closest to us, it is painful and we can easily begin to resent our connections and our friendships. As always, my conversations with Nancy are stimulating and they give me perspective.

I spent a good part of the day helping Ann with wrapping gifts. Ann seems to appreciate my level or creativity and based on all that I know she balances, if I can help her, I try to. However, tonight I stepped back from the process and couldn't understand why I was feeling sad and agitated. It came down to this, no matter how many gifts I wrap, no matter how many Christmas decorations I can surround myself with, to me it just isn't Christmas. Christmas is naturally a very spiritual time of year for Christians, in which we celebrate the birth of Jesus Christ. The only son of Mary, who was destined to die in order to grant us eternal peace and salvation. I can understand and still appreciate the spiritual side of Christmas. However, what I can no longer appreciate is the feeling that Christmas once provided for me. There is NO joy, there is NO happiness, there is NO warmth, nurturing, and love for our threesome. Because there is NO threesome left, only two. So as I was helping Ann, I realized just how different and unhappy my life is, and may continue to be for some time. When I got home and told Peter how I was feeling, he wasn't shocked at all by what I was telling him. Mainly because he feels the same way. In fact, Peter and Ann kept telling me today that it was freezing outside (they are both New Englanders, so when these folks tell you it is cold, it is COLD!), but to me, I was numb to the cold. I did not like it, but when the cold doesn't bother me, it speaks to me being overloaded with other emotions.

Today was also Ann's youngest daughter's birthday. As many of my readers know, Abbie (Ann's daughter) became a very good companion and friend to Mattie when he was battling cancer. As is typical of any 9 year old, she was so happy because it was her birthday today. In a way, Abbie is my benchmark, as she gets older, I am able to count how many birthdays Mattie has missed. I feel torn on these happy days, because naturally I am grateful that Abbie is well and can have another special birthday, but on the other hand, it makes me deeply sad to know Mattie will never have this moment, and neither will we. Even writing this tonight makes me feel uneasy, but my feelings are very genuine, honest,  and very conflicted.

Last night I received two pictures from my friend, Carey. As I reported in last night's blog, I was introduced to Carey electronically in August of 2008. She reached out to me, because her sister was reading Mattie's blog. Carey's daughter, Lauren, who is now 13, was diagnosed with osteosarcoma a month after Mattie (August 2008). Since that time, Carey and I have been in e-mail contact, and we would share horror stories with each other while both of our children were in-patient. I had the opportunity to meet Carey and her family last December at the Candlelighter's Christmas Tree lighting ceremony.

My faithful readers are familiar with the wonderful fundraising program Lauren started at her middle school in PA. She created the successful program called, Bows for Hope. Lauren developed this program as part of a course assignment, however, what makes her very special and unique is that she took an assignment and brought it to life. She energized her friends and her entire school community. They sold 100s of bows last year and the proceeds from these Bows were given to the Mattie Miracle Cancer Foundation. The bows are made out of duct tape, and as you can see from this picture, Lauren uses only the most interesting colors and patterns of duct tape. Her bunny, Abby (sitting behind her on the floor), is even in the mix. Lauren has continued the production of bows this year, and is still raising money for the Foundation. She is an incredible young lady in my perspective who is deeply passionate about helping families touched by pediatric cancer. Her awareness campaign at her school is simply awesome, and what I admire about her is that she is a teenager who cares about helping people and takes the initiative to make a difference.

This weekend we were unable to meet up with Carey and her family to attend the Candlelighter's Christmas Tree lighting, but I was happy to receive this picture of Lauren and her brother, Matthew taken at Union Station in Washington, DC. When I look at Lauren, she looks like the picture of health, it is almost hard to fathom what she has been through and continues to overcome. Her brother, Matthew, has many of the same interests as Mattie, and I will never forget the birthday present he sent Mattie in 2009. It was a magic kit, that had trick things in it like fake "poop." Totally up Mattie's alley and he loved scaring me with it. So as I sign off tonight's blog posting, I felt it was important to share the face of a young girl who is working hard to overcome osteosarcoma, and who continues to think about ways to help others as they face the pediatric cancer battle for the first time.

Monday, Decmeber 13, 2010

Monday, December 13, 2010

Tonight's picture was taken in May of 2008. Only TWO months before Mattie was diagnosed with cancer. When I look at this picture it almost seems impossible to believe that inside that cute body was a disease that had already taken an aggressive hold over Mattie. I recall the day this picture was taken. It was a Friday afternoon. Peter got home early from work, and Mattie was very ready to do something. So we took him on a Potomac River cruise. Mattie enjoyed that day, and another family on the boat trip snapped our picture along our journey. I am so happy they did!


Quote of the day: Did I love you? Surely yes. Did you know? Absolutely. Was it enough? Never. Is it over? Yes, forever. Will it end? Not ever. I bid you goodbye and love you still, dancing in the joy of what we had. Crying in its loss, praying for your soul. Not knowing if you need it. But believing it is a link. ~ Clarice Hausch


I received an email this morning from my friend, Charlie. Charlie mentioned how our radio station has been having a St. Jude's radiothon for the past two days (from which the station raised over $300,000 for St. Jude Children's Research Hospital). Ironically, neither one of us could really listen to it this year. You would think since I lived this experience, that I would be thrilled that such publicity and fundraising was happening on the air for pediatric cancer. My answer to this is partly. I suppose in many ways the radio and the tv have become modes of escape for me. Therefore, when I am hearing cancer stories and crying parents on the radio, I find this disconcerting. For two days, I lost one area of my life which I usually turn to for a diversion, free from cancer.

This morning was one of those days where Mattie's death hit me. Bluntly stated, it is hard to see pictures of Mattie healthy and then reflect on the fact that his little body was cremated and all I have left of him is his ashes. It seems too surreal at times to believe that this happened to Mattie and to us. Yet the lack of his presence forces me to accept the impossible.

As I told my friend Alison today, I was happy we actually met for lunch. She forced me in a way to get up and out. At lunch Alison and I talked about many topics, and over lunch she gave me several meaningful gifts. One gift was a beautiful glass butterfly, which I plan on using as a suncatcher. Butterflies mean a lot to me, and therefore as I look at this butterfly this winter, I will be thinking of Mattie. The second gift was an origami Santa. Origami cranes became a symbol for Mattie in the hospital. His IV pole and room were filled with praying cranes, thanks to our friend, Junko and her mom. So today's origami Santa immediately reminded me of Mattie, and I placed this fellow right next to Mattie's ashes, because it just seemed like the right place to put Santa. The final gift was a beautifully scented candle, but it was the name of the candle that caught our attention. The candle's name was "comfort and joy." Alison felt like I needed both of those things. When you think about it, Alison has shared with me HOPE, comfort, and joy. Seems rather symbolic. Many of my readers may recall that the first time Alison met me in the Hospital, she took off the necklace she wore around her neck, and gave it to me. The message on the necklace was simply stated, with one word, HOPE. I wore that necklace each day that Mattie was alive, until the day he died. Alison's gifts were very meaningful to me, but the true gift is her friendship. We laughed and cried and basically covered many emotions together at lunch. But as Alison reminds me, I am still grieving, and grieving the loss of a child doesn't stop after one year. VERY TRUE, and I appreciate her openness to talk about things that aren't always easy to talk about.

I received a lovely e-mail tonight from my friend, Carey. Carey's daughter is Lauren, a 13 year old who is an osteosarcoma survivor. Lauren and Mattie were diagnosed about a month apart from each other. Some of my faithful readers may recall that Lauren is the young lady who came up with the innovative and creative program at her middle school entitled, Bows for Hope. Lauren sold hundreds of bows last year, and the proceeds raised from this incredible project went to the Mattie Miracle Cancer Foundation. On Sunday, Lauren and her family attended the Candlelighter's Tree Lighting Ceremony at the National Post Office Building in Washington, DC. Some of you may recall that we went last year to this ceremony and we had to leave early, because I landed up in tears. This year, like last year, we had a gold bow placed on the tree in Mattie's honor. However, last year, I never could find it on the tree. A tree which has hundreds and hundreds of bows on it. Filled with names of children who have/had cancer. This year, Carey immediately found Mattie's bow and she sent me a picture of it! After Christmas the bows are mailed to the parents of the children. I use the bow I got last year as my bookmark. That bow means a lot to me, so much so, that when I was flying from Los Angeles to DC in October, and lost the bow on the plane, I basically tore my row and the row behind me apart until I found the bow. I appreciate Carey sending me this photo, and I am happy that Mattie's memory is alive and well on this tree. Though if I had a choice, I rather have him than the bow any day.

Worldwide Candle Lighting Day

Sunday, December 12, 2010

I purposefully picked tonight's picture because it shows Mattie surrounded by his friends. They were his closest friends, and yet they were of vastly different ages. The picture was taken during the Mattie March, which was in April of 2009. Behind Mattie you can see his big buddy, Brandon, pushing Mattie's wheelchair, and along side Brandon was Robbie. One of Mattie's favorite hospital volunteers. Despite Mattie and Brandon's age difference, they related to each other and understood each other. When Mattie was going through cancer treatment, he literally wanted to shut the world out, and really preferred to isolate himself from his friends. However, he usually let Brandon in. At times I wonder how the loss of this connection impacts Brandon. But as Toni (Brandon's mom) tells me, Brandon feels close to Mattie, when he is in my presence. Walking along side the wheelchair in this picture was Zachary. Mattie and Zachary met each other in preschool, and for some reason, even cancer could not sever this relationship. I saw Brandon and Robbie tonight, and somehow this picture seems very fitting in capturing the memories I have of these two young men. 

Quote of the day: When you are sorrowful, look again in your heart and you shall see in truth you are weeping for that which has been your delight. ~ Kahil Gibran

Tonight's quote seems quite appropriate as it reflects how I am feeling. Peter and I were invited to attend the Fifth Annual Georgetown University Hospital Jingle. The Jingle is a major fundraiser for the pediatric oncology program at the Hospital. It is an event that features wonderful foods, a silent auction (with incredible items including trips abroad, jewelry, handmade items, etc.), live music, an activity room for the children, and so much more. One category of items in the silent auction is designer Christmas trees. When I entered the hotel, I saw the tree entitled "Secret Snow Village," which I am standing beside in this picture. It turns out that this tree was designed by Shazalynn Cavin-Winfrey. Shazalynn is a mom at Mattie's school and in fact, her son and Mattie were in the same Kindergarten class together.

During the evening, Peter and I got to chat with Shazalynn, and she shared tears with us over Mattie's death. Shazalynn is on the executive committee of the Jingle, and we learned more about the year round activities of this group.

Peter was standing in front of a tree entitled, Flights of Fancy. This tree was designed by Martha Stewart. I happened to love the bird theme on this tree.

At the event, we saw Dr. Aziza Shad (the beneficiary of tonight's event, and the director of the pediatric oncology program at the hospital), Debbi (our sedation nurse angel), Anita (one of Mattie's HEM/ONC nurses), Linda (Mattie's childlife specialist), Katie (one of Mattie's favorite HEM/ONC nurses, who he affectionately called "Dorothy" for her shiny red shoes), Sharon (Mattie's chaplain at the Hospital), Mary (one of the social workers), and Tracy (the head of the art therapy program at the Hospital).

I spent a good portion of the evening with Toni and Jim (Brandon's parents), and of course Brandon. In many ways, I am not sure I could have stayed through this event without Toni's presence. Through Mattie and Brandon's battle, we lived together in the hospital, saw each other under the worst of conditions, and also faced many of the same challenges and had the same outlook on certain things. So unlike others in the room tonight, who have NO idea of what Peter and I survived, Toni and Jim know quite well!

Last night, I text messaged Dr. Shad and reminded her that today is the 14th anniversary of Worldwide Candle Lighting Day (in which candles are lit at 7pm in memory of children who have died). Clearly the Jingle is about life, survivorship, and the celebration of a successful pediatric oncology practice. Acknowledging children who have died doesn't seem to fit in nicely at this event. But at 7pm tonight, Aziza was on stage, and told the audience of hundreds about the significance of the day and 7pm. She told the audience that the goal is to save every child's life, but there are some children who do not make it. She invited Peter and I on stage to light a huge candle and asked the audience for a moment of silence. After the moment of silence Aziza asked me to address the audience. Before I spoke, a little boy came up to me and handed me a huge bouquet of flowers. He was a pediatric cancer survivor and his gift was very touching. I had no idea I was going to have a chance to say something tonight, so I had to wing it! Lord knows what came out of my mouth but I know I was speaking.


The Jingle was a well thought out and executed event, however as a parent of a child who died from cancer, it at times can be overwhelming. It is hard to see the other children running around, smiling, and dancing. In a way, I at times feel like I am part of a different community. Yes we all went through cancer, but there is a difference between survivorship and those children who lost their lives. Therefore as tonight's quote so aptly states, I weep for what brought me great delight, Mattie. Being around pediatric survivors makes me feel uneasy and also highlights my differences and feelings. I do not like to acknowledge this feeling within myself, but it a real and very unsettling.

I would like to end tonight's posting with this beautiful picture and message from our friend, Debbie. Debbie's son and Mattie were in the same Kindergarten classroom. Debbie is one of my faithful readers and as I told her today, her picture made me smile. There are times I feel as if Peter and I are fighting this grief battle alone, and just when I think this, I get a message like Debbie's that makes me pause and understand that Mattie's memory lingers on in those touched by his life. Debbie wrote, "During Advent, we are lighting candles with our children every day as we watch Mary on the donkey making the journey to Bethlehem and we wait for Jesus's birth. Tonight, we lit the candles at 7:00, to coincide with the Worldwide Candle Lighting. In addition to our twelve Advent candles, we lit a candle in memory of Mattie, which will stay lit for an hour. Please know that we remember Mattie still and that you and Peter remain in our hearts and prayers."

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

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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