In March of 2008, I took Mattie to California to visit my parents. While there we took Mattie to the Ronald Reagan Presidential Library in Simi Valley, California. Visiting presidential libraries are a very special treat, and I am happy that Mattie got to at least one in his lifetime. I snapped a picture of Mattie in front of a piece of the Berlin Wall that is memorialized at the Reagan Library. As many of you know in history, November 9, 2009 marked the 20th anniversary of the fall of the Berlin Wall and the advent of freedom and democracy in Eastern Europe as we know it today. Reagan was famous for saying, “General Secretary Gorbachev, if you seek peace, if you seek prosperity for the Soviet Union and Eastern Europe, if you seek liberalization: Come here to this gate! Mr. Gorbachev, open this gate! Mr. Gorbachev, tear down this wall!”
Somehow on the day that represents the 9th month of Mattie's passing, I felt that a picture of Mattie by the Berlin Wall was rather symbolic. Just as the tearing down of the wall represented a dismantling of power and steps toward freedom, by Mattie having cancer, battling cancer, and dying from cancer, he has torn down a huge wall within our community. The wall that we sometimes create in our minds, the wall that prevents and protects us from seeing, hearing, and understanding that thousands of children each year are diagnosed with cancer. A disease that affects the entire family. Mattie by this wall, represents in my mind, the catalyst for change.
Poem of the day: Reunited With You
Do not believe that I'm dead and gone
I want you to know that in spirit I live on
Never weep when you gaze at that one empty chair
Don't you know that quite often I come and sit there
I still know when you're ill
Or when you have a bad day
I am only a whisper or a heartbeat away
For I still walk where you walk
I still hold your hand
My footprints aren't there when you walk through the sand
But my voice can be heard in the sound of the sea
Or in a child's laughter when it's bounced on your knee
You can hear me when a cool breeze rustles through flowers
Or in the tree tops that bend with the first evening showers
I whisper to you in the still of the night
If you could but see me you would know I'm alright
So search with your eyes
You may glimpse me one day
As I stand there and watch little children at play
I'm the light in the window
I'm the snowflake that falls
I'm the shadow in the moonlight
I'm the nightbird that calls
My spirit lives on althought my earth time is done
I'm still part of the earth
I'm lit by the sun
So smile for me please
I don't want you to grieve
I'm well and I'm strong
I didn't really leave
When your time comes to go
The last thing you'll see
Is my smile as I whisper "You're coming to me"
For death isn't final
As you close your eyes
There's a light far more brighter than blue summer skies
I'll lead you towards it
Our loved ones are there
Laughing and strong
Free of all earthly care
I've been patiently waiting for you to pass through
For death simply means "Reunited with you"
Today was a busy day at Ann's house. For the first part of the day, I sat at Ann's kitchen table and did a puzzle with Abbie and Katharina. Mattie was an outstanding puzzler. In fact, he was only 7 years old, and could attack 500 piece puzzles without a problem. While I was struggling today to help the girls with their puzzle, I thought two things. First my skills were rusty, since I hadn't done a puzzle with Mattie for almost a year, and second, I thought if Mattie could see me today, he would have been laughing. Laughing because he would have had the puzzle done by the time I put together the border of the puzzle.
I had the chance to talk about summer camp with Katie and Katherina today. They showed me, with excitement, their camp schedules and even pictures of the cabins they will be staying in. It is entertaining to be around children who range in age from 8 to 12. Entertaining, because these are very different age groups and yet, somehow we have to find a way to make it work. Naturally a 12 year old is trying to test the limits and yet I find there is a fine line between allowing that to happen, and helping to empower this age group in the decision making process.
Katharina and I had several chances to chat with each other today while we were at Katie's softball game. Katharina was telling me that she thinks about Mattie all the time, especially when she cares for her pet bird, a bird Mattie was intrigued by. Katharina is an only child, as was Mattie, and as am I. Only children communicate with each other in a particular way. I can't quite describe it, but I can usually tell if someone is an only child. Katharina and I spoke about Mattie's things this afternoon. I am not sure how we got on this conversation, but I basically told Katharina in answer to her question that I haven't given away any of Mattie's toys, stuffed animals, and clothes. Now mind you she is only 10, but her response was fascinating. Her response was very empathetic, and she basically said, she could understand my decision and most likely would have done the same thing. I was very touched by her response because it was not only sensitive, but it was as if she was telling me she understood Mattie was important, and you can't just give his things away.
Tonight, Ann invited over Carolyn (our Walk Raffle Coordinator), and Mary (our Walk Publicity Coordinator) to her house for a chance for us to reconnect. I have gotten to know Carolyn and Mary quite well through Mattie's illness, and they have been extremely supportive and also helped enable the Walk to be a success. We had a nice time chatting and sharing stories. Sometimes being around moms can be difficult for me, however, Carolyn and Mary are very sensitive to my situation, which helps tremendously. I appreciate so many of you who have reached out to me today to let me know your support is present in my life while Peter and Ann go on travel. It means a great deal.
I received four messages today that I would like to share with you. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Just wanted you to know I was thinking of you both on this Tuesday and everyday."
The second message is from my friend, Charlie. Charlie wrote, "I can understand how difficult it must be to believe in a merciful, loving G-d when your loved one dies too young and in pain. In Judaism, it is permitted to question G-d, to rail and be angry at G-d, but what is not, is to walk away and ignore or deny him. We believe G-d can handle all the anger and all the pain in your heart. What happens in our world that is not positive is hard to understand and even harder to accept. My own position is that we (the human race) have free will to make decisions and therefore sometimes things may (will) happen that we don't like. Sometimes I think G-d must cry at the choices we make here on earth but I believe that he leaves us to sort it out because he's given us the gift of deciding our own path. I also believe at the end of our time in a physical realm our spirits will find a way to reconnect with those we love who have gone before. I am sure many people who read the blog will disagree with this and that's fine too, whatever carries one through the day and does not harm another is a good path to walk. One of the tasks of grieving is to find a way, a place to put or channel all the feelings including the anger and despair, into something creative or positive or that honors the person we lost. I respect your efforts to do that and I continue to send the energy of my practice to you to help you as you walk that most difficult path. I hold you gently in my thoughts."
The third message is from my friend and colleague, Nancy. Nancy wrote, "As this is Tuesday, I wanted to send you a message. I am proud of you for challenging old beliefs. Sometimes that is the only way that we grow. Children are not supposed to die before their parents and, yet, we know they do. You more than most know that this is true! I took in your words and feel your pain as time doesn't heal all wounds. We may learn how to cope differently with these terrible feelings. You show courage in getting up each day and dealing with all that you handle especially when all that you can handle is just getting up. That is a miracle when your heart is aching! As far as G-d works miracles in his own time and that Mattie is waiting in heaven for you and wishes you were here. First, I do believe that G-d tests us to see whether we have the strength to deal with his 'miracles'. Mattie's illness and eventual death is no miracle. It is painful, unfair, and enduring. What I do believe is true is that G-d's plan doesn't always fit our dreams and expectations. People don't either! I was rereading the Serenity Prayer this morning and writing about it in my journal. For your consideration:
God grant me the Serenity to accept the things I cannot change
To accept the things I can change
And the Wisdom to know the difference.
I agree with Rev. Sharon, G-d is strong enough to handle all that we ask of him, push him away when we doubt, and accept us when we ask for forgiveness and want his help. G-d asks us to believe in a greater power than man. Sometimes I think all we have is G-d. I know that you have difficulty with this and that's ok. Deep down, you need to be angry with someone or something and what better ideal than G-d. I believe this is the hardest piece of grieving, handling our anger at the things we can't control. Cancer is sometimes bigger than us and we are powerless. That is the hardest issue to accept, that we can't protect our child. It is the greatest challenge for a parent. All we can do is love them the best way possible and there you can have some peace as you did this supremely with Mattie. I know that the following week will be a challenge. I am only a phone call or email away. Please reach out if you need too. I am here for you. Please take care of yourself today and be kind to yourself as you are with others."
The fourth message is from Mattie's social worker, Denise. Denise checks in with us periodically and I was very touched by her comments today regarding Mattie. I am happy he is still on Denise's wall of fame in the Lombardi Clinic, and I do agree, Mattie was special and famous in his own right. Denise wrote, "I could not let this day go by without stopping in to say hello and checking in on you two. I enjoyed seeing you on the 24th and appreciate you all bringing Sean to the clinic. I think he had a powerful impact. Today, I am reminded that it is Tuesday, the 8th of June and 9 months since you lost your precious Mattie. I recognize that you all are still going through a difficult time and I want you to know the door is always open for you. On Sunday, my husband and I went to the Brooke Conservation Center and we saw an exhibit they have focusing on butterflies. I saw two cocoons and could not help, but think about Mattie and his interest in butterflies. Actually, I think of Mattie as a butterfly because he transformed the lives of so many people here at Georgetown. I once asked him for his autograph because I told him I had a place on my wall for people who I thought were going to be famous one day. I think he achieved that, certainly here at Georgetown and through the work of your foundation. You all continue to be in my prayers, I know it's a long road and not an easy one."
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