Tonight's picture was taken in August of 2003. Mattie was 16 months old. He was full of curiosity and what he is staring at was a box full of electric trains that one of my mentors gave me for Mattie. Mattie was fascinated by trains, and he could play for hours assembling, designing, and running trains on the tracks. I found this picture tonight in one of my files, and I particularly love the expression on Mattie's face. Sheer wonderment and surprise!
Poem of the day: Symbols of Hope by Charlie Brown
Butterflies and bows
Symbols of hope
I hang on to them
They help me cope
As I go through my day
Thinking of you
Wondering what
I am to do.
I try to be
Upbeat and kind
When tears overwhelm me
I try not to mind
Thank you to those
Who help me to see
That your thoughts are often
With Mattie and me.
As tonight's poem states, your thoughts and reflections to me are true symbols of hope. I admit that certain days are harder than others. Perhaps because today is a Tuesday, or the 43rd week that Mattie has been gone from our lives, I naturally become more reflective and sullen. Despite these feelings, I began my morning with several e-mails. The first e-mail I received was from Lesley, a friend of my sister-in-law's. Lesley lives in Boston, and my faithful readers may remember that I never met Lesley until the day of Mattie's celebration of life ceremony. She traveled down just for the day to personally meet me, since she is an avid blog reader. I learned about two weeks ago that Lesley's mom has cancer, a very aggressive form of cancer. In the midst of helping her mom through her first round of chemo this week, Lesley wrote to me. You will see her e-mail below. Needless to say what she wrote has remained in my thoughts throughout the day, because Lesley helped me to see that by sharing my stories and experiences, I am helping others. Not that anyone can be prepared for cancer and its treatment, but Lesley mentioned that she saw many of my frustrations unfold right before her eyes this week in the hospital. I think having knowledge about a medical system de-mystifies the process, and I am glad that Lesley feels that the blog was able to guide her in the cancer maze. Sometimes I need an e-mail like Lesley's to help me put things into perspective, because when grieving it is easy to drown in feelings, emotions, and thoughts. But my ultimate goal is to help others, and I think the best way to help others is to educate patients, their families, and the caring community. I asked Lesley if she would mind if I shared her story with you tonight, and her response was she was happy to because "it is truly a tribute to your openness." I take that as a high compliment, because cancer is a part of so many people's lives, and just like we would talk about our feelings and thoughts regarding our job, home, community, and volunteer positions, we should be able to be open about illness and its impact it has on us. Thank you Lesley for reminding me of this mission that I hold so dear.
The second e-mail I received today was from my friend and colleague, Nancy. You will see it below. In her e-mail, she includes Bray's, Traditions of Devonshire's fortune telling nursery rhyme, entitled, Monday's Child. Nancy wrote to acknowledge yet another Tuesday in my world, and according to this poem, Tuesday's child is full of grace. Ironically I went into labor on a Tuesday and Mattie died on a Tuesday. However, despite going into labor on a Tuesday, Mattie was technically born on a Thursday. Interestingly enough, the poem says, "Thursday's child has far to go." This line struck me today, because how much farther could Mattie have gone other than heaven?
The bright spot of my day was I met Margaret for lunch. Margaret was Mattie's first preschool teacher, and when Margaret and I met each other years ago, we instantly clicked, and have been friends ever since. Margaret always introduces me to either a new restaurant or experience. Today she introduced me to the french restaurant, Bastille in Old Town, Alexandria. We had a delightful lunch, and I can say three hours just flew by! Margaret told me about a Lego exhibit at the National Building Museum, which I would like to see, and we discussed other ideas regarding the Lego company which intrigued me. As I chatted with Margaret about my thoughts and feelings, she sat back and basically said, you have to write a book. Since Margaret is an avid reader, I took this as a high compliment. Before Margaret and I said our good-byes, she handed me a gift. The gift was a book entitled, "My life in France" by Julia Child. Margaret remembers my story of how Karen and I would watch Julia Child together when I was in 6th grade. So today's gift brought me back in time, and made me chuckle.
Tonight I received an e-mail from Jerry. Jerry was one of Mattie's favorite music volunteers at the Hospital. In his e-mail message, Jerry said that he wanted to thank Mattie for bringing us together. Jerry told me he was at Sunrise today, which was Mary's previous assisted living facility. Jerry remembered the time that we bumped into each other at Sunrise in the Fall of 2009. Jerry said in his mind he was hoping I was still there and he would bump into me today. He said it would be a better sighting that even seeing Scarlett O'Hara walk down the spiral staircase. That made me laugh, Jerry has a way with words! Jerry wants to know when I will join him singing again. He has invited me to sing at the hospital and at Sunrise. I told him I would think about it, since singing and music have always been important parts of my life.
Speaking of music, when I visited Mary today she was literally doing Karaoke. It was a riot. She was holding a microphone and singing. I could have used Jerry and Nancy today! Mary did a great job, and I helped her sing several songs. The last song we selected was Neil Diamond's Sweet Caroline. As I have learned over the years, every good and faithful Red Sox fan loves this song. Mary was very chatty today, and we talked about all sorts of things. When I left she reminded me that I am her angel, and that God sees all good deeds. I admire Mary's faith, despite it being tested in numerous ways.
My mom sent me a very moving story tonight entitled, A Day of Illumination. I told her that her story illustrates to me that cancer changes one's perspective. It forces you to think beyond yourself, to see the bigger meaning and picture in life, and in a way to care for your fellow man compassionately. I hope you find her story as moving as Peter and I did.
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A Day of Illumination by Virginia R. Sardi
Last week, I had occasion to go to the tailor to have some alterations made in a few things I had purchased. The tailor’s name is Felicia and I have known her for many years. She shares a common heritage with Mauro because she was born in Calabria and so was Mauro’s mother. Mauro likes to chat with her in Italian and loves those encounters because it gives him a chance to practice his linguistic heritage which is so rare since there are so few opportunities to do that here in Los Angeles.
Over the years, we learned that she had a grandson and when Mattie was born we would trade stories about how they were doing, monitoring and keeping each other updated on the latest events that we regarded as major milestones in their lives. When we lost Mattie, she was heartbroken for us and I sensed she could feel the pain we were living through because she had an only grandson of her own, as precious to her as Mattie was to us. She could relate because she could personalize our loss and because she is by nature a deeply empathetic lady. When I arrived at her place of business last week, she related a story to me that touched me deeply. She explained that I had just missed her last customer who left moments before I came and told me that she had picked up a dress that Felicia had altered for her. What was special about this customer, she went on to tell me, is that she is suffering from stage four cancer. Her cancer has invaded her pancreas, brain, and lungs. Her doctor told her this week that the deadly disease has spread to her bones. Her sadness was evident as she explained to Felicia that she would be wearing the dress on a brief vacation she was taking with her husband while she still could. Felicia being the ever sympathetic listener mentioned that she knew a family whose little boy had died of bone cancer. What is remarkable is what came next. The cancer stricken woman, despite the agony she is living in everyday bravely fighting to stay alive, told Felicia that she would gladly take on the pain of that little boy because no child should have to bear such suffering. I do not know this woman but I write in tribute to her caring spirit shining through in support of a child despite her own personal pain and misery, a child she did not even know. She as an adult could not bear the pain she was forced to live with but expressed a willingness to take on more, if only to spare a child the punishment of relentless pain. In this brief encounter with Felicia, I experienced an exhilarating moment of illumination about the greatness of human compassion under duress that makes me see how much better the world would be if more hearts could be opened to the hidden heartaches that haunt the gravely ill and their care-givers. Wherever she is, I will pray that she will be the recipient of a miracle of mercy but if that is not meant to be then, I pray that God will make her transition from this life as painless as possible when her time comes!
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I would like to end tonight's posting with four messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I have to confess I am behind on the blog...but I read several entries today and what I am always reminded of when I return is the cast of characters of your life. I think about your connection to them: Mattie. These relationships have grown and blossomed and bear fruit for you in the form of support, friendship, and new experiences. I witness how far you are reaching... to Lauren in Pennsylvania and her classmates, to friends of Mattie's, and to those whom you don't know and may never know. The impressions you have made and continue to make cast a wide net but are also deeply driven. Lives and entire thought processes are changing because of Mattie and the two of you. It may not always be clear but try to remember how you touch the lives of others and what a difference you are making. This Tuesday and everyday, I'm thinking of you."
The second message is from my friend, Charlie. Charlie wrote, "I don't often comment on the picture you post but I have to say I love this one of Mattie. I think it captures his spirit and zest for life at such an early age. I so appreciate (as you do) the gifts of your two young friends. Katharina's book is amazing and as we said yesterday, any memory of the beloved, given to a mourner is one of the greatest gifts one can receive. How special that she put them in writing for you to have as time passes. Lauren's efforts are so special as well; how wonderful to turn such an awful situation (a cancer diagnosis) into a good deed for someone else. I am so thankful that she has no evidence of disease and may the Blessed One keep her cancer free. As you said, she is the perfect example of how one person can make a difference. It was very kind of you to go to see Mary (Ann's mom) and I know by her reaction that she really appreciated your visit. When you don't have a job or some specific task to accomplish on a given day, the days can easily run together and you get disoriented. Add illness or other problems to that and it gets much worse. I know Mary is very happy to have you in her life. I will be thinking of Brandon today as he makes his jump. I hope it is all that he expects and that they do it safely. I hold you gently in my thoughts."
The third message is from my sister-in-law's friend, Lesley. Lesley wrote, "I just finished four days in the hospital and I thought of you so often. I know that this is the first of many hospital stays for me. I did not have to entertain my mother or find the strength to advocate for her because she still does a great job on her own and yet it was exhausting. While I was there I witnessed so many of the same frustrations you went through...the admissions process, making sure the care was accurate, and watching her anxiety rise as we entered evening. My mother is aware of you and she began to cry thinking of your pain and grief. She asked me a great question, " Why do you read the blog still?" I told her that you have impacted my parenting, perspective on life, and now I reflect on it often because it modeled how to be a caretaker. She wanted me to thank you because she said I did a good job and you taught me well. I thought I would pass along her gratitude."
The fourth message is from my friend and colleague, Nancy. Nancy wrote, Yesterday's blog was so rich in the goodness of children. It tells of the importance of listening carefully as children tell so much without the years of education and experience. Katharina and Lauren are two special examples of my brief survey. I am glad that Katharina is doing well and would not be surprised if she is able to walk without her crutches before the month is up. And Lauren, her Bows for Hope captured so much promise and how wonderful that she is disease free. As far as these two gifts for you, just another sign that you are doing the work that you are meant to be doing right now. We all wish that Mattie hadn't gotten sick and died. Yet, you have shared how much his life has impacted people far and wide and this is how he will be remembered: a beautiful sun, rays of hope, and glorious butterflies. What a legacy for a 7 year old! As I typed my subject for today, I was reminded of the nursery rhyme; Monday's Child. I looked on Wikipedia to get some information. It was published in England,1838, in A. E. Bray's, Traditions of Devonshire as a fortune telling nursery rhyme. As I don't know how to scan something, I'm enclosing it here:
Monday's Child
Monday's child is fair of face,
Tuesday's child is full of grace,
Wednesday's child is full of woe,
Thursday's child has far to go,
Friday's child is loving and giving,
Saturday's child works hard for a living,
But the child born on the Sabbath Day,
Is bonny and blithe and good and gay.
Tuesday's Child is full of grace, that is your Mattie.
Finally, years ago, when Susan began the Creativity Room at our AMHCA Conference, I created this quick poem. I thought is was finished, but, now I'm not so sure. What do you think?
WINGS
Released from the womb, a stub
If nurtured, inch by inch, maturing
Test after test, hellos and good byes
The ultimate test to try, to fly!
Only now as I reread it do I see that I was envisioning a butterfly, Mattie's symbol. I send you sweet thoughts on this Tuesday, the marker of another week.
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