Saturday, December 17, 2011

Saturday, December 17, 2011

Tonight's picture was taken in December of 2007 in Deerfield Beach, FL. We celebrated Christmas that year with my parents and we met them in Florida. Mattie loved Deerfield Beach. It was family oriented and there was a ton of interesting nature activities for him to do and explore there. He also loved this area because it was filled with drawbridges. Mattie loved watching the bridges go up and down, seeing the car traffic stop, and boats pass by. That particular day there was a terrible storm, filled with rain and wind. After the storm was over we went out for a walk and Mattie was intrigued by the large palm frond that fell to the ground. As you can see this leaf was bigger than us. Mattie loved this frond and we brought it back to our hotel room. In fact, he wanted to take it home to DC with us. But I convinced him that we couldn't take the whole leaf. So I broke off some of the husky base part of the leaf and we brought it home. This husk, like so many keepsakes, can still be found in Mattie's bedroom even today!


Quote of the day: Not knowing when the dawn will come, I open every door. ~ Emily Dickinson

Our day was filled with chores as we prepare to leave for Ft. Lauderdale on Sunday. We are meeting my parents in Florida and will embark on a 10 day cruise starting on Monday. Naturally with leaving town this means that the blog has to be set up for 12 days while I am gone. That alone took me three hours to accomplish. The most unpleasant part of the day other than packing, which I absolutely hate, was capturing Patches, caging her and bringing her to the vet. I always dislike this part of going away, because I know how much she relies on Peter and I from day to day. She is a sickly cat, filled with all sorts of quirks and anxieties as well. But based on her medical history, she needs to be monitored and for her safety I know she is better off at her vet's office. Mind you this office knows Patches VERY well from the time Mattie was battling cancer. Patches lived there for over a year, and she is treated like a queen. She is given free time to roam around out of a cage and also is played with on a regular basis. When I enter this vet's office, they aren't at all happy to see me, but as soon as they see our feisty calico, they all swoon over her. This is exactly the right place for our 15 year old cat.

In the midst of packing today, I received several emails from friends. That helped to keep me sane. The content of discussion ranged from cookie making, TV shows, to holiday shopping! However, my friend Mary Ann sent me a very disturbing article. The story was reported yesterday, and I must have missed it in the news. So I am happy she sent it to me. Fortunately the story has a happy ending, but it could have cost a two year old child her life. This child was being treated at Walter Reed Army Hospital for Leukemia and received an OVERDOSE of chemotherapy, specifically Doxorubicin. Which is toxic under the best of circumstances. I remember this RED poison very well, since it went into Mattie's body for many months. However, there must be checks and balances in a hospital setting in order to avoid such drastic mistakes. Fortunately with Mattie's situation, we too experienced the pediatric pharmacy at the hospital sending up the wrong chemo dosage for him, but NO chemo ever went into Mattie without two nurses double checking the dosage. It was Mattie's nurse who caught the error and avoided Mattie getting a dosage that would have been appropriate for a 6 month old, not a 6 year old. When I read this current story, I was deeply disgusted for this family. The battle is hard enough, but mistakes like this must be learned from so that NO child is accidentally given a dosage that does more harm than good. In this hospital's case they are lucky that the child survived this horrible accident.

Toddler Given Chemo Overdose at Military Hospital (December 16)
http://www.wusa9.com/news/article/179991/158/Toddler-Given-Chemo-Overdose-At-Military-Hospital

I am signing off for today. I know several of my readers have already told me they will be awaiting pictures and commentary from our upcoming adventure. So the next time you hear from me will be from Ft. Lauderdale.

Friday, December 16, 2011

Friday, December 16, 2011

Tonight's picture was taken on December 19 of 2007. Mattie was in kindergarten and in this particular picture Mattie was posing by our Christmas tree before heading to his school's lessons and carols concert. I remember Mattie's excitement over that day. First of all dressing in a tie and jacket was a big deal for him but secondly, he liked the song his class was singing, and though he did not realize it, he had hummed it so often in the car and at home, that I knew exactly what song he was singing by the time he got on stage. As Ann was headed to Mattie's school today to watch lesson and carols, in my mind I was transported back to 2007. I remember videotaping Mattie's portion of the concert and it was simply adorable. I had no idea that I would only be seeing one of these concerts ever. It is hard to believe this face is no longer with us and at times like today, reflecting on this loss is beyond painful.

Quote of the day: In the silence of listening, you can know yourself in everyone, the unseen singing softly to itself and to you. ~ Rachel Naomi Remen

Tonight was Peter's office holiday party at the Willard Hotel in Washington, DC. The party was a black tie event and I have been planning for this event for a few weeks now. Typically I wear black to a formal event, but I am VERY tired of wearing black. It depresses my mood and I don't need any help. So for this party, I purchased a dress with a color. I wanted red for the holidays and because it is mine and Mattie's favorite color. But I landed up with a purple dress, another favorite color of mine. I spent part of the afternoon visiting Celina. Celina is my hairdresser, who owns her own salon in DC. Celina has been very generous to the Foundation and today her and her husband (co-owner of the salon) let me know that they belong to a local cultural group which is looking for a non-profit to support. Celina and her husband recommended Mattie Miracle and in the New Year, I will be working with the president of this local group to plan a party at the salon, in which all proceeds will go to the Foundation. Celina and her husband's kindness never cease to amaze me. They let me know that I am a strong woman, who is accomplishing important things, and they want to support me in this process.

Experiencing their kindness today truly touched me and one thing I do know is while I am there, they make me feel important and cared for as a human being. To me Celina is a special person, which is why I have followed her to three different salons, until she finally opened her own. To me, life is about connecting with people. It doesn't matter if you are my friend, teacher, doctor, or hairdresser because chances are if I can't connect with you, then most likely I won't be returning to this relationship.

Right before leaving our home to go to the Willard, Peter snapped a picture of me.

When we arrived at the hotel, I admired the lobby and how it was decorated for Christmas. I wanted to take a picture by the tree. While Peter was snapping a picture of me, a woman came up to Peter and said we looked too nice together not to have a picture taken. So she was kind enough to take a photo of us.

While at the party, I had the opportunity to chat with many of the people Peter works with on a daily basis. It is nice to put faces to names! Peter's boss' wife and I have gotten to know each other over the years at these business gatherings and we are fond of each other. She wanted me to know that she thinks of Mattie daily and that her two sons ask her questions as to why Mattie died. They remember Mattie at their house and they do not understand how a child who looked so healthy could get so sick and die. Excellent question! Apparently these boys cherish their Mattie t-shirts which remain hanging up on display in their house. I was truly touched by the stories I was hearing and also admired her courage for talking to me about Mattie and my loss. I could see in her eyes and through her hugs that she just felt deep sorrow for us and wasn't sure how we continue to move forward. Of course I don't know either, but it most definitely was helpful to hear this reflected through another mother's eyes and heart.

Thursday, December 15, 2011

Thursday, December 15, 2011

Tonight's picture was taken in December of 2008. Mattie was sitting on his hospital bed in our living room and around his neck was the Christmas wreath Debbie, his art teacher, and classmates made Mattie for the holidays. On several of the paper leaves were messages to Mattie. Mattie loved this wreath and even today, this wreath remains hanging on the inside of our front door.

Quote of the day: The mystery of life is not a problem to be solved but a reality to be experienced. ~ Art Van Der Leeuw

For parents who lost a child to cancer, we learn quickly that there really is no mystery to life. Because there is NOTHING to be solved! In fact, we know all too well that life is beyond our control and that in all reality one must live in the moment, in the present tense. This is NOT an easy place to live in, especially when one has his/her health and the basic needs of life. Human instinct is to live for the future, to plan, and to try to analyze or predict one's journey and the journey of one's family. The mystery or meaning of life looks very different however in the aftermath of cancer.

I am a loyal 98.7FM listener and during this time of year, WMZQ always has their two day long St. Jude Radiothon. I must admit that if Mattie's cancer hadn't impacted my life, I am NOT sure I could handle listening to two days worth of this broadcast. The radio station commits to raise around $300,000 for St. Jude each year, and in the process throughout the two days you hear heart wrenching stories from parents and families impacted by childhood cancer. The focus naturally is on families being treated at St. Jude. One thing that captures my attention always is the fact that St. Jude TREATS EVERYONE in the family, NOT just the child! Clearly St. Jude is a special place, since families come from all over the world to receive cutting edge treatment and pay NOTHING for the services not covered by insurance and NO child is ever denied treatment because of the family’s inability to pay.

I can assure you that St. Jude is definitely a very unique experience. Because for the majority of us, cancer is VERY, VERY costly. The bills are endless! The cost of Mattie's overall care for 15 months of treatment was several million dollars. Which is why 50 percent of childhood cancer families go bankrupt (because insurance doesn't cover everything for many families), which is an additional trauma and stress to contend with on top of battling cancer.

But keep in mind that you can't just decide to get treated at St. Jude. You need a physician referral and have to generally have a disease currently under study and are eligible for a current research protocol on clinical research trials. I naturally fully support the work of St. Jude's, but I can't help but want to scream when I hear that money is being raised for cutting edge childhood cancer research. I know research must be done to learn more about the different forms of childhood cancer, but I am also a realist and understand that in several decades that have past little to NO progress has been made on new and effective treatments for children. Of course if you lose a child to this disease the notion of a cure seems beyond comprehension and also not tangible.

The main thing that I did capture from the radiothon today is I could relate to the parents who spoke. One father said there are NO words to describe how if feels when you learn your child has cancer and even worse when you hear the words that there are NO other treatments available. In the midst of listening to the radio, I heard a song that captured my attention. Its title is "One of those lives" by Brad Paisley. I have never heard it before but the song is in honor of the brave children and their families fighting cancer each day at St. Jude. I attached a link to the song so you could hear it and what I like about this particular youtube video, is you can actually read the lyrics of the song. I think the song speaks for itself, because once you hear a child has cancer, it puts the traffic, the unkind boss, and other life troubles into great perspective.
http://www.youtube.com/watch?v=lKTmUotx97c

This afternoon, I went to pick up Ann's children from school since she had to go out of town for the day. As I drove back to Mattie's school it was a surreal experience. It was hard to see many children from Mattie's grade running around and getting picked up. However, in the midst of these feelings, I saw my friend Ellen (Charlotte's mom), and we began text messaging each other. Somehow that helped tremendously, even though we never spoke about Mattie. As the afternoon wore on, I had to help Abbie (Ann's youngest daughter) get ready for gymnastics which meant that her hair needed to be put up and back. Not unlike Mattie, she did not want her hair brushed and we began running around the house after each other. None of this surprised me, since I had many of these moments with Mattie. Mattie taught me that in these kind of moments, you have to make light of the situation. So literally since Abbie was doing headstands to avoid getting her hair done, I began using the brush on her legs and tummy. I told her if I couldn't brush her hair, I was going to brush the rest of her. I caught her off guard and she thought this was hysterical. Just like Mattie! By the time I wore her out from laughter, I was able to brush her hair. I learned the tricks of the trade by raising the master of complexity!

This evening, Peter and I went out to dinner with Deborah. Deborah is the palliative care professional who invited us to speak at the DC conference in November. I have enjoyed this new found connection and Deborah understands loss quite well both from a professional and personal standpoint. We met Deborah at a restaurant in Chevy Chase, MD, and this used to be another Mattie favorite. Mainly because it has a toy train that goes around the perimeter of the inside of the restaurant. For many of the past visits that we took Mattie, the train wasn't working, and he was disappointed. But it is fully operational now, and each time the train passed us this evening, I thought of Mattie.   

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "Vicki, for some time now the blog has been full of details about your life before, during, and after Mattie's diagnosis. Last night's entry was about you and you were so clear in this writing. Your use of capitals to explain your emotions right now were full of power and I could feel your frustration and loss so completely. Over the years we have discussed Mattie and how you feel robbed. He was, is, and will always be your focus. That is what parents do, even when they lose a child. Some days I wonder just how you do take care of so many issues, responding to Mary, responding to my emails and others, and I think part of the reason is you are a survivor. Life isn't filled with promises of joy and complete happiness. We are challenged by the inconsistencies of life and the fragility that comes with loving and reaching out to others. The quote last night made me pause as what lies within so many is thinking of themselves. You, my friend, take care of others and now have to take care of yourself and Peter. It doesn't make any sense, this disease. It hurts and disrupts families. It causes pain, physically, emotionally, and mentally. It tests the bonds of friendship and love. It is often an unwanted partner that just won't go away. I hope the days at sea will offer some relaxation and health for you both."

Wednesday, December 14, 2011

Wednesday, December 14, 2011

Tonight's picture was taken in April of 2008, only three months before Mattie was diagnosed with cancer. As you can see he looked like the picture of health! Mattie was attending his school's spring festival and pictured with him was his buddy Campbell and Campbell's sister, Livi. I am so happy I took extensive photos of Mattie's life. I never thought I would be referring back to them in this way, at the time I simply wanted to document Mattie's life for posterity. When your child dies, so do your plans, ideas, and expectations for the future. Mattie was our future, and his cancer and death has forced us to live in the present, and for the most part that is as good as it gets with me. I do not like looking or planning too far into the future, because as I have learned the future is NOT guarented to any of us.

Quote of the day: What lies behind us and what lies before us are tiny matters compared to what lies within us. ~ Ralph Waldo Emerson 


I spent a good part of today doing all sorts of chores. However, during the lunch hour, I went to visit Ann's mother, Mary. I wanted to say good-bye to Mary before I leave town on Sunday and I also wanted to give her a gift or two in person. Certainly I could have just left Mary's gifts with Ann and could have rationalized that I was too busy to make the time to see her. However, as I turn to Emerson's quote, I reflect on the last four words.... what lies within us! These are powerful words, because it is what lies within us that serves as our compass and moral guide. At the end of the day, I am happy I went to visit Mary, and let her know that she wouldn't be seeing me for a while. Naturally she may not remember this, but again this isn't the point. In many ways the holidays do not mean the same thing to Mary as they once did. I relate to this intensely. She isn't only contending with the loss of her son, but she is dealing with the complexities associated with her neurological disease. Both are losses and require a huge adjustment. In the recent years, I have had the opportunity to spend several holidays with Mary at Ann's house, and at those events we tend to stick together. I think people assume because Mary is older that she is used to losses and these are just natural. However, if you ask Mary questions about the loss of her son or the loss of her physical mobility, she will actually have a lot to say on both matters. I will miss my time with Mary this season, but I know she also understands why I can't celebrate the holidays with her family.

Today was Ann's youngest daughter's birthday. Naturally that is a happy occasion but for me, it brought about sadness. Certainly not for Abbie, but for the simple fact that I will never see Mattie turn 10 years old. Mattie died at age 7, yet his friends are all turning 10 this year. Life continues, yet not for us. I have missed seeing Mattie turn 8 AND 9 AND 10!!!! In a way I have to keep myself in check because my feelings can take over and make me irrational. I try never to intentionally misdirect my feelings, but there are moments I want to SCREAM.

While everyone is happy, celebrating birthdays, and upcoming holiday gatherings, I am left to reflect on the fact that my family has a deep and lasting hole that will be forever present in our lives. Some of you may be reading this and saying..... that makes perfect sense and I am being too hard on myself! That may be true, but on the other hand it makes it very difficult to sometimes function in the real world. It is hard not to feel bitter, resentment, and feel as if others can't possibly understand how I am feeling. How do all these feelings get resolved and How can I have a friendship with people who have children Mattie's age? I DON'T KNOW! But I do know that friends who do not acknowledge my feelings or understand how all these missed opportunities could potentially make me feel, only magnifies the pain. As human beings we have the basic need to be understood, heard, and appreciated and having a friend grieving the loss of a child is hard on a relationship. Because it requires much more reassurance, communication, and openness to honest dialogue and feelings. My feelings are my feelings and I can't change them, but how others respond to these feelings is what can make the night and day difference in dealing with pervasive grief. NOT responding and NOT acknowledging my pain and heartache only makes matters worse. Talking about it will NOT cause pain, the pain is already THERE!

Tuesday, December 13, 2011

Tuesday, December 13, 2011 -- Mattie died 118 weeks ago today.

Tonight's picture was taken in June of 2008, at Mattie's end of the year kindergarten party. Next to Mattie were his two close buddies, Charlotte and Campbell. This was a special threesome and as Charlotte would tell me often, when it was time for her to go to college, she said that Mattie and Campbell would be coming with her and they would all be roommates. If only that was possible! To me this picture captures a happy time and also illustrates the bond among three people. In so many ways, I think this threesome navigated their way through their first year of full time school together and they relied upon each other. Ironically, like the children bonded together, so did the mothers. Ellen (Charlotte's mom) and Christine (Campbell's mom) became my close friends and our friendship remains despite the fact that our children are no longer physically connected.

Quote of the day: The most called upon prerequisite of a friend is an accessible ear. ~ Maya Angelou

I think Maya Angelou's quote is quite meaningful and very insightful. Yet listening skills are VERY hard to come by and do not always come naturally to people. Throughout my time as an educator, I can safely say I taught hundreds and hundreds of students, and one thing that was always VERY challenging to teach was the art of listening to another person. Active listening requires great discipline, skills, a quick mind, and an ability to think scientifically and creatively. After all, as you take information in, you need to be able to categorize it, make sense out of it, ask questions, and if you are a therapist, you also need to be able to process this information and at the same time use this information to develop a rapport and connection with your client. Listening to another person requires energy, commitment, and a true respect for the person talking before you.

On many levels today, I experienced friendship. Though we hadn't planned to get together today, I had the opportunity to have lunch with my friend Tina. Tina and I became friends after Mattie died. In fact, she may be my first friend I have established after his death, since many of my current friends are connected with me in some way through Mattie. Tina and I are not connected to each other by children, which in a way is a blessing. It is a blessing because this is not what bonds us. What connects us is mutual interests, similar tastes and styles, and we enjoy the art of distraction and fun. Some how after interacting with Tina, I always feel appreciated as a person and that goes a long way in my book. Since dealing with Mattie's death makes me feel insecure at certain times, it helps to have a friend to verbalize the things I sometimes need to hear.

Today marks the 118 week of Mattie's death. It seems rather symbolic in a way that on this day, I would return to the Hospital. This evening, myself and several other parent advisory board members at the Hospital contributed food to a potluck. We brought this food to the pediatric units so that the inpatient families could have a nice dinner. The food was SO appreciated and I had the wonderful opportunity to talk with several parents whose children have been hospitalized long term. In the midst of my visit I also had the wonderful opportunity to see Tricia (one of Mattie's outstanding HEM/ONC nurses and was one of the nurses who helped us on the morning Mattie died), Sarah Marshall (our Angel of Mercy, who helped us for FIVE intense hours as Mattie was dying) and Debbi (our Sedation Nurse Angel, who helped us through every procedure and scan and also helped Tricia with Mattie's body the morning of his death). Somehow it is almost eerie that I would see these three particular women tonight, women who hold a very high place in my mind and heart. 

Debbi and I had the opportunity to chat tonight and as always Debbi helped normalize so many of the feelings I have. Debbi lived through our nightmare with us and therefore, I do not have to explain much for her to get up to speed with how I am feeling immediately. I appreciate her accessible ear, an ear that I relied on many days and nights while in the hospital. Debbi let me know that "not a day goes by" when she doesn't think about me, Peter, and Mattie. Naturally with the beautiful full moon we had recently, there were many friends thinking of my Mattie Moon. As Debbi was speaking to me, what began playing in my head was the song from the Broadway show, Merrily we roll along entitled, Not a day goes by. I attached a link to the song that was sang by one of my Broadway favorites, Bernadette Peters......................... http://www.youtube.com/watch?v=TSb4DJGZqzY&feature=fvwrel

I think the moral of tonight's posting is that a listening ear and a kind word goes a long way. In fact, I would go as far as to say that the kind words you use with your friends and family will not only be remembered but can brighten up even the worst of days.

Monday, December 12, 2011

Monday, December 12, 2011

Tonight's picture was taken in April of 2008. Mattie received a birthday gift from our former neighbors who moved to New York City. When our neighbors moved away this was very difficult for us. We got along very well with them. They appreciated Mattie and Mattie loved them and their cats. Surrounding the birthday gift they sent Mattie, was brown paper. On the paper was all sorts of messages to Mattie. Some of the messages were in English and others were in Farsi. In addition, some of the messages were actual lyrics from songs! Mattie LOVED this paper so much, that he took it and taped it to the back of his bedroom door. Where it remains today! This picture captured Mattie when he was six years old! 


Quote of the day: In the darkest hour the soul is replenished and given strength to continue and endure. ~ H.W. Chosa


My dad sent Peter and I this quote a week ago. When we looked at it we were both taken aback by the word "replenished." I think this caught our attention because we do not view any one thing as really replenishing our soul after the death of Mattie. I would say however, that there are interactions that I have that help me feel alive and connected to the world. I am not sure these interactions replenish the soul, but they are definitely needed to give me strength to continue and endure.

For Peter and I, Christmas can actually be a very dark holiday. Filled with missed opportunities, loneliness, and the intensity of loss. But these feelings are not just inside of us, they are also all around us. We no longer decorate, exchange Christmas gifts with friends and family, or fill out Christmas cards. Our holiday cards in the past ALWAYS featured Mattie on the front cover, and without Mattie, they do not seem worth writing and mailing. Instead we prefer to just send out a written holiday message to our Mattie Miracle supporters.

Since 2008, my source of safety in many ways became our Team Mattie Coordinator, Ann. There is a great deal of emotion wrapped up in this friendship. Today, just like I have done for the past two years, I spent the day at Ann's house helping her wrap gifts for Christmas. It is ironic, in 2009, my first year helping with the production, I most likely was going through the motions and was too stunned from Mattie's death to process anything. Last year, I must admit I again felt numb to wrappings, bows, and gifts. Today however was a bit different. Certainly I could have sat there and assessed how different our worlds are from one another, and at times I guess a part of me did. But that really wasn't what I was focusing upon. What I deduced was by me helping Ann, in a way I was helping myself. It was helping me be a part of the Christmas process. Because someone is going to feel happy seeing and opening up our wrappings and bows. I have always loved giving gifts more than receiving them, and in some way, it is hard not to be involved in the Christmas card and gift exchanges any more. In many ways, it just seems like a very visible reminder that Peter and I are different. Ann received Christmas cards in the mail today, and I got to see some of them. Again, this is something Peter and I rarely receive now. Which is a night and day difference from when Mattie was alive. When Mattie was in our lives, we would received about 150 or more Christmas cards a year. It was almost too hard to keep up. This is a very tangible difference in our holidays, because the death of Mattie hasn't only impacted us it has impacted others as well and how they connect with us.

Sunday, December 11, 2011

Sunday, December 11, 2011


Tonight's picture was taken in May of 2008 in Mattie's kindergarten class. I came into Mattie's class three times that year to do various projects. The first project was decorating homemade gingerbread cookies, the second project was telling the children a story about my transatlantic journey as a child and introducing them to aspects of Italy and the Italian shipping lines, and the third project was a coconut project. Peter and I both came into class that day. Peter's parents each spring would mail us a coconut (literally with the husk on it, like you would find on the ground at the base of a coconut tree) from Florida. The coconut did not come in a box. Instead, Peter's parents would use a marker and write Mattie's address right on the coconut husk and attach stamps to the husk. We brought the coconut to class that way so the children could see it. Peter snapped a picture of me talking to the children about the wonders of coconuts. I showed them pictures of the different trees, talked with them about the medicinal properties of coconut water, and also discussed the various different things you could build from the husk. Peter then took over and took the kids outside and with an electric saw, hand saw, and hammer, showed the children how DIFFICULT it was to open a fresh coconut. They were fascinated and mesmerized. Peter did this show at Mattie's preschool, so this was his second go around at this production. After the show, the children got to eat homemade coconut bread that I made. I have a feeling the coconut project may be an experience that several of the children may remember even today. However, in typical Mattie fashion, when I visited the classroom, he came to sit right by my side as you can see here.

Quote of the day: Every action in our lives touches on some chord that will vibrate in eternity. ~ Edwin Hubble Chapin

This morning as I was sitting in our kitchen, I could hear the birds outside our window. This fall, we placed a bird feeder right outside our kitchen window, so I could see the birds while working in there. My laptop is on the kitchen table and for me this little area is where I do all my work. Seeing and hearing the birds are important to me. As you can see the sparrows have found our new feeder and visit me daily!



I started the day with an ocular migraine, which is NEVER a good way to start the day. I can count on one hand how many ocular migraines I have had in my lifetime. However, each time I get one, the feeling is unnerving. It is unsettling because I lose partial vision in usually my right eye. It is as if I am seeing lightning rods going through my eye. In the past, I freaked out about this. But today I just sat down and closed my eyes until the lightning passed and went away. However, as is typical the lightning is ALWAYS followed by an intense headache. Today's headache did not disappoint.

Later this afternoon, Peter and I met Ann and her daughters and attended a concert called The Living Christmas Tree. I actually attended this production in 2009 with Ann's children. Naturally in December of 2009, only 3 months after Mattie's death I did not know if I was coming or going. Now two years later, I am more stable, and yet feel much more than I did in 2009. Each year, somewhere in this production they sing a song about loss, recognizing that for some of us Christmas is challenging because it makes us reflect on who we have lost in our lives. A loss that changes the whole significance and meaning of the holiday. Tonight's song that captured my attention was entitled "Christmas in Heaven." It talks about how we are earth wonder what Christmas must be like in heaven for our loved ones. It is a frightening thought at times to accept the reality of my loss, and even more daunting to wonder where Mattie is now. My concept of heaven has been altered after Mattie's battle and sometimes I wonder if heaven even exists, or is this something we have come to accept in the Christian faith, because the notion of the alternative is too grave? I never questioned my faith before Mattie's cancer, but now almost anything is up for grabs. Christmas for me is well reflected in this song as well as the song they sang in 2009, Christmas makes me cry. I attached both of them to tonight's posting.

Christmas in Heaven

http://www.youtube.com/watch?v=YVE7H2QUD-U

On our way home from the concert, we were struck by a glorious Mattie Moon over the Lincoln Memorial! It is hard to accept that Mattie wasn't with us tonight. I sat between Ann and Abbie (her youngest daughter). It was wonderful to watch the concert through Abbie's eyes. Everything seemed to glitter, to be exciting, and some of her commentary throughout the performance was a riot. Yet this energy is no longer something that surrounds me and this brings about great sadness for me.

I would like to end tonight's posting with what I wrote back on the blog in 2009. Sometimes I find it important to reflect upon past submissions, to see how I reacted to a similar situation. In this case, I am looking at how I reacted to the Living Christmas Tree in 2009 versus 2011. Though time has past, the feelings remain VERY fresh and VERY similar.

------------------------------------------------------------------------

December 11, 2009

I had another busy social day today, in which I had lunch with Ann, spent time with Ann's mom, and then went with Ann's children to a Christmas play entitled, The Living Christmas Tree. I had never seen this production before, and for those of you not familiar with it, it is sponsored by a local church in Alexandria, VA. The scenery for the play is VERY creative, because on the stage is a huge Christmas tree that is formed by a choir on risers. In addition to the choir shaped tree, there is a light show going on while the choir is singing. I am not doing the play justice, but it is very clever, very creative, and very moving. In addition to the music, there is also a story line acted out by 8 or more people. The story had a good moral message about the importance of opening your heart to your family, sharing what you have with others, and thinking beyond yourself at this time of year. The play was standing room only and the church was filled with families. There was one particular song that got to me. It did for various reasons, first I had never heard it before, but second and more importantly because the opening line of the song is "I think of loved ones who have passed away, and I pray they are resting in a better place!" I almost felt as if this song was sung just for me, as if Mattie was communicating to me directly tonight. I attached a link to the song, in case you would like to hear it. But I do agree, Christmas can make people cry, and I understand this more this year than ever before.

Sometimes Christmas Makes Me Cry
http://www.youtube.com/watch?v=-mLIHOqA2G8&feature=related


It was interesting while this very serious song was being performed, Ann's son, Michael, and Tanja's daughter, Katharina were sitting next to me. Neither one of them made a peep through this song or even flinched. I couldn't help but feel as if on some level this song made an impression on them, especially as they were sitting next to me. Since I perceive these children as both very sensitive and intuitive, their attention to this song, made me take notice.

Once the performance was over, my friend Christine (who came with us, but sat in a different part of the church with her daughter, Livi, and Abigail, Ann's youngest daughter) and I chatted about the production. I mentioned the song, "Sometimes Christmas Makes Me Cry." Christine immediately responded and said as soon as she heard this song, she thought about Mattie and I. In fact, she told me she felt Mattie's presence at the church tonight. Interesting that Christine and I felt the exact same way about this! Christine told me she is in awe of my strength because she doesn't know how I manage day to day, much less have the courage to attend a Christmas play, surrounded by children. Christine's comments made an impression on me, and I was grateful she said them, because many times I do not give myself credit for the things I manage to accomplish in a day, and I assure you, some days it takes great faith, strength, and courage to just get out of bed.

After the performance was over, we all walked to Christine's car. I walked with Abigail, Michael, and Katharina. Abigail was having a ball watching how cold I was (because it was frigid out), while she perceived herself as feeling toasty warm. We had a good time arguing back and forth about the weather, and while doing this, Katharina and I were in total agreement. It was just plain freezing. Katharina and I walked through the parking lot with arms around each other, in hopes of keeping each other warm. Walking with Katharina made me realize how much I miss the closeness and love you can only get from a child. For that moment, it seemed magical as we connected on an emotional level that went beyond the physical temperature in the air.

After the play, though I was not expecting this, Ann invited me to her community's holiday party. This was therefore my second party I attended, back to back, and as I enter these social situations, I am now extremely cautious. However, I noticed that I knew several women at this party, which is ironic. I don't live in Ann's neighborhood, yet through Ann, I have these connections as well. I guess I learned something about myself tonight and that is, despite being grief stricken, I am still the same social creature I was before my life was completely altered. I had a nice time talking and laughing with Ann's friends, and two of them want me to make centerpieces for their table. I told Ann I would actually be willing to do this as a fundraising opportunity for Mattie's Foundation. I was very happy to hear how much these women liked what I did for Ann's table, and though I wouldn't have even entertained making more candied trees, I keep thinking about what my friend Karen said to me. Which was to use my creativity in some positive way, and I can't think of a more positive way then to raise money for the Mattie Miracle Cancer Foundation!

After the party, I went back to Ann's house and we talked for several hours. Clearly Ann and I spend a great deal of time together and in this process the strength and power of our relationship grows exponentially. The past two days, have forced me socially out of my comfort zone, and yet despite my fears, I managed and connected with others. Of course, I always know that if I need to step out of these social moments, Ann will not only understand but support me through the process.
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