Tonight's picture was taken last Mother's day in the PICU. Mattie worked with Jenny and Jessie (his art therapists) to create a beautiful vase out of clay. He used a pottery wheel and even glazed the vase himself. Then with Jenny and Jessie's help, Mattie created tissue paper flowers. This was his Mother's day surprise to me. This vase now sits in our dining room, and it will always remind me of Mother's Day in 2009. I simply did not know when I received this gift, that it would be the last Mother's day gift I would receive. To say that I miss Mattie each day, not only on Mother's Day would be a profound exaggeration.
Poem of the day: First Mother's Day by Charlie Brown
This is my first
Mother's Day without you,
How I am to survive it
I haven't a clue
I don't know how I'm
To get through the day
Mattie, oh Mattie
Why couldn't you stay?
Memories and pictures
Are all that is left,
Of a beautiful boy
My heart is bereft
It was eight months ago
Right to the day,
When your fight ended
And you went away.
No one to call me mom
Or to make me a card,
I think this day will be
Always much too hard.
The truth is without you
I am unable
To say that "mom" is
Any more than a label
Maybe some Mother's Day
Will again come to be
A day to celebrate
"Mommy and me"
But this Mother's Day
Is marked with my tears
Too painful to spend
With Mattie's friends and peers.
So all my friends
With children to hold
Be patient with me
And my story, now told.
Before I begin expressing my thoughts and feelings for the day, I want to thank many of you for contributing to the Foundation this weekend in honor of Mother's Day. Your thoughtfulness was greatly appreciated and felt. I also thank you for the e-mails you sent me today, they certainly helped make a very difficult day more tolerable. It is my hope that all the moms reading this posting tonight know just how important your role is in your child's life, and that it is my hope you never take for granted the gift of having a healthy child.
As Charlie's poem accurately reflects, a first Mother's Day without your child is deeply painful, and if I tried to explain the sense of isolation, loss, and despair I feel, I most likely would have a hard time, because I feel limited by the English language. There are just so many words in our vocabulary to describe grief and the feelings associated with it, but from my perspective they do not come close to honing in on the true depths of the day. In my usual state of feeling overwhelmed, I have retreated inward. I most certainly did not want to talk about my feelings or talk about anything else today. I felt paralyzed in thoughts and feelings.
Over the course of the last day or so, I have been e-mailing several other moms who lost their children to osteosarcoma. In fact, three other children died within a month of Mattie. I feel for these moms who are experiencing this level of pain, especially when this weekend was not only Mother's day but also an anniversary mark of their children's death. Many of you will have the opportunity to see the pictures of these beautiful children (Sammie, Emma, and Keaton) at our upcoming Walk. I feel that seeing the faces of these children is important. Their suffering has to serve some sort of purpose for us, and these children show us that pediatric cancer is very real, it doesn't discriminate, and it can take away lives and impact families forever.
I had the opportunity to read Sammie's mom's posting today on her blog. Chris wrote, My first Mother's Day without you reminds me that I have to learn to do this over and over again. Here is something I have learned... the calendar marches on no matter what I wish for." Chris is exactly right. It isn't the first Mother's Day that will be hard, it is every Mother's Day, and frankly just about every day. Grief can be all consuming, and the issue of losing a child is ever present. It is like an imaginery weight that you carry around with you. Some days, you may not focus upon it as much, but you know that it is there, and will never go away. Adjusting to living with this feeling requires a great deal of effort and patience, and some days I manage it better than others.
I am not sure what I was expecting would happen today. Perhaps a sign from Mattie, a feeling, something! Trust me I was looking, and I was feeling, but I did not feel connected to Mattie. I was absorbed instead in feelings of isolation, and saddened not to receive Mother's Day cards, and to feel the love that so many mothers may take for granted. I am very grateful that Margaret (Mattie's preschool teacher) sent me a beautiful butterfly card in the mail. It was very touching because she expressed her thoughts using some of the language that Mattie and I used with each other. Such as "you are my one and only" and that Mattie loves his "una moona." I read those lines, and started crying, because I remember saying these things like it were yesterday. Peter also gave me a card as well, and on the front of the card it said, "happy Mother's Day from both of us!" It meant a great deal to me that Peter helped to verbalize what Mattie most likely would have been saying to me.
Charlie sent me a link to a song today called, "Dear Mr. God." She encouraged me to watch the beginning part of the video closely. When I watched it at first, I did not understand completely what I was watching. So I played it again. This song is very powerful for anyone who has experienced cancer. Especially the cancer of a child. What the song captures is how children with cancer are special. They have a special force within them, a force that makes them wiser than their years, a force that makes them understand the incomprehensible, and a force that causes all of us to take notice, bond together, and in essence have a life changing experience. After I watched this video, I could tell this was based on a true story, so I did some digging and found out this song is the theme song of a new movie called, "Letters to Mr. God." Unfortunately this movie is only being played in certain parts of the Country. I included a synopsis to the movie below and a link to the video Charlie sent me as well as a trailer to the movie in case you want to hear what I was absorbed in this morning.
The story line of the movie: Letters to Mr. God
The story of what happens when one boy's walk of faith crosses paths with one man's search for meaning-the resulting transformational journey touches the lives of everyone around them. Tyler Doherty is an extraordinary eight-year-old boy. Surrounded by a loving family and community, and armed with the courage of his faith, he faces his daily battle against cancer with bravery and grace. To Tyler, God is a friend, a teacher and the ultimate pen pal-Tyler's prayers take the form of letters, which he composes and mails on a daily basis. The letters find their way into the hands of Brady McDaniels, a beleaguered postman standing at a crossroads in his life. At first, he is confused and conflicted over what to do with the letters. But the decision he ultimately makes becomes a testament to the quiet power of one boy's shining spirit and unshakable faith.
http://www.cmt.com/videos/the-warren-brothers/498880/dear-mr-god.jhtml
Trailer to the Movie:
http://www.youtube.com/watch?v=sGEfocWPeP4
A couple of months ago, I received an article in the mail from my colleague and friend, Denise. I found this column so meaningful that I kept Denise's letter, so that I could post "Mothers Who Have Lost a Child" today. I read this column again today, and I commend the late Erma Bombeck who had the where with all to understand that Mother's Day isn't always a happy occasion for all of us. For many of the moms out there who are reading this tonight who have lost a child, I am thinking of you and I hope you find some meaning in this article.
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Mothers Who Have Lost a Child - May 14, 1995 by Erma Bombeck
If you're looking for an answer this Mother's day on why God reclaimed your child, I don't know. I only know that thousands of mothers out there today desperately need an answer as to why they were permitted to go through the elation of carrying a child and then lose it to miscarriage, accident, violence, disease or drugs.
Motherhood isn't just a series of contractions, it's a state of mind. From the moment we know life is inside us, we feel a responsibility to protect and defend that human being. It's a promise we can't keep. We beat ourselves to death over that pledge. "If I hadn't worked through the eighth month." "If I had taken him to the doctor when he had a fever." "If I hadn't let him use the car that night." "If I hadn't been so naive. I'd have noticed he was on drugs."
The longer I live, the more convinced I become that surviving changes us. After the bitterness, the anger, the guilt, and the despair are tempered by time, we look at life differently.
While I was writing my book, I want to Grow Hair, I Want to Grow Up, I Want to Go to Boise, I talked with mothers who had lost a child to cancer. Every single one said death gave their lives new meaning and purpose. And who do you think prepared them for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reflect.
The children in the bombed-out nursery in Oklahoma City have touched more lives than they will ever know. Workers who had probably given their kids a mechanical pat on the head without thinking that morning are making calls home during the day to their children to say, "I love you."
This may seem like a strange Mother's Day column on a day when joy and life abound for the millions of mothers throughout the country. But it's also a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back.
In the face of adversity, we are not permitted to ask, "why me?" You can ask, but you won't get an answer. Maybe you are the instrument who is left behind to perpetuate the life that was lost and appreciate the time you had with it.
The late Gilda Radner summed it up well: "I wanted a perfect ending. Now I've learned the hard way that some poems don't rhyme and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious ambiguity."
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I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "Vicki, I know yesterday was a tough day and today is unlikely to be any easier. I am so glad that Peter is there, understands and works to pull you outside. The article I sent you about nature being a healing force is very true and I hope you spend some of today outside, enjoying the sun and perhaps even getting a message or two from Mattie. I agree with you that you were meant to meet the woman in the laundry room. The Turks coined the word Kismet to mean fate or destiny (apparently it came from an earlier Arabic word) but I do believe that some "meetings" of people were meant to be at a particular time and place. She had a message for you, one that many of us feel as well but sometimes we "hear" things better from a stranger since we believe that they don't have the same agenda as those who know and care about us. I can tell you that you have had a huge impact as a teacher on so many of us. You have left your mark on so many hearts and minds just as Peter's teacher did. I hope that you can find your way back to that someday, but if not, it will be because you have found your way to the next important mission you have ahead of you. As Susan so eloquently said, you are still a Mom, that hasn't changed, just that your grasp of it is bigger now. You hold the image for all those you help in your blog and in the foundation. As you go through today and deal with the difficulties of it, know that we are all thinking of you and Peter and Mattie and hoping you find those messages of love coming into your space. I hold you gently in my thoughts."
The second message if from my sister-in-law, Lisa. Lisa wrote, "My heart goes out to you all days, but maybe today most of all. We're thinking of you and hoping that today melts into tomorrow. Mattie was so lucky to have you, just as I know how lucky you were and are to have had him in your life. The definition of a mother remains vague and complicated and so painful, but you will forever be an extraordinary mother."
The third message is from a friend of my sister-in-law's. Lesley wrote, "As you enter a new first today, my thoughts are with you. I know you often wonder what the impact of the blog has been on your readers. I am sure that I am not alone in saying that you have given us all the courage to parent better, communicate more effectively, and put small challenges in perspective. These are all attribute you demonstrated to your readers throughout Mattie's courageous battle."
The fourth message is from my Boston College friend. Angie wrote, "I think about you every day but I know this is an especially difficult day for you. I wanted you to know that at church today I said special prayers in tribute to my mom and Tom's mom (who are no longer with us), and to you for being such a great mother. Yes, you will always be a mom!"
The fifth message is from my friend and colleague. Nancy wrote, "I've been reading the blog and it always sets the tone of my email message. As I lounge today, ( we shared family time last Sunday and yesterday, so I told Cindy and Hilary to enjoy their day). The truth is that since my Mom died, almost 2 years ago, Mother's Day has never felt that important. You see for me, every day that I spend with my children and grandchildren is Mother's Day! That's why I try to remind you that you are always Mattie's Mom and he is sending you Mother's Day wishes all the time. I know that Peter and you miss the touch of his hand, the questions he asked, the smiles, the frowns, and as a song says ' the ups, the downs.' Remember card creators told us this first Sunday in May is Mother's Day, not true for a Mom like you. A friend once told me that some relationships have a set time. I understand that this is hard to hear when you are missing Mattie as much as you are these last few days, yet, so much happened during his short life. So much is still going on and will continue to do so with the foundation and all of the connections that were begun for your family, two years ago. I agree with you that there was something spiritual about your meeting your neighbor in the laundry room. Another message from Mattie Moon! He wants you to be free in your endeavors to react as you do with compassion, empathy, and love. He knows that you are made to love many and work to make the world a loving place. I agree with Susan that once you are a Mom, no matter what happens, you always retain that title. I, also, believe that someday you will be able to give your love to another child/children. Children touch us in many venues and there are many who need attention and care. When I went to the cemetery this week, I passed a billboard, whose statement moves me every time I drive on that road. It said; The Greatest Job We Do is When We Stoop Down To Help A Child! You've done this for over 8 years with Mattie and will, one day, be free for another. I know it is chilly in DC today as it was in NY. I pray that Peter and you did something special and that you had a restful day. Today is a day to remember that you are a Mom!"
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