Tuesday, July 6, 2010

Tuesday, July 6, 2010 -- Mattie died 42 weeks ago today.

Tonight's picture was taken in May of 2003, at my graduation party. Mattie was a year old. Pictured with Mattie and I is Carol. Carol was my dissertation chair and advisor. I can assure you if Carol allows you to graduate you have earned your stripes. As she always would tell me... "Vicki NOT all dissertations are created equal." Meaning that it took me longer to get my degree because I stuck to my principles and captured meaningful data about caregivers of older adult family members, but in Carol's mind my work was worth the wait. I reflect on that comment now. At that point in my life, completing my doctorate was probably the hardest, most humbling, and challenging experience I ever had! Little did I know that was only good preparation for doing battle in a hospital for over 15 months, and advocating for my most precious asset! Though Mattie did not get the concept of my graduation, he definitely understood the concept of a party, as you can see with his big sweet smile!

Poem of the day: MATTIE by Nancy Heller Moskowitz


It's Tuesday, another week has passed.
I miss you, our child, our son.
Your place on earth gone,
Your fears, your hopes, your wondering,
How life would ever be!
I miss you, our child, our son.
Each day, a picture etched within my soul
Of hopes and dreams,
For you and us,
As Dad and I grow old.
For you, eternity, a final resting place,
For us, work left to honor you.
I miss the warmth of your embrace.
Each morning and each night,
Only to be replaced,
By emptiness and intermittent light.
Others listen and offer their best,
I pray they never are put to the test.
Yet, I am strengthened by the fact,
That we gave our all,
To you, our son,
Our gift, Our life!

As today marks the 42nd week that Mattie is gone from our lives, I reflect on the poem that my friend and colleague Nancy sent to me today. Nancy is very aware of the fact that Tuesdays are challenging days for me, and her poem captures many of the feelings I have now and most likely will always have in my life. With the birth of Mattie came great hopes. Hopes for Mattie's future, and our future together as a family. Now Peter and I are left with only memories and the convictions to help other children like Mattie and their families. As I know others try to listen and understand our pain, it is my greatest hope that none of you will have to experience this first hand, but at the same time step back and appreciate what you do have. I remember the daily stressors, the little things that would set me off in a given day, but Peter and I are living proof that things can get very bad, and when faced with life and death decisions, everything else pales in comparison.

I went to visit my urologist today. After Mattie's death my body was physically depleted and I began to experience various ailments. This urologist has been working with me since October. She is a very competent individual, and I know she takes my case seriously and also to heart. Each time I meet with her, she lands up in tears and sniffling. Mainly because I do not think she knows how she would survive if her children died. Before I met with her today, I had the fortune of chatting with her resident from Georgetown University Hospital. He was young, energetic, and very professional. He could see in my chart that I lost Mattie, and he spoke to me about that. While I was chatting with him, I could also hear the doctor talking to a patient in the next room. The walls are so paper thin. I commented to him on that, and clearly he made a mental note of what I was saying. After he left the room, he then went into the adjacent office to brief the doctor of the information he obtained from me. Like before with the other patient, I could hear their conversation VERY clearly. It is a strange feeling to hear two doctors talking about you, however, the resident must have told the doctor that I can hear everything, and after a few minutes, I couldn't hear anything else. He clearly told her to lower her voice. It isn't only this doctor, I can hear nurses talking to patients in neighboring rooms, so to me it is the physical space. I just shake my head when I visit, because to me it screams......HIPAA compliance issue!

I will spare you the details of the visit, but four things struck me about our conversation today. The doctor always remembers that I wear of piece of Mattie jewelry. Each visit she comments about it. The second thing which interested me is she asked me what I was "doing" now. How I spent my days. Ironically Denise and I just spoke about this word, "doing" yesterday over lunch. In comparison to my former life, pre-cancer, I was a DOER. That defined me, now I sometimes grapple with how to answer that question. However, Denise helped me see yesterday that I am DOING. Grief work is doing, and keeping Mattie's memory alive is doing, keeping the Foundation running is doing, and the list began to grow as Denise and I were talking. So in essence I was able to articulate today what I was "doing" to the doctor. The doctor was simply astonished with all that Peter and I have been through that we want to devote our time to helping families battling cancer. By not just throwing money at a problem, but instead investing our time, energy, and hearts into each project we take on. Her amazement caught me off guard, because to me, it is quite natural that after surviving hell, one would feel compelled to help the next person walking this awful road. The third item we discussed was where Mattie was buried. She asked me if I went to visit his grave site. I told her that I did not have to because his ashes were at home with me. She too is Catholic, and had many questions about the whole cremation process. She wanted to know if Mattie's ashes were in an urn, and I enlightened her that urns are rarely used anymore, since people choose creative ways to store and display a loved one's ashes. The final comment that I reflected on throughout the day was her point that certain doctors should be given training on how to deliver bad and difficult news to family members. I told her that in my opinion this should be mandatory for ALL physicians. I then proceeded to tell her that no matter how devastating information is delivered, it will simply be bad. So I don't think classes need to teach the delivery per se, as classes should address instead the follow up care that should be provided to patients. The beauty of Georgetown in my mind is that yes we received the worst possible news. However, the doctors NEVER turned their backs on us, and helped us through Mattie's death and beyond. Even today, we are very connected to several of Mattie's doctors. When you lose a loved one, the impact of that news isn't just on the day you hear the news, but the impact lasts a lifetime. Not all doctors are willing to commit to this kind of long term relationship. We are fortunate enough to have found a rare breed.

After the doctor's visit, I went to visit with Ann. We had lunch together, and her friend and neighbor, Tina joined us. Since it was incredibly hot today, 105 degrees!!!!, Tina invited us back to her pool. We all had a fun time watching the kids and Tina's dog, Max swimming in the pool. It was a wonderful setting to be surrounded by trees and to be around a very normal summer experience. Children playing, having fun, around a pool. Nothing in my life is normal anymore, so when I have these moments of normalcy I do land up reflecting upon them. I also reflect on the generosity of others in my life. I know people want to help us as we deal with our grief, and I guess I want to say every kind gift, invitation, and message does not go unnoticed.

Peter did go to work today, and he appears to be feeling better. But the recovery from what he and I had has been very slow. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I hope Peter is feeling better today. The heat makes it even more exhausting when you don't feel well. It sounds like you had a good time at lunch. As you said, sometimes we all need a reality check and it was lovely of Denise to provide one in such a positive way for you. You are a terrific teacher; not everyone is as well liked or respected as you are. Even though the classes for the cohort ended late in the evenings, I remember waiting after class to speak with you and seeing many of my classmates doing so as well. I do hope you can find your way back to teaching as you have so much to give in that arena. Time may put a scab or a scar on a wound but that doesn't mean it is gone, only closed over so that we can resume doing our daily tasks. Words, events, memories can all break that open in a moment and cause you to be "elsewhere" or overcome by emotion. As time passes those moments may become shorter or less frequent but they will likely happen for the rest of your life. Losing someone you love, particularly a child, impacts your life forever. Mattie will always be a part of who you are and that's a good thing. I hold you gently in my thoughts."

Monday, July 5, 2010

Monday, July 5, 2010

Tonight's picture was taken around July 4th of 2003. That was Mattie's first trip to the Outer Banks, NC. He was NOT a happy camper by the water or on the beach that year. So we spent a lot of time admiring the sights and sounds of the Atlantic Ocean from the deck of a house we rented. It is funny how cancer puts things into perspective quickly. Back then, when Mattie was one year old, my biggest problems were Mattie wasn't walking or talking yet. Those seemed like legitimate problems at the time. As I began to grow as a parent with Mattie, I learned that Mattie had his own time frame to do things, and he wasn't going to do anything unless he was ready. In many ways, once I learned that key to parenting Mattie, I began to realize that developmental bench marks are just that.... they are a guide, but not something that every child follows to the T. We sure had many ups and downs with Mattie prior to his cancer diagnosis, but one thing is for certain, it was through Mattie that Peter and I learned more about ourselves and life than we could ever have achieved through reading, education, and hearing stories from others.

Poem of the day: The Visit by Charlie Brown


You were here just yesterday
And oh, how much I wished you'd stay
Your visit, it was much too brief
And of my missing you, brought little relief
I saw your spirit in a butterfly
You came out of the empty sky
You visited each of your favorite things
And then you were gone on gossamer wings
I spoke to you when you were here
And told you of my greatest fear
That somehow I would lose your memory
And that Mattie's mom I would no longer be
You showed me with your presence yesterday
That you've never really gone away
And that you'll come back and visit me
Mattie, your mom, I will always be.

I want to thank many of you who wrote to me today to let me know how much you enjoyed seeing Mattie's flag flying on the blog yesterday. Mattie's flag continues to fly today as well, and hopefully through the summer.

Peter had a rough night of sleep and woke up feeling sick as well. So he was out of commission today. While he was resting, I went out to lunch with my friend and colleague, Denise, and her daughter, Marisa. Marisa babysat Mattie in the summer of 2009, before he died. She helped me on numerous occasions when I needed a break from being home and was drowning in the overwhelming care and emotions of Mattie's cancer. Babysitting a healthy 7 year old can be a challenge, but Marisa was confronted with a 7 year old dying from cancer. That is NOT an easy role to walk into. Watching Mattie meant really playing and entertaining him, but it also meant watching his EVERY move so he wouldn't hurt himself, and monitoring his symptoms and pain. The fact that Marisa did not shy away from working with us, says something about her character. I feel this way about all the young people who were willing to play with Mattie and who wanted to offer us a break. That kindness is a rare gift, and I must imagine that Mattie has influenced their lives somehow whether personally or career wise. Those of you who attended the Mattie Miracle Cancer Foundation Pediatric Cancer Walk, know Marisa. She coordinated the bake sales at both the 2009 and 2010 Walk.

I really hadn't been out of our home since Friday, so it was nice to get out and moving today. My energy level continues to improve which is a wonderful feeling, because on Saturday I truly thought I was very sick. I felt like I was in an absolute fog and listless. I chatted with Denise and Marisa about all sorts of things today. Denise and Marisa are very sensitive and non-judgmental. We talked about one of my favorite lines, "time heals all wounds." We talked about expectations and the expectations other people sometimes have for my healing process. The problem with that of course is there is NO real guideline for healing after the death of a child. There can't be a guideline, because grief and loss is very personal and is handled differently by each person. So therefore the expectations of others is really irrelevant for me. I have learned not to have expectations for my healing process, I instead take it one day at a time. It was a philosophy I adopted through Mattie's cancer, and sometimes that is the best one can do.

Denise did give me a reality check. I am sometimes not a good judge of my own accomplishments, and Denise wanted to let me know that she thought Peter and I are doing a fabulous job with the Foundation. We have achieved so much with it so far, and we have only lost Mattie 10 months ago. Denise was also reminiscing about the times she would come and guest lecture in my classes. She was telling Marisa that no matter what course I was teaching, students surrounded me to talk with me before and after class. I suppose I forgot those moments, or maybe I assumed that this happens to all professors. But as Denise aptly pointed out to me, that students surrounded me because of me, not because of my position. Either case, hearing Denise reflecting on the impact I may have made in my students' lives made me feel happy.

Toward the end of our lunch, Denise asked me if I was okay. I asked her why, because I did not feel visibly upset. Denise then focused on the baby who was sitting right next to us. The baby was fussing and crying, and Denise was correct. Typically this sight would have bothered me. In fact seeing pregnant women really bother me. To me seeing someone pregnant is a symbol to me of the joy I no longer have in my life. It also is a reminder to me that people have healthy children every day, but I wasn't as lucky. However, seeing the baby today did not bother me. I am not sure why. Maybe because I was too engrossed in conversation to really focus upon my surroundings. 

After lunch I ran some chores and then came home to check on Peter. I made a dinner I thought his stomach could tolerate, and the poor guy, I had him eating outside tonight on the deck. Mind you it is 100 degrees in the shade in Washington, DC. Peter was a trooper, but neither one of us made it outside very long.

I would like to end tonight's posting with two messages. The first message is from my mom. My mom wrote, "I saw the picture of the flag flying from your balcony on the blog and it is awesome sight. It makes a statement about the outsized passion for living that Mattie brought to every project he undertook. What a wonderful contribution his big, beautiful flag made to the vista of the viewers who parked on the ramp across from your complex who were there to see the spectacular fireworks of the DC July 4th celebration. Even though Mattie was not physically present, his flag was there in his place and by flying his flag from the balcony, his actions of last year may have inspired others to fly flags of their own to commemorate the birth of our nation in future years. Here is another instance of Mattie's influence on the behavior of others through an action he initiated when he was alive. It is remarkable how Mattie touched many hearts and influenced many minds directly and indirectly in the short time he was with us! Incredibly, so many of them, he did not even know!"

The second one is from my friend, Charlie. Charlie wrote, "I am sorry that this holiday weekend continues to be physically difficult for you and Peter. I am not surprised by Mattie's choice of the largest flag he saw; he always seemed to do things in a big way once he'd made up his mind about what he wanted. I am sure he appreciated seeing that flag and I am sure it meant a lot to Peter to set it up and fly it from your balcony. I watched the fireworks last night and thought about Mattie and both of you and I am sure that many of Mattie's and your friends and family did as well. As Nancy so nicely stated, it is fortunate that you and Peter have each other for support and understanding; while it doesn't lessen the pain or speed the healing, it does strengthen the spirit and make the path a little easier to bear. I hold you gently in my thoughts."

Happy Fourth of July

Sunday, July 4, 2010

Tonight's picture was taken on July 4, 2009. This was Mattie's last Fourth of July. We joined Ann and her family that weekend at a local resort. As you can see Mattie was pictured with Abigail on the left and Jackson (a friend of Abigail's) on the right. That was a tough weekend for Mattie. Part of him wanted to play with the other children and the other part of him was very depressed and therefore preferred staying in the hotel  room. I certainly understood his internal conflicts and we supported him through whatever he wanted to do that weekend. However, you should know that Jackson is a huge Lego fan, so Mattie and Jackson bonded quite well over building and designing. Because Mattie was into Sponge Bob at that time, Mattie and Jackson were building all sorts of Sponge Bob creations. 

Poem of the day: July by Charlie Brown


July once meant
All good things
And the special joys
Only summer can bring
But now I'm saddened
And full of despair
Watching the fireworks
Without you there
When those starbursts
Light up the night sky
I will be watching
Trying hard not to cry
Because while this month
Contains my joy
It also means the loss
Of my Mattie, my boy
Our wedding anniversary
And my birthday too
Are all overridden by
The loss of you
In this first year
Of overwhelming pain
I am doing my best
To just remain sane
So my friends
Can you be patient I ask
As I deal with my grief
A monumental task
So on this July fourth
When the fireworks are done
I'll have spent the night
With memories of my son

In honor of the Fourth of July, which is a very special day for our Country, I would like to share some facts about Independence Day with you as well as some pictures we took today. We hope you enjoy them and that all our readers had a good holiday!

Independence Day honors the birthday of the United States of America and the adoption of the Declaration of Independence on July 4, 1776. It's a day of picnics and patriotic parades, a night of concerts and fireworks, and a reason to fly the American flag. During the American Revolution, the legal separation of the Thirteen Colonies from Great Britain occurred on July 2, 1776, when the Second Continental Congress voted to approve a resolution of independence that had been proposed in June by Richard Henry Lee of Virginia. After voting for independence, Congress turned its attention to the Declaration of Independence, a statement explaining this decision, which had been prepared by a Committee of Five, with Thomas Jefferson as its principal author. Congress debated and revised the Declaration, finally approving it on July 4. A day earlier, John Adams had written to his wife Abigail:


The second day of July, 1776, will be the most memorable epoch in the history of America. I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival. It ought to be commemorated as the day of deliverance, by solemn acts of devotion to God Almighty. It ought to be solemnized with pomp and parade, with shows, games, sports, guns, bells, bonfires, and illuminations, from one end of this continent to the other, from this time forward forever more.

Adams's prediction was off by two days. From the outset, Americans celebrated independence on July 4, the date shown on the much-publicized Declaration of Independence, rather than on July 2, the date the resolution of independence was approved in a closed session of Congress. Historians have long disputed whether Congress actually signed the Declaration of Independence on July 4, even though Thomas Jefferson, John Adams, and Benjamin Franklin all later wrote that they had signed it on that day. Most historians have concluded that the Declaration was signed nearly a month after its adoption, on August 2, 1776, and not on July 4 as is commonly believed. In a remarkable coincidence, both John Adams and Thomas Jefferson, the only signers of the Declaration of Independence to later serve as President of the United States, died on the same day: July 4, 1826, which was the 50th anniversary of the Declaration.

 
When I woke up this morning and opened our window blinds, the first thing that I saw was a HUGE American flag flying outside our window. I was disoriented at first and thought it was our neighbors who were displaying a flag. But as I began to focus on it, I realized it was attached to our balcony. I knew immediately that Peter was up and that this was the product of his handy work. However, this flag has a story! This doesn't surprise you, does it?
 
Right before Mattie died, he and Peter went to Home Depot together. From Mattie's wheelchair, he pointed to this HUGE American flag. He wanted Peter to buy it and display it outside. At that point in time, whatever Mattie wanted, we were trying to accommodate his requests. Well this HUGE flag made it to our home but we never put it up. There just wasn't any time. Today was the first day I saw this flag unfolded and actually flying. I quickly realized that Peter displayed this flag in honor of Mattie. You have to understand just how big this flag is, it is most likely my height so it is a good five feet tall. Mattie never did anything small, and this flag is our reminder. Mattie in essence was celebrating July fourth with us today. You can see three flag pictures below!

 

I asked Peter to take a picture of the first car to set up shop right on the on ramp of Route 66. These folks parked on the on ramp and set up lawn chairs to prepare for the firework show. That may sound cute and a good idea, but you should know that this was a functioning on ramp, and there were cars flying by these people. This whole scene made me nervous, because they could have been hit by a car. However, by the time the night progressed, there had to be about 30 other cars parked on the on ramp right along side these folks!

The next six pictures were taken tonight during the Capitol Fourth Fireworks show. Peter did a very good job capturing the beauty of the display.

The one great thing about city life is evident on July 4th! We just walk outside our complex, and we can see an amazing fireworks display. We were surrounded by a ton of people, people of ALL ages.
During the fireworks, a little boy behind me started singing, Twinkle Twinkle Little Star. He was very proud of himself and thought it was a great song to sing, considering what was sparkling in the air! The song was darling and also reminiscent of my days with Mattie. This was one of Mattie's bedtime songs that we always would sing together.

It is hard to see the true beauty of this color. But this beautiful lavendar color was featured this year in the displays. It was simply breathtaking, and my favorite part of the show.

This was Peter's favorite part!

As the 20 minute spectacular show was coming to an end, the colors and the non-stop displays were overwhelming. To me they were the best I have seen in DC, and I have seen many July fourths in the District. It was hard to believe that people could time such beautiful displays and colors together. I am not sure what I was taken aback by more, the fireworks, or the fact that there were tons of people all around us. None of them were moving. Every camera was out and taking pictures. Traffic in the street STOPPED moving, people were smiling, and appeared united and appreciative. It was just a special moment, and these special moments always bring tears to my eyes.

Though July 4th is a festive day, I think it is very appropriate to include this song in remembrance of the day. We have our freedoms thanks to the dedicated men and women in our United States military. I have no doubt that no matter what city you are in, you most likely heard Lee Greenwood's song today.

"God Bless the USA" is an American patriotic country song written by country musician Lee Greenwood.  It reached number 7 on the country charts when originally released in April 1984, and was played at the 1984 Republican National Convention with President Ronald Reagan and first lady Nancy Reagan in attendance, but the song gained greater prominence during the Gulf War in 1990 and 1991, as a way of boosting morale. The popularity of the song rose sharply since the September 11, 2001 attacks and during the 2003 invasion of Iraq, and the song was re-released as a single, re-entering the country music charts at #16.
http://www.youtube.com/watch?v=RINqibpWOzQ&feature=related


This has been a hard weekend for Peter and I. I am slowly regaining my strength but unfortunately Peter is feeling ill again. I spent a great deal of time outside gardening. It was a hot day, but I wasn't in the sun, and just enjoyed the fresh air. While gardening I was stunned by my sighting. A beautiful monarch butterfly flew right into our deck space. I can't recall when I saw a monarch last in the city. It is a rare occurrence. The butterfly flew right near me, circling, and then visiting Mattie's wind chimes, Speedy Red, and the fountains. I swear today I was visited by Mattie in butterfly form. In fact, I started to talk to the butterfly. But like all delicate and precious things, its visit was short lived. However, this visit carried me through the day.

I would like to end tonight's posting with two messages. The first message if from my friend, Charlie. Charlie wrote, "I know that today will be tough for you. Like most small boys, Mattie delighted in the sights and sounds of the fourth of July and that the celebrations and fireworks will go on without him here to appreciate them is so hard. I am sure his friends will be watching and thinking of him on this day. Although Mattie left much too soon, I am sure you would not have wanted the seven years of love that you shared with him not to have happened. Those special dates in July (your birthday and wedding anniversary) made that little boy's presence in your life possible and so for that reason, as well as for others, I hope that you can find a way to celebrate those days in your life. As I practice today I will send you my energy to help you through. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "As I read the blog for the last few days, I kept seeing Peter and you being together. I am glad that you have each other to comfort and understand the emotions of your loss. As you know, many are not so fortunate. They don't have that someone where their deepest feelings are understood or accepted. It doesn't make the pain go away any faster, it just helps to give it a place to vent. I, too, remember Little House on the Prairie. It talked of life's twists and turns and offered a sense of hope even though struggles abound. As I remember the show, it created a way to see life outside of our own experience. I remember when I felt 'stopped up' and knew I needed to cry or just feel any emotion, my friend and therapist would suggest watching a show that would evoke the feeling. It was very cleansing and cathartic. Right now, this show appears to be your access to deeply felt emotions. Yesterday's poem was so powerful, I actually had a difficult time reading it. I realized it was because of the depth of it's message. It reflected on a short life which was remembered long after its end. Mattie has brought so many people together, in life and death. He and you have created an environment where others can feel connection and understanding, especially, times where clarity of thought is difficult. I am glad that you are beginning to heal from your flu. Please be gentle with yourself over the next few days as you gain strength. Tanja's sharing was beautiful and no wonder you cried. I know it may feel strange to burst into tears in public places, yet, this was a safe place and you were able to feel your feelings. Like the poem of the day before, you do open your jar and that is an important step. I used to wonder why people kept their 'jars' closed. I understand now that was their way of coping. Before I held judgment, now I hope it is understanding."

Saturday, July 3, 2010

Saturday, July 3, 2010

Tonight's picture was taken on July 4, 2006. Mattie, Peter, and I were invited to spend the fourth of July on Zachary's family's boat. As many of you know, Mattie and Zachary were very close buddies in preschool and were practically inseparable. Mattie loved seeing the fireworks from the boat and talked about it for many years later. It was a memorable experience to actually be so close to the fireworks and to have the Washington monuments as our back drop.


Poem of the day: Beginning by Karen O'Leary


The pain rolled
over me knocking
me off my feet
like a tidal wave.
The dawn came.
The heavens opened,
bringing the light
of hope.
Under His guidance
I stood, taking
one shaky step
ahead.
It was the beginning.


Now that we are firmly into July, I find that my feelings about the month have changed. In the past, I always loved this month. July means summer to me, and I love the warm weather. My birthday and wedding anniversary also fall within July, so in the past these occasions made the month quite festive. Now however, July signifies the month Mattie was diagnosed with cancer, July 23, 2008 to be specific. I will never forget that day, or the traumatized feeling I had on that day, a feeling that only continued for many weeks thereafter. The feeling of shock that I felt back then remains entrenched in my mind. So much so, that while Mattie was in treatment, the seasons obviously changed. His chemotherapy went through the summer, fall, winter, and spring. However, in my mind, I was trapped in the summer of 2008. The seasons and temperatures were changing around me, but not in my head. It is like time stopped for me when Mattie was diagnosed. Not sure how to accurately describe this, other than once the crisis began, everything else for me stopped. Life, seasons, time, eating, and the list goes on. Everything was dispensible to me as I was caring for Mattie.

I woke up this morning exhausted. It isn't a good feeling to start the day off this way. My flu symptoms have improved and practically disappeared, but the fatigue and achiness are still with me. Peter and I had hopes of walking today, but I simply wasn't up to it.

We saw our neighbor, JP, today. JP was out walking JJ, our resident jack russell terrier. JJ and Mattie were good buddies and practically grew up together. JP let me know that JJ and Lola, JJ's "significant other," will be having puppies very soon. I know this news would have brought Mattie great joy. Mattie always wanted one of JJ's puppies, and JP always told Mattie if he worked hard at regaining his strength and learning to walk again that he would give Mattie one of JJ's puppies. It was an incentive Mattie really liked! It is a sad commentary that Mattie left us before he got a puppy of his own.

Peter and I ate dinner outside on the deck tonight. We were surrounded by our flowers, tomatoes, herbs, lemon tree, and the of course Mattie's fountains. We are in the city, but our deck makes us feel disconnected from city life. While eating, Peter pointed out how as the sun was setting, it changed the hues on the building in the distance. He had me stare at it and we talked about how the colors were rapidly changing and in the process the building looked quite different with each color change. I told Peter that he is a real impressionist at heart, not unlike myself. Afterall the founders of the impressionist movement valued the use of light at capturing the depths, movement, and complexities of simple objects and scenes. It was a very unplanned dialog, but we both got a kick out of it.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I understand your anger at the phrase "new normal" but as you said, it doesn't disturb everyone the same way. Everyone who is walking in grief seems to have their own phrase that sets them off when they hear it. The best thing we can do is to be sensitive to others and their feelings about how they wish to express what confronts them. I think that your crying when you heard what Tanja said was to be expected. It is one thing for someone to say they remember your loved one and another to remember and honor something about them. That brings it to a whole new level. To clarify it for those readers who might not understand, some time after my mom passed away, a friend said he had gone to watch Jai Lai (my mom loved that) and that he bet her numbers (4-1) when he noticed one of her favorite players in the game wearing one of the numbers she liked. I found my eyes filled with tears not just because he remembered her but that he had given me the gift of a specific memory that might have gotten away from me. That's the difference. What I love about children (Abigail in particular) is that they freely share what they are thinking without all the censors that often remove the love and caring from what we say in hopes of making things less painful (which doesn't work). I am glad you and Peter finished out the day by sharing your experiences and feelings; that's so important in staying close through the grief process. As I practice this weekend I will send you my energy to help you get through the holiday; I know you will see those fireworks and miss Mattie's reaction to them. I firmly believe he is running his own show elsewhere and it is far beyond what any of us can imagine. I hold you gently in my thoughts."

Friday, July 2, 2010

Friday, July 2, 2010

Tonight's picture was taken in July of 2007. Mattie was five years old. He climbed one of his favorite rocks at Roosevelt Island, and we snapped a picture of him at the top. Mattie was always a very cautious child, however, after spending two years in preschool, he began to venture out beyond his comfort zone, and learned to enjoy climbing, jumping, and running around. Roosevelt Island was a special place for Mattie, and continues to hold special meaning for Peter and I. It is hard to believe three years ago Mattie was healthy, happy, and seemed to have a bright future ahead of him.

Poem of the day: Losing a Piece of Me by Tammie Thompson

Imagine someone has opened your chest with clawed hands,
grabbed your heart in a crushing grip and torn it from your body.
But you do not die. You remain alive, in agony.
Agony that will continue for days,
weeks, months and years.
This is what it feels like when your child dies.
This is how I felt when my son Dale died,
age two years and one day.
To hold the limp body of my precious child in my arms
and feel its emptiness was pain that defies words.
I sat cradling my beautiful child, knowing that I
would never again see his smile,
hear his laugh
or feel his hand clinging to mine.
I would never again hold his warm body close and
breathe in the scent of his hair. I would never
know the person he would have grown up to be.
I walked from the room knowing that I had seen
and held my child for the last time ever.
I wondered why I still lived,
and how I was supposed to keep going.
I wanted to die; I wasn't suicidal - it's just that
the only way to end my pain was death,
and I ached to hold him in my arms again.
Never again will I feel 'whole'.
My whole future is flavored by the loss of my son.
A part of me went with him,
and a gaping hole exists that his warm
presence once filled.
I asked questions that no one could answer;
Why did he die?
Why not me instead?
Death has struck close to me once -
what if it happens again?
What do I do now?
How will I manage?
Why am I still here?
I rode an emotional roller coaster.
One moment I felt I was managing well -
the next I was curled up in a corner
pleading with God to take me, right now.
I went for long periods where I did well and thought,
"Okay, I've accepted it."
Then out of the blue, it hit me anew -
"He's dead. God, he's really dead."
And I began a new round of grieving.
Gradually, I found that the lows
weren't quite as low as the previous ones,
and that I rose from them quicker.
Then just when I thought I was cruising on a level piece of track,
it dropped out from under me yet again.
I did this over and over and over,
but living with it gradually became easier,
and I even found that I could live a 'normal' life again,
although it was a new normality.
I will never forget Dale.
He will live forever in my heart
and in my memories.
Death makes him no less a part of our family.
Living with the fact that my child has died
does not mean forgetting.
It means knowing and accepting that he is gone,
but still holding close those precious memories.
It means that my love for him does not change,
but that I don't allow my grief for his death
to over-rule my life forever.
It's about remembering that Dale would not expect
nor want me to spend the rest of my life
in misery.
My new normality is not necessarily an unhappy one.
Dale's life and death is part of what makes me who I am.
It has had an immense impact on the way I look at life,
and although I wish he was still here,
I know that I have grown from my experience.
Dale's official date of death is the 2nd of January, 1995,
the day he was taken off life support,
but I tend to think of the real date of his death
as the 31st of December, 1994,
the day he drowned.
Even though his heart had been started again,
he was gone.
As I write this, it's the 30th of December, 1998;
Dale's 6th birthday.
I wonder what he would look like now,
and imagine him playing with his brothers,
even as I sit here writing about his death.
We tend to celebrate his birthday rather than his death-day.
To us it's more important that he was born than that he died.
We choose to celebrate his life,
not his death.
It means more to us
that he was here
than that he left.
Remember?
Always.
Love?
Eternally.
Forget?
Never

Losing a piece of me is a poem that speaks very loudly to me. I relate to the pain this mother is expressing, however, for those of you who have managed this long journey with me most likely know the two words that set me off in this poem. If you guessed, "new normality," then you get a gold star. There is something about that terminology that rubs me the wrong way. I did not care to hear it when Mattie was first diagnosed, and I certainly do not care to accept it now that Mattie is gone. If you look up the word normality in the dictionary, you will see that it means specifically: conforming to the standard or the common type; usual; not abnormal; regular; natural. Keeping that in mind, you can clearly deduce that there is NOTHING normal or natural about a child developing cancer and/or dying. You will find no example of either of these issues next to the word normal in the dictionary. Therefore to tell me to psychologically accept cancer and Mattie's death as my "new" normal is beyond absurd, it is insensitive. Clearly this terminology doesn't incense other parents in the same manner as it does me, but you can rest assure that I will NEVER be using this phrase when working on behalf of the Foundation to help children and their families through their cancer journey.

Despite waking up and feeling extremely fatigued, I decided that I was going to get up and out of bed today, and go visit Ann and her mom, Mary. Before meeting up with Mary, I went to Ann's house to check on her garden. I was worried about my green friends while I had been sick this week and unable to care for them. While I was outside weeding, I met up with Ann's neighbor, Tina who was walking her dog. Tina introduced me to Max, her labradoodle. Max and I got along splendidly and Tina tells me that Max doesn't relate to everyone. Pretty soon, other dogs in the neighborhood came in to join in our social circle. It was actually funny for me to see the beauty of living in the suburbs, where people stop to chat and connect. A thing that rarely happens in the city, or at least in my area.

While shopping with Ann and Mary, I saw my friend, Denise by happenstance in the store. Today was a day about connections. Though Denise and Mary never met before, Denise was very familiar with Mary, since she is an avid blog reader. In a way, the blog has established a virtual "Mattie" community.

Ann took Mary out to lunch and in the process also invited several other friends along. This was actually wonderful stimulation for Mary to hear all of us talking and interacting with each other. Mary has known many of Ann's friends for years, so in a way it was nice for Mary to hear how these women and their children are doing. While at lunch I chatted with Tanja and Tina. Tina and I were sharing stories about making preserves and jarring them. I learned to do this by watching Peter's mom, who can transform just about any fruit into a tasty jam or preserve. So Tina and I traded stories and had the opportunity to learn more about each other. Tanja was telling us about her pet bird, Ginny. Mattie happened to love Ginny. Tanja then went on to tell me that she still collects Ginny's feathers. I looked at her for an explanation, and she reminded me that Mattie loved Ginny's feathers and in honor of him she still collects his feathers in a ziploc bag. Maybe because I haven't been feeling well, or maybe because I was struck by how Tanja remembered this, I started to cry. Tanja is used to my crying, but I observed the other women around me not knowing how to react. Mary, from across the table, also observed me crying, and not much had to be said. I could see she got it. Mary spoke to me alone at various points today. She asked me if I thought it was possible to wake up in the morning and already know that it is going to be a bad day? When she says 'bad,' she means that her feelings about her son's death will be overwhelming. I told Mary I understood and I definitely had and have many of those days. Toward the end of the visit, she also told me that she doesn't think that she and I can ever truly be happy again. That may sound depressing to an outsider to hear, but for those of us in the inner circle (of having lost a son; a circle none of us every wanted to add to our resumes), this sentiment is real and very understandable.

Later in the day, I went with Ann to pick up her youngest daughter, Abigail at camp. Abigail was enrolled in a nature camp near her home, and I had the opportunity to walk through parts of this lovely preserve. Abigail was very excited to show her mother what she made in camp throughout the week, and even walked us into the woods to show us the fort that she and her group build on their own. While waiting for Abigail to pack up her things, I observed all the children running around and the parents admiring what their children created. In a way, it is in those moments that I feel as if I am in slow motion. As if the world is functioning around me, and yet I am seeing things in snapshots and still pictures. In a way, I have been removed from this parent world, and when I try to walk into it, internally it feels awkward and uneasy. I had parents try to talk to me today about my child in the camp, I had counselors asking me which child was mine, and I answered politely, but thought..... wow if you only knew my real story. On the way back to the car, Abigail told me that she thought Mattie would have really loved this camp. She is most likely correct!

In fact, I know that Ann really wanted Mattie to attempt this camp in the summer of 2009. Or at least this was her thinking before we learned that the cancer took over his body. The beauty of Ann throughout this process was she was a ray of hope for us. Peter and I couldn't think about the summer or the future, but Ann could. She would always have me envision Mattie's high school graduation and prom. In the beginning I tried to go there, but in the course of the battle, I realized my mindset changed. In fact, my thoughts were quite accurately reflected in a passage from the book, My Sister's Keeper. In the book, the girl with leukemia is named Kate. This is what Kate's mother says, "When Kate was born, I used to imagine how beautiful she would be on her wedding day. Then she was diagnosed with APL, and instead, I'd imagine her walking across a stage to get her high school diploma. When she relapsed, all this went out the window: I pictured her making it to her fifth birthday party. Nowadays, I don't have expectations, and this way she beats them all." With Mattie's cancer, I too learned to have no expectations. That way, each crushing blow that was dealt to us during his battle did not cause additional heartache. I see that my thinking is probably in line with other mothers whose children have cancer. With that said, I did not belittle what Ann or others were telling me. I too wanted to have hope, but I learned that sometimes hope is not enough. Just living in the moment of fighting the battle that present day was all I could do.

Peter and I went out to dinner tonight, and we shared stories about our day and how we are feeling about this upcoming weekend. Peter and I visit our neighborhood restaurant often so we are familiar with the owners and everyone who works in the restaurant. Peter and I had a fascinating dialogue with one of the women who works at the restaurant. I don't care to discuss the specifics of the content, but needless to say, she got me thinking about a lot of things.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I grew up with Little House on the Prairie so I understand about becoming involved in the lives of the characters in the stories. I remember the storyline when Mary became blind and how it all worked out. I tried to imagine my life had that happened to me and I am sure I would not have dealt with it as well as she did. I am so dependent on what I see that it is very difficult to imagine how I would cope with life without sight. It was her existential crisis and she found her way to eventually becoming a wife and teacher of others who were also blind. It was not the life she imagined for herself but it was a life that had meaning for her and for others. I believe that is the only way to come through an existential crisis. My grandfather lost all of his family in the concentration camps. He had to find a way to continue on with his life and make meaning of it. I read a lot of Holocaust literature but I never found any answers there until I stumbled on some of Victor Frankl's quotes in other people's writings. Frankl concludes that the meaning of life is found in every moment of living; life never ceases to have meaning, even in suffering and death. "We can discover this meaning in life in three different ways: (1) by creating a work or doing a deed; (2) by experiencing something or encountering someone; and (3) by the attitude we take toward unavoidable suffering." You have to have faith that there is a future and that the future does hold meaningful work/events/relationships for both you and Peter. You have the inner spirit to do this; it is something akin to an internal "quest" to find what will bring you emotional satisfaction. As I practice today I will send you the energy to help you regain your health and continue your search. I hold you gently in my thoughts."

Thursday, July 1, 2010

Thursday, July 1, 2010

Tonight's picture was taken in July of 2003. Mattie was a year old. This was Mattie's first trip to the Outer Banks of NC. Peter and I loved going to the Outer Banks and we wanted to introduce the beach to Mattie early on. In true Mattie style, he did not like the beach for the first two years we visited it. However, by the third year, he began to love playing in the sand and the sound of the water crashing on the shore no longer scared him. Mattie had a strong personality, and I learned early on that persistence was the key to parenting him. I am happy that we persisted, because Mattie learned to love the water, building in the sand, and collecting seashells. All things that in my mind should be a part of a child's life. I still have many of his wonderful collections, and recently when I went with Ann to visit Charlotte's family by the beach, I brought home a huge pine cone. I am sure they all thought it was odd, because I did not explain why I was dragging this pine cone home. But the reasoning is plain and simple. The pine cone was something that Mattie would have honed in on and collected, and therefore, I collected it in memory of him and our trips together.

Poem of the day: Time Does Not Heal by Charlie Brown

Time does not heal
All wounds
It puts a lid
That sits lightly
On swallowed feelings
Of overwhelming grief
Sometimes that container
Has room for tears
And sometimes it is full
With hard, knotted anger
That cannot be voiced.
My heart holds both more
And less,
Than I thought possible.

Charlie's poem today sums it up beautifully. Or at least the analogy worked for me. Time is like a jar or a bottle. In this bottle sits my grief, my fears, my anger, and most of my emotions. Some days, the lid on the jar can open a bit to allow more feelings and thoughts inside. However, on most days in order to function the jar remains sealed. Lately, since I have been home feeling ill, I have found that it is harder to keep the jar sealed, and therefore, moments of intense sadness and bouts of crying slip out.

I woke up this morning with a fever and a cough. Because I was concerned that my recovery was slow and that we are moving into the July 4th weekend, I decided I better make an appointment at my doctor's office. Ann checked in with me, and she wanted Tanja to drive me to the doctor, but I decided to drive myself. It is funny, since Mattie developed cancer, I have much more strength to do things I never thought I could do before. While I was getting ready this morning, I was listening to the radio. The radio announcer was talking about the new George Strait song, and she told her audience that when we hear it, we should have tissues with us. I couldn't understand exactly what she was talking about, so I looked up the song she was referring to. I attached the link below in case you wanted to hear the song. The title of the song is, The Breath You Take. In the chorus of the song, is the line, "Life’s not the breaths you take, But the moments that take your breath away." I found this song very meaningful because it talks about the true purpose and mission in our lives. It is NOT the minutia, but instead the moments that capture our hearts and minds. For Peter and I what took our breaths away has now disappeared from our lives. So in a way Mattie's death leaves us with an existential crisis. What is the point our lives now?

George Strait's........ The Breath You Take
http://www.youtube.com/watch?v=VS5X2V5s58A

Visiting the doctor was an uneventful but tiring trip. She did not like the look of my throat, and therefore did a strep culture, which came out negative. So she deduced that I must have the flu. Apparently there is a strain of flu going around this summer, and I am the lucky one to catch it. She seems to think I will be feeling better by Sunday at the latest. I have two days of antibiotics to still take, but one thing is for sure, my head is heavy, I can barely keep my eyes open, and I have absolutely no energy at all.

This afternoon, as I have done for the past two days, I tuned into Little House on the Prairie. Today's episode just happened to be the one Karen and Peter told me about yesterday, when the eldest daughter in the family who is 15 years of age, becomes blind. For two hours I was glued to this show. I watched the parents deal with hearing this news about their daughter, Mary. I observed how Mary dealt with this news about her eyes and her future, and then had the opportunity to see how through education Mary was retrained to read and appreciate her life. It was a very heart warming and at the same time emotionally laden story. I went through seven tissues while watching this show, and had a royal headache after it was over. In one of the episodes, the father of Mary goes to church and his priest starts to talk with him. The priest says that God hears all our prayers, though our prayers are not always answered in the way we want. But that God has a reason for everything that happens. Clearly in this episode the purpose of Mary becoming blind was so that she would go to school and then help other children who are blind learn these same skills and function independently. Naturally this was a Hollywood moment, because in real life, the true lesson that God has in store for us isn't always clear, or at least not revealed SO quickly. I have no idea why Mattie was taken from Peter and I, and right now even if that secret was revealed, I am not sure I would care to or be open to hearing it.

Today was a day full of crying, as it related to my own feelings and those I observed. Karen asked me through e-mail why I torture myself in this way by watching such sad stories. The answer is, I am not sure. But I find it fascinating that I have never watched this show growing up, but now I tune into it, and it highlights all the issues I am contending with. It seems too coincidental for me. Based on all the crying I was doing today, Ann text messaged me and told me she was going to come over to deliver me more tissue boxes. It was the way she said it that made me laugh!

When Peter got home from work today, he made us dinner and we ate outside on the deck. We chatted about his day. He knew all about my day already, since I updated him periodically. I am happy Peter has a three day weekend, however, like any holiday, the fourth of July is also problematic for us. Actually any holiday without Mattie is hard. For many years we celebrated the fourth of July on the beach in North Carolina. Mattie loved all the excitement of seeing fireworks over the water. In certain years when we weren't in North Carolina, we celebrated the holiday in DC. One of the beauties of living in the city is right in our backyard we can see the amazing DC fireworks on the Mall. Mattie loved this fact, and this year as we will be home, I can't decide what we will be doing. The fireworks and festivities no longer have the same meaning for me.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read what Nancy wrote about being ill from doing something for yourself. It reminded me of what one of the instructors said about squeezing toxins and stress out of the body when practicing. They have to go somewhere and so I presume they circulate in the body, and make one ill until your immune system (and perhaps medications) help remove them. It likely is the same with the massage. The stress and the grief sit in places within until you work them out and in their departure, they come to make one ill before they are banished (for a time). It is terribly uncomfortable but holding it all in, is more destructive in the long run. I really appreciated Nancy's poem as well; there are no answers to "why" but we all know you did everything you could and your head knows that too, even if your heart can't admit that. Animals are more sensitive than we like to admit and Patches clearly knows when you need her care. As I practice today I will continue to send you healing energy for both your heart and your body. I hold you gently in my thoughts."

Wednesday, June 30, 2010

Wednesday, June 30, 2010

Tonight's picture was taken in December of 2006, at Flamingo Gardens in Davie, FL. We spent New Year's with my parents in Florida that year. It was the end of our trip, and on the day pictured in this photo we were scheduled to return to DC. However, before we went to the airport, we squeezed in one more activity into the day. A visit to Flamingo Gardens. At the time this really seemed like an over programmed schedule, but looking back, all I can say is I am happy we did it. Mattie loved Flamingo Gardens, as do I, and sometimes you really do have to live your day like this is the last day you are going to have. Nothing is guaranteed and I look back at this trip with no regrets.

Poem of the day: TIME DOES NOT BRING RELIEF by Edna St Vincent Millay


Time does not bring relief; you all have lied
Who told me time would ease me of my pain!
I miss him in the weeping of the rain;
I want him at the shrinking of the tide;
The old snows melt from every mountain-side,
And last year's leaves are smoke in every lane;
But last year's bitter loving must remain
Heaped on my heart, and my old thoughts abide.
There are a hundred places where I fear
To go - so with his memory they brim.
And entering with relief some quiet place
Where never fell his foot or shone his face
I say, 'There is no memory of him here!'
And so stand stricken, so remembering him.

The poem, Time does not bring relief, is quite accurate. In fact, with time the feelings associated with loss and grief, especially of a child, become more intense and complicated. Therefore, my one main message to others is NEVER to use the cliché.... time heals all wounds. Time may change how the wounds feel, but the wounds will ALWAYS be there. To be honest though the memory of Mattie will always be with me, and the fact that he developed an aggressive and horrific form of cancer and then died, have been etched in my mind and heart. Therefore, unless I become impaired, my memory, these wounds, and our experience with cancer will always be a part of me. In a way the cliché time heals all wounds, is equivalent to asking someone to forget that they went to school, college, or graduate school. It just isn't possible. You build upon your education in life. With an education, you look at facts, figures, and problems differently. You have the skills to think them through and to process how best to develop solutions. Similarly, cancer has caused me to evaluate the world, people, and problems very differently. This is not something that will go away with time, instead it is a part of my life, just like my education, that I will need to somehow accept in order to continue living.

I had a rough night with 102 degree fevers. I finally did fall asleep, but I woke up feeling wiped out this morning. So I spent another day at home and in bed. I am unable to read because my head simply hurts and my eyes are blurry. Writing this blog is also challenging! So I spent another day listening to the television. I exchanged e-mails back and forth with my lifetime friend, Karen. When Karen and I were in 6th grade together, every friday night, we would watch Julia Child's cooking show. Karen was at her home and I was at mine, so we would be having lengthy chats on the phone about Julia. Julia Child was considered a great chef, but we weren't watching her for that skill, we watched her because she actually was funny. The way she talked to herself while cooking, and how she would drop pots and pans all around her, were simply entertaining to a 12 year old! The reason this triggered this memory today was Karen e-mailed me to let me know that Julia's episodes are airing in the afternoons on the Cooking Channel. That gave me a chuckle. Though I grew up in the age of the TV show, Little House on the Prairie, I must confess I never watched it. While watching the Hallmark channel today, I tuned into this show, which as many of you know is about the life and adventures of the Ingalls family in the 19th century American West. The moral messages in the show caught my attention, and therefore, for the past two days I have made up on lost time, and watched many episodes. In a way this show brought me back in time. A time when there was quality television, when there were wholesome shows for children to watch, in which parents were respected, listened to, and valued. Where children were more innocent and the lessons of hard work, community, and family were appreciated. I find it ironic that today's episode was about pregnancy. The mom in the family became pregnant with their fifth child. I learned that their fourth child, their only boy, died after being a year old. So the mother was desperately hoping that the fifth child she was carrying was a boy. No one around her seemed to understand her deep level of grief for her son, but I got it immediately, and I also understood why it was hard for her to be around her friend who just gave birth to a baby boy. I was captured by the content in the show, because though it was produced in the 1970s, I related to it very deeply in 2010. In my emails to Karen today, we talked about and forth about Little House on the Prairie. Karen was quite familiar with it and told me about the various stages the show went through over its ten years on the air.

Throughout the day, Ann text messaged me and called me periodically. I got the feeling she was concerned since it is unusual for a adult to get such high fevers. She told me that even Mary, her mom, is worried about me. Ann is taking her mom out to lunch this week, and is waiting for me to get better, because Mary has requested my presence at this lunch. In part, I think Ann tells me these things to give me a reason to get better and motivated to get out of bed. When Mary's helpers know that we are taking her out to lunch, several of them want to come along. Why? My gut feeling is they get a kick out of watching us all interact with each other. Ann and I alone can be a riot, then add Mary to the equation, and we are better than reality TV. So hopefully I will be better by tomorrow or friday to go out.
 
While I was in bed today a very rare occurrence happened. Patches, our calico cat, jumped on the bed and sat and slept right on my lap. Patches is not an affectionate cat, and certainly not loving with me. I am the utility player in this relationship. Nonetheless, over the years, when I have been sick, and Peter isn't home, she remains close to me. I will never forget the time I was in graduate school (pre-Mattie), and Peter was at work. I developed an 104 degree fever and was basically delirious. Patches stayed with me on the bed until Peter came home. Not that she could do anything for me, but she made me feel as if I was not alone. I never forgot that moment, and from that day forward I nicknamed her, "nurse Patch." So nurse Patch was on duty today and spent several hours with me. When Mattie came into my life, Patches stopped tending to me in this way, because Mattie filled that role. But Patches knows that Mattie is missing from our lives now, and I found it fascinating how she reverted back to her old behavior today. Mattie would have been proud of her. 

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry you were ill yesterday and I hope that you are feeling better today. I know that you were overwhelmed several times this weekend and grief brings with it an assault on the immune system and often results in illness. I am glad that you have Dr Bob to turn to for assistance so that you are not stuck in some waiting room hanging about until you can be seen. As I practice today I will send you healing energy so that you feel better soon. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "We got home today from our trip. After taking care of laundry, paying bills, doing some other chores, and wrapping up some loose ends, some stay unwrapped for another day. I wanted to check the blog. We returned too late last night to write, so here I am today. I know I missed most of the week, yet, the last two days bring much to comment on. I am glad, too, that Junko got you to go out and do something just for yourself. Your massage must have really stirred energy in your body as you awoke ill yesterday. Seems a paradox, to spend this wonderful time with Junko and doing something just for you, and then become ill. Yet, it had to happen to send this wake up call that you need to stay healthy even though you feel that Mattie wasn't able to get better. Grief is so strange. It does come on us when we least expect it. We believe that we have a shield to keep it away and it is stronger. Rest well. Thanks to Dr. Bob for being available as always! I hope today finds you feeling stronger. Charlie's poem was beautiful and so telling of what you experience every Tuesday. I know that you missed your dose of Mattie while laying in bed. These are the times when it is hardest to stay away from the pain."

WHY ME? by Nancy Heller Moskowitz

I often asked, Why me?
Why do I sit here without my child,
Not being able to hold him, to make it all better.
Why me? Could there be another way?
In my head, I know I did all I could,
My heart says that's still not enough.
Why me? I ask and no one has an answer
An answer that will satisfy this feeling.
I wait and wait, hoping for some relief.
It comes in drips, like a leaky faucet.
I am comforted that many understand,
I wait for an answer,
Not knowing when or whether it will come,
No one knows why it was me!

Tuesday, June 29, 2010

Tuesday, June 29, 2010 -- Mattie died 41 weeks ago today.

Tonight's picture was taken in March of 2005, at Butler's Orchard in Maryland. Mattie was almost three years old in this picture. We took him to the Orchard in celebration of Easter, and to attend their "Bunnyland" day. Mattie instantaneously gravitated to the John Deere ride on tractors. At that time in his life, anything with wheels was appealing.


Poem of the day: Tuesdays by Charlie Brown

Another Tuesday comes
And it will go
And another will arrive
Like an endless series of waves
Upon the beach
And time will erode the grief
But also fade the memories
Until they are as gently softened
As the photos in my mother's album
I want the magic that will
Keep them fresh
While dulling the grief
That makes them hurt
Tuesdays mark another week gone.


It is indeed another Tuesday. A Tuesday which marks the 41st week of Mattie's death. I woke up today not feeling well at all. I am running an 101 fever, have a sore throat, congestion, a cough, and clogged ears. My throat is so sore, that I can barely swallow. I attempted to get up, but it was a futile process, so I remained in bed the whole day. My eyes hurt and therefore I couldn't even read. I just listened to the TV all day long.

While in bed, I could see pictures of Mattie on my desk staring back at me. I think when you are not feeling well, you are more vulnerable to emotions. So periodically today I landed up crying as well. Tuesdays are naturally hard days for me and compounding it with feeling ill, made for a very challenging day.

I recalled that in the past when I wasn't feeling well, Mattie would run in and check on me. He always wanted to give me hugs and snuggle close, because to him that was the best medicine he could offer. I missed that "medicine" today and reflected back on how it felt to have him near me.

In the midst of not feeling well, I received e-mails from my friend Junko, and text messages throughout the day from Ann. By around 3 or 4pm, I decided I most likely wasn't going to get better without antibiotics. So I text messaged Dr. Bob. As my readers know Bob was Mattie's amazing surgeon, however, since Mattie's death, Bob has become my first line of defense in the medical world. I told Bob my symptoms and in minutes he prescribed something for me. I am so grateful to be able to turn to Bob, because in all reality I had no energy to make it to my doctor's office.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am so glad you took some time out for yourself and that Junko was able to help you do that. I was captured by your discussion of the massage and the therapist's breathing technique. Part of mindful practice is paying attention to one's breath. To slow down and even out your respiration so that your inhalations and your exhalations are even and measured. It is amazing what concentrating on that does for your focus and level of awareness. The body responds to this calming focus and then the mind comes along with it. It takes practice but it is a wonderful skill to learn. I am glad Peter is in a position to be able to allow you to take this time off. A sabbatical from work is a good way to take time to evaluate and find a new focus for your energy. I hope as you are working through all the things that battling cancer has loaded in your "backpack" you find meaningful things to do going forward. As I practice today, I send you my energy to help you continue to sort through all that you are carrying along with you. I hold you gently in my thoughts."

Monday, June 28, 2010

Monday, June 28, 2010

Tonight's picture was taken in November of 2002. Mattie was 7 months old. Ironically I captured Mattie in a carrier, however, I assure you this was a RARE occurrence. Mattie did not like to be immobilized in any way, and really disliked this carrier, his stroller, and his infant swing. We learned early on that Mattie preferred having his feet touch the ground! I remember buying Mattie this puppy dog hat in the picture, and it was one of my favorite hats on him.



Poem of the day: An Ocean of Grief by Ferna Lary Mills

I cautiously watch the water as it moves along the shore
creeping closer to the sand around my feet.
Beyond the crashing waves, where the water is deepest green
the ocean mirrors the depths of my grief.
My grief is like the ocean, sorrow coming in like waves,
sometimes gentle like a ripple on the sea.
Other times it just engulfs me with crushing waves of sadness
and undertows of despair pull down on me.
Some days I wade out in it, splashing memories with my feet,
recalling days of sunshine on my face.
Stepping through the foamy edges never venturing out so far
that larger waves can threaten their embrace.
Then when I least expect it this freak of nature soaks me
in reality so painful that I fall.
The sorrow and the anger that I've fought with day to day
surge through me in a tidal free-for-all.
One day when I'm much stronger and my grief is not so new
I'll swim just like I used to do before.
I'll take pleasure in the memories,
and tread water in those places
that we can't share together anymore.

I had the wonderful opportunity to spend the day with my friend Junko. Junko is Kazu's mom, and many of my faithful blog readers know that Kazu and Mattie met during summer camp at their school. I do believe that some things happen for a reason. Mattie was destined to go to camp before his kindergarten year and meet Kazu, and likewise, in the process I was supposed to meet Kazu's parents.

Those of you who have been on this cancer journey with us for some time, know that Junko would visit me often while Mattie was in the hospital. She would bring me some of my favorite salads (and chocolate treats!) and also in the process give me a massage. I know the hospital staff seemed overjoyed when Junko was around, because they felt that getting me out of Mattie's room and providing me with some moments of relaxation were imperative.

Junko took me to a spa in Washington, DC today. Though she introduced me to this spa several months ago, I never had the opportunity to go with her. So this morning Junko picked me up at my home, and we spent about five hours together. I certainly have had massages before, but Junko walked me through the process of how to prepare to relax prior to having the massage. We landed up sitting in an eucalyptus steam room together. We chatted and breathed in the wonderful aroma, and then moved into a sauna room. It was SO hot in the sauna room, that I asked Junko to read the thermometer in the room. It read 168 degrees, at which point, we got up and walked out of the room since we felt as if we were going to get cooked in there.

I would say I have always had a hard time relaxing, but post-cancer, it is virtually impossible. My mind is always on. However, the massage therapist I met today was truly a gem. I told Junko that I never met a therapist who took deep breaths while giving a massage. I could easily hear her! As first when I heard her doing this, it caught my attention, but by the next breath she took, two things happened, first I felt that she was relaxed and in tune with her job, and second, I began to be in tune to relaxing and trying to take deep breaths myself. By the time Dorothy finished with me, you could visibly see I was relaxed. Too bad I can't take her and the spa home with me, because I think the art of relaxing and clearing one's head are very therapeutic.

After the massage, Junko suggested we sit back in the steam room. We sat, drank water, and continued chatting. Spending a morning at a spa in many ways can be a very intimate experience with a friend, because it is uninterrupted time, time spent talking, sitting, and even chatting side by side as we were blow drying our hair. I am not very good a slowing down at times, but Junko timed things so we weren't rushed and that we could just appreciate the experience. Which I did!

We had a wonderful lunch together at the Four Season's, and we talked about so many subjects. I have no idea why Mattie got cancer, and I have no idea why he had to die. But one thing Mattie's illness did do, was it connected me with people who have altered my life, and continue to support me in incredible ways. I naturally would prefer to have Mattie in my life and to not have experienced cancer, but what I am sure of is that cancer was a wake up call of grand proportion. As I said to Ann yesterday and Junko today, cancer has caused me to take a moratorium from life. I am very fortunate that Peter allows me this time to try to cope with Mattie's loss in any way I can, which means not working, and not meeting most of the other mundane responsibilities that we face on a day to day basis. By having this moratorium, I can actually chose who I want to spend time with, what I want to do with my time, and reflect on my life and our lives together. It is my hope that during this time of reflection it will help me regain strength to carry on.

When I got home, I saw Peter had left me a message. I could hear that he sounded quite sick, and since it was pouring out, I jumped into the car and picked him up at work. I tried to get him to rest this afternoon, but when you are not feeling well, it is easy to become restless and unable to sleep. Naturally my biggest fear with his cough and congestion is that this is something he picked up in his journey to Africa. So I am watching him closely.
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you got away for a little while even though you know as I do that you can't leave grief behind for long. I understand what you are saying about the ocean; I grew up near the ocean and would go and walk the beach when I had things to think through and even now the ocean has a major part when I do visualization/ meditation. I read what you said about the feel of the sand and the sight and sound of the waves but what brings it together for me is the smell of the salt water. I am pleased that you enjoyed your time and that you could acknowledge when you were overwhelmed and that you could find your own space. As I practice today I will send you my energy to help you continue your search for that space of serenity within that comes when you need it most. I hold you gently in my thoughts."

Sunday, June 27, 2010

Sunday, June 27, 2010

Tonight's picture was taken in January of 2009. Mattie was at his "girlfriend's" 7th birthday party. Charlotte made Mattie feel special on that day, and wanted him sitting right by her side. I was happy that Mattie was between treatments at that point, and could attend the party. I felt this picture was appropriate to post tonight, since I just got back from the beach, where I stayed with Charlotte and her family. Having these special moments with Mattie's friends is important to me, and Charlotte's mom, Ellen, and I had an opportunity to reconnect. Ellen and I met each other during the first week Mattie was in kindergarten and we became friends. Ironically, our children also met each other that first week in kindergarten class and immediately gravitated to each other.

Poem of the day: I Miss Your Laughter by Nicholas Gordon


I miss your laughter, fun, and gentleness.
I miss the things I used to do for you.
I miss the time, now filled with emptiness,
When each day was a stage for something new.
I miss your love, though mine for you remains,
A passion with no outlet to the sea,
A teardrop in a desert, that contains
What's left of my maternal ecstasy.
I miss your presence, like a silent chord
That anchored even solitude in grace.
I miss, for my love's labor, the reward
Of seeing some small pleasure in your face.
All these I miss, and yet they are all here
Within my heart, far more than I can bear.

I returned this evening from Bethany Beach, Delaware. I have wanted to visit Bethany Beach for years, but never had the opportunity. I am thankful to Charlotte's family and Ann for making this possible. We had a lovely day at the beach on Saturday, and it was fun to see all the kids connecting with each other and enjoying the beach and beautiful surroundings. Bethany is a quiet and family friendly beach and being only 3 hours away from Washington, DC makes this a very doable trip. Ellen and Jeff, Charlotte's parents, opened up their house to all of us and were wonderful and caring hosts. After spending several hours at the beach yesterday, we took the kids to a carnival at Rehoboth Beach, Delaware. Rehoboth has a very different feeling from Bethany. I went into the carnival with the kids for a short period of time, and then being around so many children and so much noise was simply overwhelming for me. So in those instances, I remove myself. I know that Ann and Ellen suggested I stay back at the house, but I really did want to see what Rehoboth looked like, since I have heard about it for years. While the kids were on the rides, I walked the boardwalk and sat on a bench and stared at the ocean. I have to believe that people who live by the water are simply healthier. If not physically than mentally. Hearing the waves, feeling the sand, seeing the birds, and watching the water and waves are so therapeutic. Though we were there for one night and two days, the image of the water will remain in my mind for some time.

On Saturday night, after dinner, we walked around their neighborhood and spotted several bunnies. That was a real treat. As it got darker, we took the kids back down to the beach with flashlights. They wanted to see the ghost crabs that come out at night by the shoreline (something Peter did with Mattie on numerous occasions in the Outer Banks, NC). I really do not like walking on the beach at night. It is simply eerie to me, and the water looks inky. However, there was a full moon out (my Mattie Moon), and with a death grip on Ann's arm, I managed through the process. Somehow among all of us on this adventure, we landed up hysterically laughing as we were looking for crabs. A moment in time, I will not forget anytime soon. We were quite successful and spotted many crabs, and watched them run back and forth from the water.

Today, I woke up early and sat outside, reading a book and sitting on a hammock. It was the quintessential feeling that told me I as at the beach. I then went for a walk with Ann on the beach, but since it was SO hot, we did not last very long in the hot sun. I am now reading, My Sister's Keeper. It is a book told from a teenager's perspective. But not an ordinary teen, she was conceived for the sole purpose to be a bone marrow donor for her sister who has leukemia. As I was reading the beginning of the book, the mother in the story describes how she learned her daughter had cancer. In all intensive purposes, it could have been me writing this chapter, because I related to it word for word. It captured the feelings and the numbness beautifully.

I want to thank many of you who wrote to me and let me know that you appreciated hearing Peter's perspective and insights last night. He is a wonderful writer, and though he remains silent from the blog, he too struggles with all the emotions, fears, struggles, and challenges I write about each day. I am just happy he had the opportunity to share his thoughts with you directly. I would like to share some photos with you from my trip to Bethany Beach.

Abigail, Charlotte, and Ann are burying Lexi and Katie in the sand!

The final product! From left to right: Charlotte, Lexi, Abigail, and Katie.

Our Bethany Girls.
From left to right: Abigail, Katie, Charlotte, and Lexi.

Ann snapped a picture of Abigail and I. Abigail and Charlotte were collecting rocks and sea shells. With each find, they could come and show me their prizes. I am not sure how this dynamic actually happened, but I enjoyed participating with both of them as they were having fun and sharing in the excitement of collecting!



I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Peter, thank you for the opportunity to "hear" your voice. I know it is really tough to do as I watch Vicki do it day after day with grace, love, sadness and sometimes humor. Thank you for acknowledging what a gift this blog is to all of us although it is a gift we would rather not have had to receive just as you and Vicki would rather not have given it. Vicki is truly a wonderful educator and you are the rock that she supports herself on. We all need the reminder that the "rock" too has feelings and grieves. As I do for Vicki each day, I send you the energy of my practice to help you; I hold you both gently in my thoughts."