Tuesday, March 2, 2010

Tuesday, March 2, 2010 -- Mattie died 25 weeks ago today.

Tonight's picture was taken in June 2007. Mattie had just completed preschool and was going to begin kindergarten in the Fall. We took Mattie to Dutch Wonderland (a theme park) in Pennsylvania for Memorial day 2007. This was Mattie's first roller coaster ride, and he was all smiles. It turns out Mattie LOVED roller coasters. The wilder the better. I will never forget this day at the theme park. I was nervous for Mattie about him riding a roller coaster, since I am deathly afraid of them, but Mattie was all about adventure. He rode the roller coaster at least five times that day. I also recall that I had an argument with a family who was waiting in line to ride the roller coaster. This family had three children, and one boy who was 12. This boy did not want to go on the roller coaster. He told him mom he did not like them, and he started to cry. He was afraid. Instead of his mom understanding this fear, she started screaming at him. She wanted to know what 12 year old boy was afraid of roller coasters! She was loud enough for all of us to hear her, and naturally the boy was only more mortified by her screaming. I couldn't take what I was hearing so I went over to the mother and tried to help her understand her son's perspective but instead she became hostile with me, until I called the park police. Needless to say, that boy did not go on the roller coaster that day.

Poem of the day: A Mother Remembers by Kim Hodne

At first, the fear of forgetting you
Consumed my thoughts
Now I know it’s not possible
For a mother to ever forget her child
Would the loss of you be all that’s left me?
Outweighing the joyful times
No longer a mother
Being there for you
But slowly the happy memories are stronger
With the passage of time
Flooding in images of you
At all different ages
I hear your voice, your laugh,
Feel your strong hug
See those smiling eyes
Woven into my heart like threads in a tapestry
Perhaps this is by design
The good memories start to fill in
That emptiness of my heart
Softening the edges of sadness
In dreams I see you somewhere close by
As if to reassure…I’m okay, mom
The fear is gone now and I know
You’ll forever be with me

It appears to be another Tuesday, which naturally means that Mattie has been gone from our lives yet another week. Twenty-five weeks to be exact. My mom sent me an e-mail today, and within the message was tonight's picture. I must have given her this picture years ago, and when I saw Mattie on the roller coaster it brought me back in time. It is hard to imagine that only three years ago Mattie rode his first roller coaster and was full of life and adventure. I would never have guessed Mattie was going to become so sick and die a short time later. I suppose when you are raising your children you don't think in these terms, mainly because our children are supposed to outlast us. But Mattie's death has been a reality check for me, and not necessarily a healthy one.

I received a beautiful e-mail today from Jocelyn. Many of my readers may remember Jocelyn. She was one of Mattie's close buddies at Georgetown, and is an osteosarcoma cancer survivor. Jocelyn is getting married and would like to use Mattie's wristbands as wedding favors. I was deeply touched, and of course will never forget Mattie's love for Jocelyn. She was an excellent role model for Mattie, and he saw that it was possible to live your life with Osteosarcoma and be happy. For all the times Jocelyn spent with Mattie and us, we are forever thankful. Which is why one of the presents we are giving Jocelyn is 90 wristbands for her wedding.

I spent a good part of today at Ann's house. One of her children was sick and I was happy to help out. I continue to be making progress on Foundation tasks, and Ann and I continued our dialogue about the March for a Miracle. One thing is quite clear, and that is we are grateful to our readers and supporters. It is through all of you that we are getting ideas for corporate sponsors for the Foundation and the March, as well as ideas for social networking to get the message out about the March. I welcome all input and connections, and it is thanks to our wonderful Team Mattie, that I made a great connection with a person who could potentially speak at our opening ceremony at the March. I will keep you posted as things solidify.

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Today, as my mind thinks of Mattie, I look back on my visits with you and wish I had spent more time in your room...more time cheering Mattie on as he race around the 5th floor...more time watching him construct his lego masterpieces. Although I know you feel this too, I wanted you to know the connection that Mattie created with someone and actually many someones, who at one point were perfect strangers to you. This connection is just part of his power; another of his gifts. Thinking of you, this Tuesday and everyday."

The second message is from my friend, Charlie. Charlie wrote, "I think we forget how important it is for people to be able to make decisions about their own lives. As people get older, frailer and physically slower, we tend to assume they are becoming more childlike and step in and make decisions for them. This is wrong; if they are able, they should be part of the decision making process and once again, thank you for your advocacy on behalf of others and for reminding the rest of us about what is important. I hope Mary and Ann are able to come to a decision together about what will be a better place for Mary to live. It was lovely to read about your visit with Christine; I know Campbell will always remember Mattie. I say that because I had a childhood friend who died when I was six and I never forgot her so I know that children's memories and emotions are much more significant than we adults are often willing to admit. Your friend Nancy's email brought up an interesting point about grieving in Judaism, that difference between what one is obligated to do for a parent and what one is obligated to do for anyone else. I've read a lot of rabbinical thoughts on this and none of them are really clear to me so I tend to side with Nancy and say that if you feel that the mourning/remembering/honoring the dead is appropriate for longer than a month, that is what you should do. I think that applies to non Jews as well; you have to do what feels right in your heart. I hold you gently in my thoughts."
 
The third message is from my friend and colleague, Nancy. Nancy wrote, "I just read yesterday's blog. The poem that Charlie created was so genuine. It was a tribute to the entire Brown family and especially to you. She is a great friend. I find her messages powerful as well. I applaud Ann and you in trying to help Mary make a decision about her living quarters without trying to sway her one way or the other. You are so correct when you talk about older adults, especially our parents or friend's parents, needing some control over their destiny when they are getting frail. Mary and Ann are lucky to have you in their corner as I know you feel about them. Your lunch with your friend sounded so comforting. I, too, have been astounded by the depth of children's feelings in time of struggle and pain. They truly are teachers for the adults in their lives if one can listen. The old adage: "Children should be seen and not heard," I think I have it right. It always disturbed me as I've learned volumes from my children over the years. This is another way for you to give to others by advocating for families in health as well as sickness. As I look out my bedroom window at Manhattan and the beautiful sunny day, I hope that you are having a similar peaceful moment. Have a beautiful day. With friendship and love."