Tonight's picture was taken during Halloween week of 2008. Mattie was trick or treating at the Hospital, dressed in his mummy costume. Pictured with Mattie was one of his favorite volunteers, Sally the Story Lady. My mom and I LOVED Sally! Sally had a way of making a story come alive. She would have all of us participate in the story and act out a role. Mattie usually did not participate, but would get a kick out of watching me make a fool out of myself as I was playing a part. He enjoyed that immensely! Sally came to the Hospital each week, and each week she came dressed as a character from the story she was going to perform. Sally was a true talent and she saw potential in Mattie. She told me early on that she found Mattie to be very intelligent and creative. I remember one day, I took a break and went into the hallway. I left Mattie with Linda, Mattie's childlife specialist. When I came back in the room, I found Sally in there with all her students. Students who were studying acting under her tutelage. Needless to say, she had Mattie up, engaged, and I could tell Mattie was directing things, and the students seemed enthralled by the instructions he was giving them. It was a sight to see! I did take a picture of that scene and will try to track it down to show you one of these days!
Quote of the day: I'm loving you, I know you're there yet I'm not sure where you are. Are you sitting here beside me, or were you the bird that flew? I feel the wind blow in my ears, and I'm wondering if it's you. Are you reading over my shoulder? Are you holding my hand right now? I want to tell you I love you, I'm not sure if I know just how. I can feel you wiping my teardrops, and asking me, please, not to cry. But I'm missing you, loving you so much. And I'm wondering why you had to die. ~ Brandy Sively Portera
In line with the rest of the week, today began with a difficult start. The kind of start where I saw no reason to get up. I have days like this, and frankly it has been one of those weeks. As I continue to write the blog, I struggle with what to report to you each day. I could certainly sugar coat the day for you, and I found myself subconsciously doing that for the past couple of days. Until, I finally asked myself why I was doing that? Was I doing that to protect myself or because I thought that this is what my readers would want to hear? That things are improving and life is "moving on" for Peter and I! Of course, my faithful readers will know that even on a GOOD day, I would never use the terminology "moving on" to describe my current feelings or state. I despise that term, almost as much as the "new normal!"
Then out of the blue, I received an e-mail from someone I did not know last night. She contacted me professionally to ask me questions about graduate school. Typically when I respond to these inquiries, I make sure I take Mattie's blog website off the footer of my e-mail. However, yesterday, I must have accidentally forgotten to do this. So this student wrote back to me thanking me for the information I gave her about graduate programs, but the basis of her e-mail was to thank me for writing the blog. She apparently read quite a good portion of it, and wanted me to know that it was timely that she connected with me since yesterday was the seventh anniversary of her youngest brother's death. I was very touched by her e-mail and what she quickly surmised from reading the blog is that we have quite a community supporting us. I found this young woman's observations of our story simply fascinating, and I guess the conclusion I came to is that the majority of people who come to read the blog do this because of my honesty and openness. Therefore, sugar coating things and also not being genuine serves no purpose to you as the reader or to me as the writer trying to express my thoughts and feelings through this difficult lifelong journey of grief.
As is typical, I received a text message from Ann this morning, but I did not respond. However, she is persistent especially when she senses that I am not in a good place. So she finally called me. We talked about various things at first, and then she started to ask me what was going on with me. She knew I was still in bed and really had no prospect of getting up. I talked and cried and Ann listened. There are days where I struggle with my purpose and lack of direction. I struggle with the fact that things that once interested me, no longer do, and I struggle with missing Mattie. I also struggle with giving myself permission to continue living without Mattie and to find happiness. There is a great deal of guilt one experiences, especially a parent when you realize you were unable to save your child from such a horrific disease and death. So allowing oneself to feel joy and happiness produces guilt. As we continued on talking, it became clear that I had to start working on a goal, a goal that would help me capture Mattie's life and memory. That goal is to write a book. That is a daunting goal, even under the best of circumstances. I know others have urged me to consider this, but with me, writing has to be on my own terms and when I am ready. I have to develop a certain mindset to do this, and there are things I can begin to do to get there. My philosophy that worked when I wrote my dissertation, was that I would do something each day toward the writing and completion of this major research endeavor. Some days the something was big and other days it was small, but the point was to have it always in my consciousness! So I am trying to adopt this proven strategy for Mattie's book.
One of the things I began to do today was to read a book written by a mom whose son was also treated at Georgetown University Hospital. I find reading another mom's perspective is helpful for me, as I start brainstorming my own thoughts. The book is entitled, Saving Henry, by Laurie Strongin. Laurie started the Hope for Henry Foundation, which is the Foundation that donates Halloween costumes to children at local hospitals (in fact Mattie's mummy costume came from this Foundation!). Her Foundation does many wonderful things for seriously ill children, of which Mattie benefited from this generosity. I read the first four chapters of Laurie's book today, and as soon as I picked it up and read her acknowledgements, I began to cry. She wrote how Henry's diagnosis impacted her marriage, her life, and her future. As she elaborated on this, I found that I deeply related to what she was saying. We have two very different stories, and yet we share commonalities.
This evening, Peter and I went out to dinner with Nancy, my friend and colleague visiting from New York. We introduced Nancy to Mattie's favorite restaurant and chatted for many hours. Nancy lovingly created a beautiful scrapbook filled with all the poems she has written to us over the year since Mattie died. This is a very special and thoughtful gift, because I know this took time, love, and creativity to put together. Nancy has scrapbook pictures on each page of things Mattie would have loved, like bugs for example! The second gift Nancy gave us was a book entitled, Hug! Nancy collects things with hugs or things that show or discuss hugs (such as books, book markers, photos, etc.), and she shared one of her pieces from her hug collection with us. Within the Hug book, she wrote an inscription poem..............
For Mattie - The Power of a Hug by Nancy Heller Moskowitz
A hug warms the body.
Each of us seeks its solace.
Some come easily.
Others, a distant wish,
an inconvenience, a threat, no longer possible.
The hug between a parent and their child
Heaven.
Nancy got Peter and I to talk and elaborate on some of our feelings tonight. We had laughs and we also had tears. Since Mattie's death, I have many irrational beliefs, and as I was elaborating on two of them tonight, Nancy said that this alone should be a chapter in the book. Mainly because these are beliefs others who are grieving have in one way or another, and they have to be dispelled. For example, at times I blame myself for Mattie getting cancer. When I was pregnant with him I was working on my dissertation, and it was a highly stressful time in my life. I blame the stress for his illness. Naturally I know this serves no purpose nor is logical, however, parents of children with terminal illnesses struggle to find meaning and reasons for why things happen, and the natural person to blame is one's self. If you think this belief is over the top, I have many others. Needless to say, I am happy Peter had the chance to meet Nancy, and I am happy we had these moments to share our thoughts without the fear of being judged. As we completed dinner, we bumped into our friends Debbie and Peter at the restaurant. It is a small world, and I am finding that Mattie's favorite restaurant, is a favorite by many of our friends. Debbie is a daily blog reader, and she and her husband have been so incredibly supportive of us throughout this ordeal. Somehow seeing them at the end of the night was symbolic. It was symbolic of what Mattie left for us, an amazing community of loving people supporting us still.
I would like to end tonight's posting with a poem I received from my friend Charlie. She wished me "enough," and I most certainly wish this to all my readers.
I wish you enough...................
Recently I overheard a Father and daughter in their last moments together at the airport. They had announced the departure.
Standing near the security gate, they hugged and the Father said, 'I love you, and I wish you enough.'
The daughter replied, 'Dad, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Dad.'
They kissed and the daughter left. The Father walked over to the window where I was seated. Standing there I could see he wanted and needed to cry. I tried not to intrude on his privacy, but he welcomed me in by asking, 'Did you ever say good-bye to someone knowing it would be forever?'
'Yes, I have,' I replied. 'Forgive me for asking, but why is this a forever good-bye?'..
'I am old, and she lives so far away. I have challenges ahead and the reality is - the next trip back will be for my funeral,' he said.
'When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?'
He began to smile. 'That's a wish that has been handed down from other generations. My parents used to say it to everyone...' He paused a moment and looked up as if trying to remember it in detail, and he smiled even more. 'When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them.' Then turning toward me, he shared the following as if he were reciting it from memory.
I wish you enough sun to keep your attitude bright no matter how gray the day may appear.
I wish you enough rain to appreciate the sun even more.
I wish you enough happiness to keep your spirit alive and everlasting.
I wish you enough pain so that even the smallest of joys in life may appear bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough hellos to get you through the final good-bye.
He then began to cry and walked away.
They say it takes a minute to find a special person, an hour to appreciate them, a day to love them; but then an entire life to forget them.
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