Tuesday, November 29, 2011

Tuesday, November 29, 2011 -- Mattie died 116 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie was visiting his close kindergarten buddy Campbell. Campbell and Mattie had a good time together that day and as you can see they were very proud of their Halloween cookies! While Mattie was with Campbell, Christine (my friend and Campbell's mom) gave me some time to myself. These precious moments to regroup were not only needed but were priceless. Christine gave me several times like this, in which she invited Mattie over to play with Campbell and his sister, Livi. She even had Mattie over when he couldn't walk or do much for himself. During those times, Christine carried Mattie around the house, and when she retells her experience doing this we usually both land up in tears. Because by that point in time, Mattie was barely eating. While her children were eating up a storm, Mattie would sit there and watch them, but he really couldn't eat. He couldn't eat because the cancer had taken over his body. Yet being with his friends was important and also playing with children his age was also crucial, since Mattie spent most of his days and hours with Peter and I. There was something very angelic about holding Mattie when he was so sick. He was full of pain, and yet usually never made a peep about it while you were carrying him. He would hold onto to you very tightly, like a monkey wrapping himself around you. I can picture it as I am writing this, and even the thought of these fragile moments bring me to tears.

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


As it is Tuesday, it marks another week we are without Mattie. Each season brings about its own sources of pain regarding this loss, but somehow Christmas magnifies these feelings. Peter and I haven't decorated for Christmas since December of 2007, it seems so long ago, I can't even really remember what our home was like pre-cancer. To me Christmas must be felt within one's heart, and to me, that portion of my heart died in September of 2009. I know Christmas is coming because I can see the calendar and I am surrounded by visual signs of the holiday at malls, people's houses, and the ringing of the Salvation Army bell at most grocery stores. Yet for so many, not just Peter and I, this is not a happy holiday season. Whether it be because of a loss, an illness, or financial hardships.

Fortunately on Tuesdays, which are hard days in general, I attend a zumba class. If I could go to this class everyday, it would probably be good for me. It gets my body and mind working, interacting with people, and it gets me out of my home. Our instructor introduced us to a new routine today! The routine itself was great, but that isn't what caught my attention. What caught my attention was the dance was choreographed to ABBA's Dancing Queen. For my faithful readers, you know that this was Mattie's favorite song to do physical therapy to at the Hospital. I can't hear that song without thinking about Mattie, and when I heard the song, I told Jenny, our teacher, that Mattie would have approved. Keep in mind that Jenny was a mom I met when Mattie was in kindergarten. Her daughter and Mattie were in the same kindergarten class. Here is another person Mattie has connected me with. The connections are overwhelming if you start adding them up.

After class, I met up with Ann. Those of you who have been reading this blog since its inception, know that after Mattie died, I spent most of my days with Ann. In fact, from 2009 to 2010, I practically lived more at her house than my own. As more time lapses since Mattie's death, it becomes harder for me to sometimes integrate into Ann's life because, like how I used to be, she is very invested in raising her children. As such, it can be hard to absorb what an intact family is like, the excitements of children typically developing and growing, and the joys and frustrations that parenthood can bring about. Naturally Ann and I have been through a great deal together and I always want for her happiness. Yet I am only human, and at times I get upset that I too can't share in the life that I once led. That I can't have what she has, a healthy and an alive child. These emotions can be very intense and they can also impact my friendship. Certainly these feelings aren't easy for me, but they also aren't easy to be the recipient of either. However, when I get locked down in my feelings, I make certain assumptions, assumptions which do not always match reality. Whether Ann realizes it today or not, she said enough for me to realize that she is aware of my pain, and yet misses our time together. Our friendship is different from most because we are very tied and linked together by Mattie, his battle, and his death. These are huge emotional ties that bind us, but they can also be huge weights all at the same time. I realize my life is different from Ann's and yet despite these differences she reaches out to me to decorate for Christmas and in other ways. Christmas is so far from being a part of my life, however, finding a way to connect with my friend in a meaningful way is important to me.

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I hope you are both doing well, and that you are finding joy in little unexpected things. I miss you both. Thinking of you this Tuesday and everyday."


The second message is from my friend and colleague. Nancy wrote, "I spent time reading and making notes of those particular items which touched my heart. Your combination of thoughts, feelings, descriptions, and pictures bring a vividness to your writing. I often imagine myself walking down Roosevelt Island's paths with Peter and you. I imagine Mattie feeding the ducks, an occurrence that my Cindy and Dad used to do when my parents lived at their house in Manhasset Hills. She was so in to ducks that one time when we lived in Laurel, Maryland and friends had come for a visit, I decided to make a duck for dinner. It was a favorite of her father's and I wanted to try something different. She never asked what the bird was until later when she overheard us talking. We lived in a first floor apartment, at the time, with access to the playground right outside our door. Anyway, she heard the conversation, began crying and said, "You killed my friend" and ran out the door. It was so authentic! It is a shame that so many never experience this feeling and its depth or they lose it because of life's happenings. Mattie attempted this authenticity each time he pushed ahead during his illness. I was often amazed at how he tried to minimize his pain and experience by giving a smile to the camera. Your descriptions of the times then make it all the more poignant to realize the strength (of course, Mattie would love the color red, as that is what it symbolizes) of this brave little boy. Your recounting of the rules of non profit status with the post office system brought back memories. I remember sitting in our synagogue when I was younger, making sure that we had our bundles properly sorted and tied. We used a meter machine and then it was off to the post office. This may have been a grueling process, however, there is power in your education. Now you are armed for the time when the Foundation will be sending 200 pieces of mail at a time and it will be worthwhile to use this accommodation. For so many, they tend to give up when something requires spending more time and it not working out. It reminds everyone that many a success came on the heels of many failures. We usually focus on the success and forget about all the work involved in getting to that point. That is what makes Peter and you so terrific. You don't give up! You never did when Mattie was alive, healthy or ill and most definitely, you didn't give up after his death. You do go on, no matter what. Even with Peter not feeling well or you having a migraine, work is constantly happening for both of you. Your commitment to Mattie is that sincere and complete. That is why Mattie picked you for his parents. He knew that he would need two very strong and committed people to help him on his journey."

Monday, November 28, 2011

Monday, November 28, 2011

Tonight's picture was taken in November of 2008. Mattie wanted to start decorating his hospital room early for Christmas. In Linda's (Mattie's childlife specialist) usual fashion, she knew exactly what would get Mattie's attention and cheer him up. She gave him strings of colorful lights to put up around his room. At night, we would turn off all the lights in the room, and just have the colored lights aglow. Needless to say, Mattie's room was very popular that season, because despite it being filled with hospital equipment, it looked joyful. Or as joyful as one can make a PICU room. You can also see behind Mattie that there are origami cranes hanging from the ceiling (all 1000 of them) and a set hanging from Mattie's IV pole. These praying origami cranes were painstakingly made by hand by my friend Junko and her mom. You should note that with each fold of the origami paper, a prayer was said. So there were many positive thoughts that went into the creation of these birds! Mattie loved the cranes and they came with us on each hospital admission. In fact the set on his IV pole was actually a conversation piece. As we would roam the hallways of the hospital, people always stopped Mattie to ask him about the cranes. These colorful birds seemed to symbolize Mattie's character and personality. Both sets of cranes remain in Mattie's room at home even today and they hang from his ceiling.


Quote of the day: We have stopped for a moment to encounter each other, to meet, to love, to share. This is a precious moment but it is transient. It is a little parenthesis in eternity. If we share caring, lightheartedness, and love, we will create abundance and joy for each other. And then this moment will be worthwhile. ~Deepak Chopra

We have concluded after much investigation and after completing the first round of the non-profit stamp application, that this form of postage is not cost effective for Mattie Miracle. What an education we have received over the last few weeks. I could say that we wasted our time on the application (which by the way was approved by USPS) process and on running back and forth to the bulk mail center of Arlington, but in the end we learned about non-profit postage and can now say very confidently that it doesn't work for us. In order for this to be cost effective, Mattie Miracle would have to do multiple mass mailings (200 envelopes of more) more than once a year. I had no idea that once we qualified for non-profit postage status, this wouldn't apply to every envelope I wanted to mail out. It only applies to 200 items or more at a time. So the envelopes I mail out weekly, which are time sensitive, wouldn't qualify for the non-profit postage rate, because of their small quantity. So in essence by the time we pay the start up fee and the annual fee for non-profit status, we are really saving no money. We would only be saving money if we had multiple bulk mailings in a given year. So at least we assessed this issue and resolved it.

Later in the day, Peter and I went for a walk on Roosevelt Island. Peter isn't physically feeling well today and in addition, we are both in a Post-Thanksgiving saddened state. Roosevelt Island however, did not disappoint today. Our first sighting was the wonderful Great Blue Heron who seems to love this particular perch. He is usually on it each time we visit the Island.

The Island was quiet and peaceful today with very few people. It is actually the best way to see the Island. As we were walking, I tend to look around and even up, but typically not down. However, fortunately Peter was looking down on the boardwalk, because right in front of us was this lovely Praying Mantis. Now here is a BUG Mattie would have loved to see! This was a first for us on the Island. The praying mantis is named for its prominent front legs, which are bent and held together at an angle that suggests the position of prayer. By any name, these fascinating insects are formidable predators. They have triangular heads poised on a long "neck," or elongated thorax. Mantids can turn their heads 180 degrees to scan their surroundings with two large compound eyes and three other simple eyes located between them.

I came armed today with a sleeve of crackers. When the ducks saw me, they came swimming and flying over. To me there is nothing like feeding the ducks. I used to enjoy this when I was little, and though I am an adult, I still enjoy it just as much. I snapped this picture of these ducks, because I love how three of them were resting with their heads tucked into their bodies.

Toward the end of our walk, we were surprised by this beautiful Pileated Woodpecker. I have been going to the Island for years, but it is only this Fall, that I have seen these wonderful creatures! They are huge birds and I just love the way he uses his beak to hit the wood, it literally sounds like a hammer hitting a tree, rather than the constant peeking one is used to hearing from smaller woodpeckers. If this sighting wasn't enough, we were greeted by four deer at the end of our journey. One was a large buck with antlers. They ran away when they saw us coming, otherwise, I would have been snapping pictures. There is something special about going to Roosevelt Island for us. It is in the middle of the city, and yet it is a retreat that is so needed on many days when grief has simply over taken us.

Sunday, November 27, 2011

Sunday, November 27, 2011

Tonight's picture was taken in November of 2008 in Mattie's PICU room. As you can see Mattie's right leg was all bandaged up, as was his left arm. I did not photograph his IV pole, his pain pumps, or drains. But Mattie looked like an octopus hooked up to all sorts of things. Despite the magnitude of his surgery, the pain he was in, and the fact that he was immobilized, I remain in amazement at that beautiful smile. He smiled, even when there wasn't much to smile about.



Quote of the day: The ultimate measure of a man is not where he stands at moments of comfort and convenience, but where he stands at times of challenges and controversy. ~ Martin Luther King, Jr.


Peter went for his weekend morning walk on Roosevelt Island and when he came home he shared some wonderful pictures with me. Like on Thanksgiving, he saw a pileated woodpecker again, except this one did not flinch at Peter's presence and as the woodpecker was creating a large hole in this tree trunk, wood debris was flying all around Peter.

I think Peter did a wonderful job capturing this regal cardinal sitting in the tree. I have tried snapping pictures of cardinals on the Island before, but usually to my disappointing they fly away in the process. Mattie and I both loved cardinals, perhaps because red is our favorite color, or because they have a very distinctive call. 

This afternoon, Peter and I walked for several hours around Washington, DC. Our first stop was to the see the Martin Luther King, Jr memorial. Though this memorial opened months ago, because of crowds we avoided going. Today was the perfect weather day for walking and touring around. The memorial is very distinctive and symbolic. When you enter the memorial you are greeted by a boulder, which is otherwise known as the Mountain of Despair, broken in half.

At the entry portal, you see the Mountain of Despair which is two stones parted and a single stone wedge is missing. This wedge has been pushed forward toward the horizon. The missing piece of what was once a single boulder now sits to the right of this picture (the wedge is called the stone of hope). The smooth insides of the Mountain of Despair contrasts the rough outer surfaces of the boulder. Beyond this entrance portal, you see the missing part of the boulder which has been pushed forward and on it bears a sign of a great monolithic struggle.

The Mountain of Despair, through which every visitor will enter, signifies the struggle of Dr. King's journey and ends with being released into the open freedom of the plaza. The solitary stone (pictured below, which symbolizes the path he blazed through the Mountain of Despair) is called the Stone of Hope, from which Dr. King’s image emerges, gazing over the Tidal Basin toward the horizon, seeing a future society of justice and equality for which he encouraged all citizens to strive.

On the side of this stone, the theme of hope is presented, with the text from King's famed 1963 speech cut sharply into the stone: "Out of the mountain of despair a stone of hope." On the other side are inscribed these words: "I was a drum major for justice, peace and righteousness,” a statement suggested by Dr. King himself when describing how he would like to be remembered.

The following information comes from the Memorial's webpage......The element of the memorial which truly captures Dr. King’s legacy is the Inscription Wall – this element transforms a mere monument into a living memorial. Fourteen of Dr. King’s most notable quotes are engraved on a 450-foot crescent shaped granite wall. The quotes span the too-short career of Dr. King, the earliest taken from his rise during the Montgomery Bus Boycotts in Alabama, 1955. The latest quote, appropriately, was taken from his last sermon delivered in Washington, DC at the National Cathedral in 1968, four days before his assassination. The quotes are not placed chronologically, allowing any visitor to begin reading from any location within the memorial, not requiring them to follow a defined path. The quotes selected are those which are most representative Dr. King’s universal and timeless messages of Justice, Democracy, Hope and Love. None of the inscriptions are from King’s “I Have a Dream” speech, for several reasons. Primarily, the entire memorial design is derived from King’s most memorable speech; given the limited room for sharing his message and the breadth of his work, the overall design itself is the mark of respect for the moving words from 1963.

After our visit to the MLK memorial, we then continued walking to visit the WW II memorial. The World War II Memorial honors the 16 million who served in the armed forces of the U.S., the more than 400,000 who died, and all who supported the war effort from home. Symbolic of the defining event of the 20th Century, the memorial is a monument to the spirit, sacrifice, and commitment of the American people. The Second World War is the only 20th Century event commemorated on the National Mall’s central axis. This is one of my favorite memorials on the Mall. It is very symbolic of the battle that occurred in both the Atlantic and the Pacific, and the use of water simply attracts both young and old.

I suggested to Peter that we visit a particular location by the Tidal Basin. The location is actually called Independance Island, but frankly I did not know that until today. I have visited this place multiple times with Mattie when he was well and when he had cancer. I wanted to go back there today because it is serene and it attracts all sorts of birds and ducks! This plaque lies on the ground right before the bridge over to the little inlet.

As we traversed the bridge, we came to an opening that acknowledged all the signers of the Declaration of  Independence. Peter is sitting next to the five signers of the Declaration who were from Massachusetts! I thought that was fitting for a Bostonian.

Here is the part of the Island that Mattie LOVED. All the ducks! I remember the last time Peter and I took Mattie to this part of the Tidal Basin, he was quite sick and in a wheelchair. I was exhausted and forgot to bring bread and crackers with me. Another family observed Mattie's disappointment and they came over to Mattie and gave us loaves of bread to feed the ducks. I will never forget that act of kindness! Because it brought a smile to Mattie's face to see the ducks all around him looking to him for food!

While watching the ducks, I sat on a wall which happened to have a large sunflower right next to it. I am a big sunflower fan, and I remember so many members of Team Mattie giving me sunflowers to cheer me up in between our hospital stays. Sunflowers are a happy plant who like me, thrive in the sun.

I would like to end tonight's posting with a message from my friend and colleague, Denise. Denise's daughter is Marisa, and Marisa helped me in the spring and summer of 2009 with caring for Mattie when he was home between hospital stays. In addition, for all my walk attendees, Marisa is the young lady who heads up our bake sale (three years in a row!). Denise wrote, I haven't emailed in a while and wanted you to know that you, Peter and Mattie are never far from our thoughts and our hearts. We went to visit Marisa in Italy in October and we were sitting on the balcony at our hotel. We looked up into the night sky and saw a beautiful full moon and we looked at each other and said, "Mattie Moon." Another time Dave was reading the paper and there was an article about a Lego Park and it included a picture of a huge Lego sculpture. He passed me the article to read and said one word, "Mattie."  When we were in Rome, I knelt in front of the Pieta and said a prayer for all the mothers I know who have lost a son....    In Paris, we saw some sculptures made of Legos; they were in strange shapes and we all looked at them and had the same thought at the same time. The work that you and Peter, with help from your supporters, have accomplished with the Foundation is "awesome". I am so excited for you and we already have Mattie Miracle dates on our calendar for 2012. Sometimes, I do not write or email because words seem inadequate. Please know that you are always in our hearts and in our thoughts and we look forward to supporting you in all the activities for the Foundation."

Saturday, November 26, 2011

Saturday, November 26, 2011

Tonight's picture was taken in November of 2008. Mattie was home and recovering from his second surgery. We had a hospital bed in our living room, and our whole downstairs was transformed. Clearly this picture was taken before we boarded Patches permanently at the vet for over a year (because we couldn't care for her while away at the hospital for weeks on end). Patches was thrilled that we were all home back then and quickly made herself comfortable next to Mattie. That was one very, very difficult recovery time for Mattie. However, as a mother and as a clinician, I knew something was NOT right with him. I diagnosed Mattie with PTSD during that recovery period. It took me quite some time to convince his doctors of this remotely, until they had the opportunity to experience what I was reporting first hand when he came back to the clinic post-recovery. Needless to say, Mattie had a torturous recovery time, and somehow I always associate the Thanksgiving season with Mattie's extreme pain and psychological trauma.


Quote of the day: I try to remind myself that we are never promised anything, and that what control we can exert is not over the events that befall us but how we address ourselves to them. ~ Jeanne DuPrau


My Dad sent me tonight's quote and it resonates with me. I have certainly learned the hard way that nothing is promised to us in life and most definitely we do not control the events that happen to us. At best the only thing we do have control over is how we think, feel, and act as we face and cope with life's circumstances. Peter and I could easily retreat from the world and spend our days bitter, angry, and mad at the world. Honestly at times that seems justified, however, the Foundation is our commitment to rise above these feelings and to make some sort of difference. This is how we "address ourselves" to the aftermath of childhood cancer.

I woke up this morning and was in one of those moods which sent me right back to bed. As the day wore on, I did get up and was motivated to call my mom to wish her a happy birthday. We had a chance to catch up and I got to hear about my parent's Thanksgiving.

Peter and I made plans earlier in the week to visit Becca. Becca is an executive chef at Clyde's. In fact, she used to work at Mattie's favorite restaurant in Alexandria, but has now moved to the Clyde's location in Tyson's Corner. Becca is the chef who donated all the food to our 2011 Foundation Walk, and then not only gave us the food, but grilled it on site that day, and served it to our Walk participants. Becca's food was an absolute hit and we saw an incredible increase in food sales this year. Profits which only further help meet the psychological and social needs of children with cancer. Our goal for visiting Becca today was to let her know that we appreciate her and are thankful for her support of our Foundation's mission. I emailed Becca earlier in the week to let her know that we were coming to visit for lunch today. When we got to the restaurant, she came out of the kitchen to greet us and sat with us for quite some time. I am enjoying the opportunity to get to know Becca as a person not only as a chef. Each time I meet her it becomes further evident to me that this is a woman with not only many skills, but with a deep and compassionate heart. Becca treated us to lunch today at her restaurant, something I wasn't expecting. I wanted her to feel special, and instead what happened is she did that for Peter and I. She said to us that she is thankful for having us in her life. All I can say is WOW! After all, keep in mind that Becca never met Mattie, but she does know about his battle and our affection for Clyde's at the Mark Center (where Mattie loved to eat).

Becca has already placed our Foundation Walk date (Sunday, May 20, 2012) on her calendar and is committed to helping us again this year. As I told her tonight, she is a very special person and I wish the world was filled with more people like her because it would make it a much more beautiful and peaceful place to live. Becca made our day and perhaps our Thanksgiving season, and she further illustrates the extraordinary people who have entered our lives because of Mattie. Needless to say, Peter and I were energized from our connection today.

The ironic part about all of this is I had emailed Karen earlier today about meeting up with Becca. Karen felt quite certain that Becca would want to partner with us again this year. Karen had observed our Walk participants interacting with Becca this year, and she said it was a positive interchange for both parties. Karen got me to step back and see that Becca probably appreciates the opportunity to actually interact with her customers, since she can't always do this when working in the kitchen of her restaurant. I never thought about that but given that Becca is very personable and gregarious, I think our Walk gives her the opportunity to cook for others but also interact with them. Putting that aside, Becca's heart and motivations are truly genuine and when you find a rare gem like this, I immediately want to embrace them and have them on my team!

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "I read the blog this morning and felt great warmth. The love and frustration that Peter and you felt while taking care of Mattie and now yourselves was revealed in a concise, meaningful way. It is this truthfulness that makes the blog a "go - to" piece of many people's day. You are so giving to Mary. She is lucky to have you and in some ways, you, her. She provides a missing link with your grandmother, I suspect. What I mean by this, is that your Grandmother died when you were so young. It was a difficult time for all of you and your Mom got sick herself. Here you can minister to Mary and have some distance. I appreciated your comments about neurological issues and the elderly. It brought back memories of times with Mom, albeit frustrating for me at the time, yet, explained here by you, gives me pause that I did do the best I could to help and care for her. I realize that your sharing about the lights and Peter's continuation of this tradition had to be very emotional. Peter is such a sensitive person and his action speaks volumes of his loss and missing Mattie. Once again I am reminded of the resiliency of human beings. Holidays at home are so challenging in the face of loss and being able to remove oneself from the loss, even for a bit, is the healthiest way to deal with the memories. I'm glad that you had this time with Tamra's daughters and family. Thinking of you today, always and in all ways."

Friday, November 25, 2011

Friday, November 25, 2011

Tonight's picture was taken in November of 2008 in Mattie's bedroom. Based on Mattie's physical stance, I can tell that his first surgery was completed on his right arm, but his other limbs were intact and therefore his second major surgery hadn't occurred yet. In our home, Peter and Mattie developed a tradition. They would both decorate our balcony and front yard space with Christmas lights the day after Thanksgiving. This was a big deal to them, something they planned weeks before Thanksgiving. In fact, each November, Mattie would pick out another Christmas light of his choice to add to the display. In November of 2008, Mattie selected a dog that looked like Scooby Doo! Their light display was always the talk of our complex. Mainly because they not only decorated our space, but a good part of the commons area. There were all sorts of lights and many of them moved and were animated. Their light show made people happy. Neighbors would take photos of the lights, come out and admire them at night, and whenever they saw Peter or Mattie they would thank them for brightening up their holidays. Though Mattie is no longer with us, Peter keeps up the tradition of outdoor lights the day after Thanksgiving. The display is NO longer ornament, dramatic, or bold. But instead a simple display which I imagine (since Peter and I do not talk about this!) is a symbolic gesture of the beautiful bond between a father and a son.

Quote of the day: Give what you have. To someone, it may be better than you dare to think. ~ Henry Wadsworth Longfellow


Today was a day filled with various challenges. We decided to make a mini Thanksgiving meal for ourselves, and instead of a turkey, we baked cornish hens. I prepped all the food in the morning, and as I began cleaning up, I realized my kitchen sink was not happy. In fact, it was backing up and began to look like a fountain with all sorts of things spraying out of it. The beauty of living in our complex is that getting help is easy and quick. We have lived here long enough that we know the management and everyone who works the front desk. These individuals knew Mattie when he was a baby, watched him grow up, and helped us in enormous ways when he was sick and dying. Whenever I have a problem, someone is there to help me within minutes. You almost can't put a price of this kind of professionalism. 

As the sink was backing up, Peter was getting annoyed and upset, and suggested that I threw something down the sink to cause this back up. Needless to say, I did not take that well, and went upstairs and closed the door to our bedroom and worked there the rest of the day. Again, stepping back from this interchange, I know that the frustration was not really with the sink, but the sink was a safer place to put one's sadness. These are the many things you learn when combating grief with a spouse, we sometimes take our feelings out on the other one, many times unknowingly.

Within minutes of our call to the front desk of our complex, John, one of our maintenance men showed up. Peter got to talking with John and asked him how long he worked for our complex. John looked up at Peter and said, that he knew Mattie! That caught Peter off guard, but John replayed a story of his encounter with Mattie. John used to have longer hair, and Mattie told him that he looked just like Manny Ramirez (a former Red Sox left fielder). It was at that point that John and Mattie realized they had something in common, they were both Red Sox fans. Here is another example in which Mattie touched someone's life, just with a simple conversation. Needless to say, John worked HOURS in our home today, and as I suspected the issue wasn't with us. It was with a pipe four floors down.

Later in the day, I went to visit Ann's mother, Mary. Mary was aware of the fact that it is Thanksgiving, and I asked her what she wanted me to bring her today. Her request for the day was turkey. Naturally since I did not cook yesterday I had NO turkey, but I wasn't coming empty handed. I know all too well that when you live in an institution, the little things can really perk you up. So I made it my business to honor that request. This morning I made Mary mashed potatoes and then I stopped by Tina's house and picked up the rest of the goodies. Tina gave me turkey, stuffing, and sweet potatoes for Mary. Between the two of us, we met Mary's request and made her happy. In essence I feel that we operationalized Longfellow's quote today, because we gave what we had and to Mary it made a difference.

Before Mary had her dinner, I brought the Washington Post with me and read her two Thanksgiving Day stories from it. One was about a family from El Salvador who shared their first Thanksgiving as a family all together in the United States, and the second story was about having Thanksgiving in Iraq, and the challenges of tracking down turkey for a traditional meal. Both stories highlighted the importance of the human connection, discussed the symbolism of the turkey at this time of year at our family feasts, and also reflected upon the importance of being thankful. Though Mary's eyes were closed as I was reading, I continued on. After each article, I paused and recapped the article and discussed my feelings about the content. When I was done with both articles and was putting away the papers and preparing her dinner, Mary piped up and said..... "those were very good stories, thank you for reading them to me." The beauty of Mary, and really anyone with a neurological disorder, is that we can not assume things aren't being processed and listened to, what I find is Mary takes everything in, but can't always verbalize responses. Today's delayed response confirmed my feelings, which will further motivate me to bring in articles that I think will be of interest to her.


When I came home tonight, I was greeted by Peter's lights. Here is the first set he put on our deck.

When I entered our home, I could see the lights Peter hung on our balcony. Do take notice that in front of our living room picture window, there are MANY trees. These are all our outdoor trees that are inside now for the winter. I told Peter tonight, after I saw all the lights, that Mattie would have been proud of him for remembering.

Thanksgiving 2011

Thursday, November 24, 2011

Tonight's picture was taken in November of 2008, before Mattie's second limb salvaging surgery. To me this picture captures the essence of the Thanksgiving Day spirit. Despite having cancer, despite the fact that Mattie felt different, isolated, and sick most days, he was thankful to have Peter and I in his life. His smile at me, through the camera, says that and more. Mattie was an extraordinary child, because even though he was living hell on earth, and experienced pain that only the rest of us can imagine, he wasn't a complainer. He never had a woe is me attitude, I am not sure every child or person could have handled his diagnosis with the same courage and strength. Mattie, as his name implies, was a gift. For his presence in our lives, we are very grateful.  


Quote of the day: We can only be said to be alive in those moments when our hearts are conscious of our treasures. ~ Thornton Wilder


I will always vividly recall our last Thanksgiving with Mattie. As is true at most hospitals, we were discharged right before the holiday. Hospitals try very hard to get patients home for the holidays, as long as patients are not in a critical condition. Being home for us was just as, if not more, complex as living in the hospital. At least in the hospital we had back up and support. At home, it was just us playing nurse, doctor, mom and dad, and playmate. It was an impossible task, and on top of that we were physically exhausted. Mattie was released right before Thanksgiving, however, all three limbs of his had been operated on, he was in a great deal of pain, and basically immobilized. Our living room turned into a hospital room, with a commode and hospital bed where our couch used to be. In fact, I dislike spending Thanksgiving in our home, and typically won't even turn on the TV to watch the Macy's Parade. The last parade I watched was with Mattie and he was feeling absolutely miserable. He was SO depressed that day, and Peter and I were jumping and doing somersaults to entertain him, but despite our greatest efforts, we couldn't cheer Mattie up. His sadness was very pervasive and it bore a hole right through me. So I begin each Thanksgiving, with these memories, and reflect on the feelings we felt in 2008.

Patches, our calico cat, was thrilled to have Peter home today. So much so, that she decided to capture his attention by sitting on the newspaper he was reading.


Peter and I were invited to celebrate Thanksgiving with our friend Tamra and her family. Tamra's daughters, Louise and Meredith, attend college and are home on break. Both girls became friends with Mattie during his cancer battle and came to our home several times to give us a break for a few hours while they would engage and play with Mattie. In fact, they created a creative game in which he was named, Matticus Brownus. Mattie loved it and he enjoyed his time with the girls.

Tamra invited us to attend a wonderful Thanksgiving Day lunch at her club. We were honored to be included as part of her family today and to have the opportunity to get out of our home and do something different. Something that did not remind us of Mattie. In fact, I think having a Thanksgiving meal outside of a home environment worked quite well for us. Somehow having holiday celebrations in people's homes just emphasize exactly what we are missing. Which only compounds the feelings of being different and magnifies our feelings of loss. However, being in the club today, made it feel like a special day, and a day we could acknowledge our thanks. We are grateful to have special friends, but it wasn't a setting that set me off or has left me feeling particularly vulnerable tonight.  

At lunch, we had the opportunity to catch up with Meredith and Louise (who are pictured with me). These are both very bright, eloquent, and engaging young women, who also have a great sense of humor. We had a great discussion on all sorts of things, including pies and desserts, one of my favorite topics! 

After our lunch, Peter and I went for a walk on Roosevelt Island. We had six sightings on the Island today.... an eagle, a great blue heron, ducks, a cardinal, a woodpecker, and deer. The beauty of a pileated woodpecker is that you can hear it before you can see it. Here is the amazing picture Peter took of the pileated woodpecker, the largest woodpecker in America, almost crow sized. Adult males (like the one pictured here) have a red line from the bill to the throat. The call sounds like a wild laugh. Its drumming can be very loud, often sounding like someone striking a tree with a hammer.

In honor of Mattie, I took a picture of his ducks!

I haven't seen deer in quite some time on the Island. As we were in the last stretch of the trail, we spotted three deer and one baby. They were an incredible Thanksgiving sight.

We saw this adorable baby deer, and I couldn't help but see this cutie and think of Mattie. Mattie would have absolutely loved this sight, and most likely would have said..... "there is a deer family, with a mommy, daddy, and the baby. Just like us!"

Despite not being a phone person, I had the opportunity to connect with my parents today and my lifetime friend, Karen. In a way, I was happy to have these connections, because it is vital to feel like I am a part of a family, even though the most important member is no longer with us.

Wednesday, November 23, 2011

Wednesday, November 23, 2011

Tonight's picture was taken on November 21 of 2008. Mattie was in the hospital recovering from his second major limb salvaging surgery. As you can see he was unable to use both of his arms. One was recovering from surgery in October, and Mattie's left arm was just operated on along with his right leg a week before this picture was taken. However, what I love about this picture was it showed Mattie's determination and spirit. Even with three limbs wrapped up and being in pain, that did not stop him from doing activities. He wanted to play a game on the computer, and used "George" to help him. George was the name Mattie's surgeon (Dr. Bob) gave to his left leg. It was a good name because in essence that leg was like Curious George, the storybook character. Mattie became so good at manipulating that leg, that it performed almost like an arm and hand. In fact, Mattie was home for Thanksgiving of 2008, however, it is a day Peter and I will never forget. Mattie was so depressed, in a great deal of pain, and we felt absolutely helpless over the whole situation. These memories are very vivid for me which is most likely why Thanksgiving is not a very happy occasion for us.


Quote of the day: Let us remember that, as much has been given us, much will be expected from us, and that true homage comes from the heart as well as from the lips, and shows itself in deeds. ~Theodore Roosevelt


As Thanksgiving is approaching, I decided to post a quote about this special occasion from Theodore Roosevelt. What I like about this quote is that for me it is a motto that I try to live my life by. Lip service is nice but it is shallow. The true test of courage, friendship, and character are in one's deeds. This shouldn't be applicable only during Thanksgiving, but a philosophy that grounds each day of our lives.

I spent a majority of the day at home. I have been reading several psychological journal articles about the impact and long-term effects of cancer on children and their families. I actually found it interesting, but not surprising to learn that children who have INTENSE cancer treatments are at greater risks for challenges and issues. I saw this psychological devastation in Mattie, but it is nice to know that the research confirms our experience and my feelings.

Later in the day, I went to visit my friend Tina. Tina is in the midst of getting her house ready for Thanksgiving and I got to see her plans for tomorrow. We both appreciate food, flowers, and decorating, so it was fun to see her work in progress. As I left, Tina and her daughters surprised me with cookies, pumpkin ice cream, and mini pecan pie tarts. They wanted to make sure I had sweets on Thanksgiving. Very, very sweet and touching.

I went to visit Ann's mom tonight and helped her with dinner. Mary was happy to see me, and we chatted for a bit. As I put on my coat to leave, Mary asked me how she can ever thank me. She knows that when her daughter goes out of town, I step up to the process to make sure she isn't alone and is taken care of. I told her that this is what good friends do, and that thank you's were not necessary.

On the eve of this Thanksgiving, Peter and I want to wish all of our readers and supporters a very Happy Thanksgiving. We are thankful for you!

Tuesday, November 22, 2011

Tuesday, November 22, 2011 -- Mattie died 115 weeks ago today.

Tonight's picture was taken in November of 2008 in the Lombardi Clinic at Georgetown. As you can see, Mattie was in a devilish mood that day and was trying to scare me with talk of cockroaches and even pictures. I am not sure what Mattie loved more... bugs or the thought of freaking me out with bug talk. Either case, we all played into his bug interests because it kept him smiling, laughing, engaged, and active. In fact, over the course of his treatment, lots of Mattie's friends would give him plastic bugs and fake roaches. However, Mattie would use these items to scare all of us, me, his nurses, or any unsuspecting soul. Though I despise roaches and really all bugs, I can't help but remember these bug moments in the hospital fondly. I use the word fondly because these bugs provided an outlet for Mattie to connect with people, which as his treatment went on, this was much more complicated for him to do. He turned inward and preferred isolation. Mattie's cancer left him depressed, anxious, and contending with PTSD. So whatever activity brought about laughter and his willingness to talk, I always supported.

Quote of the day: We don't receive wisdom; we must discover it for ourselves after a journey that no one can take for us or spare us. ~ Marcel Proust


Tonight's quote is very poignant and SO true. Mattie's cancer journey is something that will always be a part of me and as such it imparted me with a deeper understanding for things I may have taken for granted before. My knowledge is really not something I could have easily captured from someone else's story. I have a lived experience which I feel compelled to share with you each day in hopes that I can spare you from ever having such a journey.

As it is a Tuesday, this marks another week Mattie is gone from our lives. I do not think it is happenstance that I choose to attend zumba class on Tuesdays. The class gets me up, out of our home, and moving around. It also enables me to see the same women each week and my friend, Heidi. So it is a good thing for me.

After class, I came home and I literally spent about five straight hours in front of the computer. I had some research to do for a Foundation activity we are planning in March. I will be sharing this new venture with my readers shortly.

I think I was able to remain focused on this work and be home all day because I knew I was going out to dinner. Heidi and I decided to get together, which worked out well since Peter had a business dinner tonight. When I signed up for zumba class, I thought I would just be getting exercise, I hadn't planned on making a friend in the process. That is always a special gift when that happens. Heidi and I chatted about all sorts of things and time simply flew by. However, unlike making a new friend, Heidi knows a great deal about me already from being an avid blog reader. At the end of dinner Heidi surprised me with some tasty things to take home, one of which were a candy cane type of oreo cookie. Since oreos maybe my all time favorite cookie, I look forward to trying this cookie dressed up for the season.

When I got home from dinner, Peter was energized and wanted to talk. He had three encounters today where people wanted to hear about how he was doing and wanted to hear his Mattie story. Certainly Peter can share his thoughts and feelings with me, but talking to someone who isn't as emotionally invested in the topic can be very healing. As he was talking, I could sense that in a way it was a cathartic experience for him and I was so happy he was sharing it with me. As I say to Peter often, it is hard for us to help each other at times because we are both grieving the same loss.

Tonight Peter had the revelation that when he shares his upsets and feelings with me, that sometimes he is surprised by my reaction. However, he said what he realized is that my reaction is not necessarily my response to his questions or feelings, but simply my own raw emotions and feelings to the situation. This is a fine distinction, but an important one nonetheless. Because my volatility or Peter's volatility come from within over the loss of Mattie, it isn't simply a by-product per se of the content we are sharing with each other. Knowing this is important for any relationship because it helps to put in context reactions we may not understand from each other.

On Peter's taxi ride home tonight from dinner, a miraculous thing happened. The taxi driver started talking to Peter about the holidays. When Peter said to him that the holidays are difficult for us, the taxi driver wanted to know why. But it wasn't a perfunctory question, he seemed genuinely interested in learning more. Peter told him about Mattie, about the cancer, and about the Foundation. Peter said the conversation was surreal and very existential, not something he was expecting on his car trip home. I think it is ironic, that support comes sometimes in the most unexpected places. But between dinner, a phone call from a colleague, and then the taxi drive home, I could see that Peter felt different. He felt heard, understood, and he illustrated to me that telling one's grief story is vital to coping and adjusting.

I would like to end tonight's blog with a message from my friend and colleague. Nancy wrote, "The quote from yesterday, "How can I be useful, of what service can I be? There is something inside me, what can it be? is calling to me. Coming from this much loved master, who didn't achieve much success in his life is so interesting. The existential value of this quote is haunting. As a clinician, it is pivotal. In my opinion, a "good" practitioner works towards this goal with some clients, a master attempts it with all. As a parent, it is important because you demonstrate each day how crucial it is to be able to understand and listen to our children. I don't understand how many miss the value of being in the moment with their children. Is this something that our society has lost? Has the push of monetary gain blurred the essence of parenting or is it that we are not equipping many with the essentials of good parenting? Over the last few days, there has been a blurb about one or more parents who have mistreated their children and in most cases taken their lives. This is so hard to read knowing that you both had no control in Mattie's disease and now have to live without him and only through fantasy, can you imagine what he would have been doing and how he would have grown up? I am spending this quiet time today reflecting on the many gifts I have received from our correspondence and friendship. Some of them remind me of my Dad, who was my first mentor. I pray that he continues to watch over me as I know Mattie is watching over you."

Monday, November 21, 2011

Monday, November 21, 2011

Tonight's picture was taken in August of 2008, in Mattie's PICU room. As you can see the creative process was something we turned to throughout the days and nights to pass the time and to try to forget the pain and our reality. Fortunately Mattie had an artistic side to him, because I frankly do not know how we would have made it without this outlet. Mattie was prolific while at the hospital, using all sorts of media (paint, clay, cardboard boxes, markers, model magic, Legos, beading, and the list goes on!). Linda (Mattie's childlife specialist) learned early on in the treatment process that Mattie liked building things, and she would stock him up with all sorts of model kits, which after building each object, he would then paint. I have many of these models at home with us today.

Quote of the day: How can I be useful, of what service can I be? There is something inside me, what can it be? ~ Vincent Van Gogh

Somehow after yesterday, my mood did not improve. I think the rain and greyness of the day did not help me either. Peter was a good buddy throughout the day, and has learned that when I get into these moods, you have to just roll with it and respect it. Trying to change it or my perception of how I am feeling will only be counterproductive. Peter also knows that the way to my heart is through food. Before Mattie was born, I used to love going out to eat, experiencing different foods, and soaking up the atmosphere of a restaurant. When Mattie came along, like most parents, the act of eating became more of a necessity than an art and luxury. Mattie was an active fellow and in the beginning eating did not interest him in the least. So with that we stopped going out to eat, almost altogether. However, now that Mattie is gone, getting out of our home is important. So today, Peter took me out to lunch at a local restaurant of ours that just opened. I wanted to try this restaurant for a while, so I was motivated to walk there even in the rain.

Good food can make me feel better and as the lunch continued, we were so pleasantly surprised with the quality of the food and service that we both enjoyed getting out. I had a picture window right next to me and I landed up staring out of it to people watch, which is always entertaining to me. I honestly do not remember what I said at lunch, but while Peter was drinking coffee, I got him laughing so hard (without trying), that coffee was coming out of his nose.

Based on a meeting I had today after lunch, it is clear to me that those who do not know me well, are not as tuned into the fact that I have many sides (like all of us!). Yes I might be depressed and saddened at times, but despite those intense emotions, I am very able to advocate for the Foundation and children with cancer. When someone makes the assumption that I am unidimensional, that is when I can get upset. Naturally it is human nature to make assumptions about others, but you can't make untrue assumptions about me as it pertains to my son or the work I do in his memory. Such assumptions will cause me to assert myself and push back at you.

I have greatly appreciated several of my friends who wrote to me today. Who wanted to know why I was upset and how I was doing today. All this support is always appreciated. You have given me the third gift that was talked about in last night's quote.... understanding.

I would like to end tonight's posting with a message I received today from my friend, Junko. Junko wrote, "Your comment that empathy is something we are born with, rather than something that can be taught, I just heard the similar subject over the radio. I agree with your insight, and the radio article (in a more nuanced way) appears to support our thinking. Here is the radio clip for your information.

Strangers Can Spot Genetic Disposition For Empathy http://www.npr.org/2011/11/18/142512092/strangers-can-spot-genetic-disposition-for-empathy?sc=emaf

On a separate topic, I wanted to tell you that I was in the hospital room with you when Nicholas came to Mattie's room to visit in a Scooby Doo costume back in August 2008. It was my first time to visit you guys after diagnosis, and I still remember how Mattie, despite his difficult circumstances, tried to ensure that you gave me the parking validation sticker before I said good-bye. I cried all the way back in my car thinking and questioning why this had to happen to Mattie and to you and Pete, and I still think and ask the same question even now."

Sunday, November 20, 2011

Sunday, November 20, 2011

Tonight's picture was taken in August of 2008, in the Lombardi Cancer Center at Georgetown Hospital.  Jenny and Jessie (Mattie's art therapists) knew Mattie loved Scooby Doo, and therefore they traced a Scooby scene on a ceiling tile and told us we could paint in the details. Mattie was thrilled because how often can you paint on the ceiling? In fact, Mattie was one of the first artists in clinic to get a ceiling tile, and this tile still exists in the clinic today. Last week when we went to Georgetown for its annual remembrance service Peter went into the clinic to snap a picture of the tile. I remember painting this tile with Mattie as if it were yesterday. All the art projects kept us focused, busy, and working together. Though Jenny and Jessie are no longer at Georgetown, their presence remains with me always. They are gifted, talented, and compassionate women who made a huge difference in our lives.

Quote of the day: Life is the first gift, love is the second, and understanding is the third. ~ Marge Piercy


My friend Charlie sent me this quote a couple of days ago. However, when I received it I wasn't ready to post it. Typically I post a quote each night that either speaks to me, or is capturing my feelings and thoughts for the day. Piercy's quote does just that for me on this grey Sunday. Life maybe the first gift we receive from our parents, and if you are lucky enough somewhere along our life's journey, you may find the second gift....love. Love from a partner and/or a friend. However, the third gift is in my opinion MUCH, MUCH harder to not only receive but also to give. Understanding another person's feelings and thoughts takes a great deal of energy, time, patience, and ability to step out of one's self and enter the world of the person in front of you. It is a hard concept to teach, which is why in my opinion educating therapists is extremely challenging. Because in many ways, understanding and empathy are either skills and abilities that you are born with or not.

I will try to explain my latest frustration and it is my hope that those who are reading my words can put my thoughts and feelings into context without taking it personally. There are times when I socialize with others and I feel absolutely like I am living on another planet. Today was one of those days. My internal struggle is trying to live in a world in which the majority of people do not know what it is truly like to have lost a child to cancer. Instead, most parents are raising physically healthy children and their upsets revolve around developmental issues and challenges. I am clearly not belittling this, because when I was once a part of the healthy world, I too worried, focused, and needed to process these everyday concerns. I get that and embrace that, and try to absorb the content that others talk to me about. However, I am a person who feels deeply and sometimes I literally want to scream over what I am hearing about. I think we live in a very competitive part of the country, where children do not have a minute to themselves and are placed in circumstances that most adults wouldn't want to be faced with on a regular basis. We do this in hopes of what?? So our children will get into good colleges, be a competitive part of the job market, etc.... Again, I get all of that really, but I guess I have seen a side of life most people haven't. I have seen that childhood can be taken away in an instant and I also hear stories on a regular basis of the traumas children are living with each day as they are fighting for their lives either in hospitals or in their communities. These children are asking themselves whether their lives are worth living, whether they have a purpose in life, and whether they will ever be normal again. How can I possibly hear and see these tragic things and not get upset, frustrated, and feel isolated when I hear others' everyday concerns? I wish I could impress upon parents how lucky they are to have these everyday concerns, how lucky they are that they can talk to other parents about their feelings and thoughts and be UNDERSTOOD!!!! Because the alternative of these everyday concerns, is what Peter and I live with each and every day.

It may seem as if I am angry and do not channel my feelings in a positive way. However, again, I can assure you that I wouldn't agree with this statement. Walk a day in my shoes, and I would imagine this would be an eye opener for many. I so wish parents would see the benefits of nurturing other qualities in their children, rather than introducing them to one competitive event after another, being over programmed, and in the process disconnected from the more meaningful things in life. The things that really matter. I realize I can keep writing and standing on my soap box about this, but I am also quite aware of the fact that such mindset changes require introspection and also exposure to a life changing experience.

One thing is quite clear though, socializing for Peter and I is difficult. Which is why we continue to limit our exposure to this, because in the end it only makes us feel more disconnected from others and the world around us. For us life will never be normal, we know too much, and have seen way too much. What may be the norm for most families, is no longer the norm for us. Our challenges are very different and therefore so are our views of the world. Perhaps what I am writing isn't easy or understandable to read, but I do appreciate you visiting the blog and absorbing my thoughts for the day.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "I was so overwhelmed by the emotion and comments shared by and with you over these last few days. We all know that this is beyond your personal investment, it is propelled by a little Angel named Mattie. You are the parents that many aspire to and few reach in a lifetime. I couldn't listen to the links yet because the intensity of what Vicki and you spoke about at Thursday night's dinner was so intense. I will go back to listen and reread the passages I didn't get to yet. I thought Dr. Bob's project was brilliant and obviously the groups were very dedicated to their class and mission. Bravo on your walk around DC and reconnecting with your Clyde's friends. I remember our dinner in Alexandria fondly. With love and a hug to both of you."