Saturday, June 18, 2011

Saturday, June 18, 2011

Tonight's picture was taken in July of 2006. Mattie was four years old and full of life. As you can see he was jumping on our couch! This was one of his favorite things to do, jumping on my bed like a trampoline. I remember doing all this jumping around when I was a kid, so I never stopped him. I just supervised him so he wouldn't jump off and hurt himself. In the grand scheme of things this statement is just too ironic! I tried to think about all the ways Mattie could potentially hurt himself and I always was proactive to protect him. Of course, I never factored into the equation cancer. A threat that was out of my hands and my control.


Quote of the day: As life becomes harder and more threatening, it also becomes richer, because the fewer expectations we have, the more the good things of life become unexpected gifts that we accept with gratitude. ~ Etty Hillesum

My dad sent me tonight's quote and I have been thinking about it for hours. The word within this quote that is SO poignant is EXPECTATIONS. About a week or so ago, my dad sent me a quote about PROMISES. Some of you may recall the promises quote on the blog. In reality there are moral messages in these two quotes and also these quotes speak to my character. PROMISES and EXPECTATIONS are very meaningful to me. As I said a week or so ago, I take promises seriously. I only make promises I can keep and when someone makes me a promise, I remember that. However, expectations are a bit more complicated. I have always had and operated with high expectations for myself and in turn for others within my life. I have many friends, but I only let a small handful of people get close to me. The closer you are to me, the higher the expectations I have for you. Sometimes my expectations aren't fair or even doable, and now with Mattie's death, my feelings for others and at times my expectations are not even realistic. I am aware of this on a cognitive level, but on an emotional level when an expectation isn't met by someone close to me, I feel as if it is the end of the world, or in essence the end of a friendship. Having lost Mattie has impacted my friendships and my ability to connect with others. It is easy now for me to feel abandoned or unimportant, even when this isn't the intentioned message from others. In a nutshell, the death of Mattie has rocked my world, my perspective, and at times my ability to rationalize without external validation. To me tonight's quote was very timely, because I do think one can be happier with fewer expectations. It is the unexpected acts of kindness and friendship which are indeed life's true gifts.

Despite it being in the 90s today and very humid, Peter and I went on a three mile walk around the Washington Mall. We stopped at the World War II Memorial and took in the sights and the meaning of this monument.

As we walked passed one of the tidal pools on the Mall, something in the middle of the pool caught my attention. It was a Great Blue Heron! I have never seen a heron just sitting on the Mall before, so this was a first. This particular portion of the tidal pool holds memories for Peter and I. Because we took Mattie to this spot when he had cancer. It is a great viewing spot to see all sorts of birds and in fact one afternoon, another family was there feeding the birds, and they came over and shared their bread with Mattie (who was sitting in his wheelchair all bundled up) so he too could feed the ducks! I will never forget that act of kindness because with Mattie's cancer thinking about carrying bread and feeding the ducks hadn't even crossed my mind. But I am so happy they shared their bread with us because feeding ducks was always something Mattie loved to do.

Friday, June 17, 2011

Friday, June 17, 2011

Tonight's picture was taken in August of 2006. As you can see it features one of Mattie's Lego structures that he built which extended through our living room. Legos were always a part of our lives once Mattie was born. He naturally gravitated to them and loved to build, create, and design. All of Mattie's Legos were donated, however several of his special pieces we kept. In total, we must have had close to 100,000 Lego bricks in our home! My joke with Mattie was that one day he was going to build me a couch made out of Legos! He always thought that was funny.

Quote of the day: Words are like nets - we hope they'll cover what we mean, but we know they can't possibly hold that much joy, or grief, or wonder. ~ Jodi Picoult

I wasn't sure how I was going to spend the beginning part of the day. I was working on Foundation items but needed a diversion. It is in such moments like this when my friend Tina sends me a text message. Purely by happenstance mind you. In any case, Tina invited me to her home to see her remodeling in progress. I enjoy watching and being involved in any sort of creative process now, so it was fun to see the first stage of her home's transformation. Tina happens to have a labradoodle, and this dog and I seem to be simpatico with each other. Any case, the irony of the matter is Max and I played a chasing game today around Tina's couch that reminded me of a game Mattie and I used to play together with Zachary. Of course Mattie and Zachary were pretending to be trains and they were chasing me, and Max was chasing me for the sheer joy of the activity. Nonetheless, running in circles reminded me of Mattie's preschool days! It is funny how an activity can take you back in time.

As the afternoon continued, I visited and cared for Ann's garden and then went to visit her mom, Mary for several hours. As soon as Mary saw me she noticed the glass sea turtle necklace I bought at Rehoboth beach recently. She liked how is sparkled and commented on it immediately. Tina noticed it too, so I have to think I chose wisely and when someone notices it is reminds me of Mattie. Mattie grew to love sea turtles especially after his preschool adopted him one named Roxana. Roxana was given to Mattie shortly after he was diagnosed with cancer. Mattie loved tracking Roxana on the computer and getting updates on her in the mail!

This weekend is another special weekend for so many people, since it is Father's day. Yet another hard weekend for us. This Father's day, many Mattie supporters are getting together at National's Stadium to watch a baseball game. Thanks to a generous donation we received, we were able to give anyone who made a contribution to the Foundation on the day of the walk (May 22, 2011), National's tickets for a father's day game. There will even be a special message to Foundation supporters on the score board on June 19, 2011. Naturally Peter and I are grateful to our contributors and to the family who donated the 99 baseball tickets to us. However, this is not a game we can attend for various emotional reasons. Actually it is hard to know how to handle Father's Day or Mother's Day and I have concluded Hallmark doesn't even come close in making the appropriate card for people like Peter and I.   

Thursday, June 16, 2011

Thursday, June 16, 2011

Tonight's picture was taken in August of 2006 at one of Mattie's favorite museums, The La Brea Tar Pits Museum in Los Angeles. The museum is one of the world’s most famous fossil localities, recognized for having the largest and most diverse assemblage of extinct Ice Age plants and animals in the world. Mattie loved watching excavated bones being cleaned and repaired in the museum's laboratory as well as the life-sized replicas of several extinct mammals featured outside the museum.

Quote of the day: Youth offers the promise of happiness, but life offers the realities of grief. ~ Nicholas Sparks

I spent most of the day at home doing chores and working on Foundation items. Over the next two weeks I will be focused on wrapping up all unfinished Walk items.

This evening, I had the opportunity to see the musical Wicked. Peter and I saw this musical together in 2003, when it first came out. I was very familiar with the show even before I saw it in 2003 because I have the CD. In fact, even Mattie knew the music since we listened to all sorts of musicals in the car together. Peter and I differ on our feelings about Wicked, so I knew he would not want to see it again.

My friend Tina arranged for a group of us to go to the theatre tonight, since this was an end of year event for her daughter's Girl Scout troop. I invited my friend, Christine to come along and we had a chance to catch up with each other. Music and connecting through art with my friends are important to me, and I was happy that Christine was just as happy to have this time and experience together.

Wicked celebrated its seventh anniversary on October 30, 2010. It is currently the 17th longest-running Broadway show in history. Wicked tells the story of the witches from the Wizard of Oz. In essence it illustrates and helps explain how the evil witch became evil and how the good witch became good. In fact, the musical asks us in the beginning, whether evil is something one is born with or simply learns?! Elphaba, the future Wicked Witch of the West, and her relationship with Galinda, later known as Glinda, the Good Witch of the North is explored. Their friendship struggles through their opposing personalities and viewpoints, rivalry over the same love-interest, their reactions to the Wizard's corrupt government, and, ultimately, Elphaba's public fall from grace. The plot begins before and continues after Dorothy's arrival from Kansas, and includes several references to the events depicted in the 1939 film The Wizard of Oz as a backstory.

Tonight's performance was very powerful. We saw the wicked witch portrayed by Dee Roscioli, who has played this part in more performances than any other actress. Her voice was down right incredible, rich, and frankly you just wanted to continue to hear her sing. She captured her audience with the beauty and depths of her voice. But the plot to Wicked is actually complex. It isn't like a Disney movie where we know the distinct lines between good versus evil. In Wicked the good can be evil and the evil can be good. In fact there is a fine line between these two forces, and as the musical points out sometimes people do good because of the attention it brings them rather than the ultimate desire to do good. To me this play gives one a lot to think about.

I naturally saw this play in 2003 when Mattie was alive and healthy. I wasn't sure how cancer and Mattie's death would impact my viewing of it the second time around. However, I found I still liked it and it makes me think about the motives behind peoples' actions and the bond between friends. Even friends who have diametrical personalities. There are many memorable songs from Wicked, but the one that gets my attention each time is "Changed for Good." I included that song in Mattie's celebration of life video, which we showed after his funeral. To me it is a powerful song about how one person can influence your life and have a lasting impact. Even if the person is NO longer physically present in your life. I attached a link to this song below.

Changed for Good......................
http://www.youtube.com/watch?v=qtMN3mXmvqU&feature=related

Wednesday, June 15, 2011

Wednesday, June 15, 2011

Tonight's picture was taken in September of 2007. As you can see, Mattie and Peter rode out on the Potomac River in a canoe. Mattie was all about the adventure, and during these boating trips, Peter taught Mattie how to fish. Mattie actually liked to fish and to my recollection usually caught something on each outing. However, Mattie and Peter never kept the fish, they would always release it soon after it was caught.

Quote of the day: The love of gardening is a seed that once sown never dies. ~ Gertrude Jekyll

My dad sent me this quote today and like most quotes it seems to have a much deeper meaning behind it than what you initially read on the surface. Prior to Mattie developing cancer and dying, I certainly liked plants, flowers, and gardening. But when Mattie died, somehow my deep love for him had to go somewhere. So now the nurturing and care that I used to provide to him, is transferred to gardening. I maintain two gardens over the summer, one at our home and the other at Ann's house. I am fortune that Ann allows me to pick the plants that I want and to take up as much space planting as I would like. So when I read this quote and apply it to myself, I interpret it as the love I have for Mattie and that Mattie had for me has created everlasting seeds within me that inspire and motivate me to nurture and create my gardens.

I spent a portion of my day finishing up Ann's Garden. Yesterday and today have been without humidity, so being outside for extended periods of time is very easy. I decided to post six pictures tonight, so you can see what I have been up to. Notice the glass yellow sun that I incorporated into the garden. Both of my gardens this year have the sun and butterflies well represented in them.

Soon after Mattie died, and Ann's father died, she received a tile from a friend with a message on it about miracles. Last year I incorporated that tile into Ann's Garden (as you can see in the picture). I am not sure how I feel about the notion of miracles, mainly because living and surviving through childhood cancer has a way of making you a non-believer. Nonetheless, as I plant and am inspired by Mattie, and I reflect on the fact that his Foundation is called Mattie Miracle, this tile seems to be an important and meaningful part of this garden.

There are two flower beds that I maintain at Ann's house. This is one of them!

This is the second flower bed!

I brought this metal butterfly back from our beach trip, and to me it adds a certain level of color and whimsy to Ann's Garden. Though I am very fond of azaleas, I decided to take on Ann's three big bushes this week and I chopped them back significantly to make room for more plants and color.

This final picture features a pretty painted flower pot on the right. This flower pot has a major story behind it, which I won't reveal here. This and so many other things I do not write about on the blog, yet I plan on incorporating this story into a book. Since I do believe Mattie's story needs to be told on a grander scale, and in telling Mattie's story it tells my story as well. Since he was and still is a central part of my life. Last year I gave Ann this painted flower pot and in it I planted a burning bush. A burning bush has great spiritual significance and it is green in the spring and summer and turns a burning red color in the fall!

Later on today, I visited with Mary, Ann's mom. Mary's roommate is getting used to my company today as well. As I mentioned a day or so ago, Mary's roommate can be challenging, so much so that her caregivers are sometimes frustrated or intimated by her. Any case, this afternoon, Mary's roommate was screaming in pain. So after a period of time, I decided to encourage her to let me help her. Mary's roommate has lost the ability to control her body. Meaning she may want to move her feet, but her brain just can't process that message and move her body parts. She gets very frustrated by this, as anyone of us would! So her head was slumped in one position and her knees were like dead weights against each other and the pressure was hurting her legs. So again I talked her through the problem and told her what I was going to do before doing it. I moved her legs and repositioned her head, and soon there after she fell asleep. Actually spending time with Mary and her roommate, further confirms for me that in the grand scheme of life it is the connections, the TIME we make for one another to listen and communicate that is special and memorable. It isn't the tasks! Because tasks are things and things are forgettable, but emotions and feelings last a lifetime. Sure Mary's roommate maybe cognitively impaired and may not know who I am per se tomorrow, but she is sharp enough to respond to one's tone of voice and my willingness to treat her as a person.

Tuesday, June 14, 2011

Tuesday, June 14, 2011 -- Mattie died 92 weeks ago today.

Tonight's picture was taken in June of 2007. Mattie was proud of his airplane drawing behind him and was happy to show it off!

I Heard Your Voice in the Wind Today ~ Unknown

I heard your voice in the wind today and I turned to see your face; The warmth of the wind caressed me as I stood silently in place.
I felt your touch in the sun today as its warmth filled the sky; I closed my eyes for your embrace and my spirit soared high.
I saw your eyes in the window pane as I watched the falling rain; It seemed as each raindrop fell it quietly said your name.
I held you close in my heart today it made me feel complete; You may have died...but you are not gone you will always be a part of me.
As long as the sun shines... the wind blows... the rain falls... You will live on inside of me forever for that is all my heart knows.


As we enter the 92nd week of Mattie's passing, the poem I posted tonight seems appropriate. It is amazing how the wind is no longer just the wind, that a passing butterfly is NOT just a butterfly, and certainly the moon isn't just some sort of celestial body. Instead, for us these are all symbols and connections we have with Mattie. This poem captures that quite beautifully. Some times I feel trapped now in a world that doesn't understand the magnitude of my loss nor the pain one will always have over this loss. 

Though this song has absolutely NOTHING to do with Mattie, it was playing in my head all day. It is a Lerner and Loewe song featured in the play, My Fair Lady. The song is entitled, "I've grown accustomed to her face." In particular, the verse below gets me because it is almost impossible to grow accustomed to your son's face and then not see it again.

I've grown accustomed to her face. She almost makes the day begin. I've grown accustomed to the tune That she whistles night and noon. Her smiles, her frowns, Her ups, her downs Are second nature to me now, Like breathing out and breathing in.

For those of you not familiar with this wonderful song or the movie My Fair Lady, I attached this link for you to see the clip. http://www.youtube.com/watch?v=HroAq_E075Y

I spent part of my afternoon today with Mary, Ann's mom, and Mary's caregiver, Shayla. I think having lunch together and then chatting was wonderful stimulation for Mary. Mary and I sometimes reflect on the fact that we have only known each other for two years, and yet it seems like much longer. Or as she says, "a lifetime."

There were many aspects of today that left me teary. This evening, I spent about four hours at two different hospital meetings. The first meeting was about creating a grief and bereavement program at the hospital for families who lost a child. Three other families were in on this meeting as well, and as we were discussing ways to help bereaved families, I realized the word TRANSITION kept coming up. I have found that NOT all grieving parents need the same thing to heal and accept the loss. Of course that doesn't surprise me considering that Peter and I, who have a lot in common, need different things and at different times as we process Mattie's death. However, many parents find comfort and support from talking to other bereaved parents. I unfortunately am NOT one of these people. However, this brought me to my point, that the transition from living in the hospital and being surrounded by hospital support, to being cut off from this support once Mattie died was impossible to handle. As I explained to the hospital employees tonight, many people from my outside world do not always understand me. Some do not understand the chaos and trauma I lived through and continue to deal with, and most of all, it is hard for friends to sit with someone who is sad, depressed, and/or crying. Which is why follow up grief and bereavement services are NEEDED at the place of treatment.

Before I went away on vacation, I worked with Dr. Aziza Shad on writing a grant to establish a grief and bereavement program at the hospital. Though the grant was beautifully written, the corporation offering the grant summarily denied it. NOT because of the grant itself, but the content. They did not want to financially support a program that doesn't directly impact a sick child. I can not tell you how disappointed I am to hear this response and to learn of this corporation's perspective. However, this is NOT just this one corporation. Grief and bereavement issues are in a way taboo issues in our American culture and certainly they are not very enticing to support financially. So we will continue to look for other funding options.

However, I found the meeting about grief and bereavement very emotionally jarring. Toward the end of that meeting and into the next one, I was crying. So overall, it has been a challenging day, which seems quite fitting for a Tuesday. I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Know that you are thought of often and by many. Much love this Tuesday and everyday."

Monday, June 13, 2011

Monday, June 13, 2011

Tonight's picture was taken in July of 2008, about a week before Mattie was diagnosed with cancer. As you can see, he looked happy and clearly had energy. This was one of Mattie's favorite things to do on Roosevelt Island.... feed the ducks! I always came prepared with a bag of bread or crackers and no matter how big the bag was, in the end all the food was demolished.


Quote of the day: I can release the pain that touches my memories, but only if I remember them. I can release my grief, but only if I express it. Memories and grief must have a heart to hold them. ~ Alan Wolfelt

Today was a day filled with chores. In our living room we had three huge picture windows. They are wonderful in the sense that they bring in great light and help connect us to the outside, but they aren't so great when they are dirty. After a long winter, the windows were in need of attention. So today was that day. I spent the morning cleaning the inside and the outside of these floor to ceiling windows. However, it is special to have them clean because now we can see our terrace and flowers quite clearly.

Later in the day I went to Ann's house and tended to her garden. I thought the planting was done, but I have noticed there is more to do, so it is my hope to finish it this week. So far all the plants have taken, but the initial few weeks require a lot of time and attention to get these flowers acclimated and happy. I went to spend some time with Ann's mom, Mary today. Mary was telling me that she is worried about me and wishes that my life were happier. In the midst of talking with Mary, I could see Mary's roommate was in pain. Her roommate was in bed and is a feisty person. She likes to be independent and really doesn't want help for the most part. I asked her roommate several times whether I could help her. By my third ask, she decided to take me up on my offer. Mary's roommate doesn't like to be touched and deals with aspects of paranoia. So I knew I couldn't just walk up to her and help her, and grab her feet and move them away from the wall. I knew I had to take it in stages and first explain to her what I was observing and what I thought I could do to help her. Once I told her why she was in pain, and that I needed to move her feet away from the wall, she instantly understood and was compliant to work with me. Mary's roommate can be very combative with her caregivers, but I think today's example once again reminds us that if you treat a person with respect and empower them to help and make decisions, a positive outcome is usually possible. Certainly my way takes MORE time, than perhaps just grabbing her and helping her outright but in the end, Mary's roommate feels better about being a part of the process and this also helps build rapport and trust between people. 

Peter and I were invited to a high school graduation party tonight. Tamra's daughter, Meredith, graduated from high school this weekend. Meredith had the chance to get to know Mattie when he was battling cancer. In fact, Mattie was very fond of Meredith and her sister, Louise, and they came to visit Mattie often both at home and in the hospital. That level of kindness will never be forgotten. Meredith is a special young lady, and despite having a house full of guests, she came over to sit with Peter and I and chatted for a while. In fact, she introduced me to her English teacher and told her teacher that I am one of the inspirational people in her life. What can I say? I was deeply touched by that remark. As I was leaving, Tamra told me I looked like Audrey Hepburn, a woman who I deeply admired. So I would say in one evening I received two very high compliments! 

On the way home, guess who was up in the sky looking at me?! No other than Mattie Moon!

Sunday, June 12, 2011

Sunday, June 12, 2011

Tonight's picture was taken in February of 2008. We took Mattie to a local mill. That particular weekend the park's service were showing attendees how to tap sugar maple trees to get syrup. We all found the whole process fascinating and everyone got to taste the syrup. It was a cold but memorable day!


Quote of the day: It is the peculiar nature of the world to go on spinning no matter what sort of heartbreak is happening. ~ Sue Monk Kidd

Peter began his day on Roosevelt Island. Peter is a very early riser, he is up before 6am, even on the weekends. In that respect we are polar opposites, since I have never been a morning person. Fortunately he is an early riser because in the heat of the summer, he is still able to walk on Roosevelt Island. This morning, he captured a photo of this beautiful oriole! I love the sound that orioles make and their beautiful red wings!

Along Peter's journey on the Island, he came across this huge beetle. To me this was a sign from Mattie. Mattie would have absolutely loved this creature. Peter actually picked this beetle up and moved him to safer terrain so it wouldn't get stepped on by other walkers!

Peter also spotted a Great Blue Heron as well. There is one particular tree where we know Herons like to perch, and today apparently the perch was occupied!

Peter and I went out to lunch together and we had a chance to chat about the various feelings that have been bothering me lately. As always he was very understanding and got what I was saying right away. However, I have found that with Mattie's death I find that I no longer fit in anywhere or with anyone. All my friends have children and now of course I don't. So what held us together and what we communicated about has naturally changed. So in essence losing Mattie has affected my identity on so many levels. I lost my identity of being a mom, and I lost the social networks that come with having a child. Some days I deal with that better than others, and some weeks, the reality hits me much harder.

This week I will be visiting Ann's mom, Mary each day. When Ann goes out of town, I try to provide Mary with company and emotional support. Mary and I chatted for three hours and I helped her with dinner. We haven't had an opportunity to see each other for a while, since I was quite busy with the Foundation's Walk. So this gives us an opportunity to spend time together again.

This evening Peter took pictures of the beautiful clouds in the sky. This particular picture caught my attention and I am sharing it with you tonight. It had rained earlier and seeing the sun come out and shine through the clouds seemed like a miraculous sight.