Tuesday, November 17, 2009

Tuesday, November 17, 2009 -- Mattie died 10 weeks ago today.

Tonight's picture features Mattie in the hallway of the Pediatric Intensive Care Unit at Georgetown University Hospital. He was participating in a science experiment with the University's chemistry club. Mattie loved these experiments, which took place almost every Friday. You can see in this picture, Mattie is focused, wearing a glove, and is trying to catch a ball made out of dry ice.

Poem of the day: Think Before You Speak by Gwen Flowers


Dear Friend,
today you broke my heart,
In a place that was unbroken.
You did it with your thoughtless words
That should not have been spoken.
You know that I am grieving,
That my pain is deep and real.
Your hurtful words pierced like a knife.
How do you think I feel?
You may not suffer from my loss
Or share this lonely grief,
But I'm mourning my baby,
Who's life was much too brief.
I'm sure you don't know how I feel,
I don't expect you to.
Don't ask me to get over it....That's something I can't do.
Without grief, there's no healing
It's a journey I must make.
It's not the path that I would choose,
but one I'm forced to take.
No matter how you choose to see
What I am going through,
I need compassion and support....
I'd do the same for you.

There is a line in tonight's poem that speaks volumes to me.... "It's not a path that I would choose, but one I'm forced to take."This indeed is very accurate, because no one would select the option of losing a child, but such a tragedy can and does happen in life, and now Peter and I are forced to deal with it. There are times most recently when Mattie's death is too much of a reality for me. It is in those moments when I freeze and feel confused and lost and not sure how I will manage without Mattie being a part of my life. In my head I just keep hearing myself say..... seven year olds are NOT supposed to die. Each day when I enter into my complex's garage, the garage attendant waves at me. The only reason he waves at me is because he liked waving at Mattie in the back seat. This attendant doesn't know that Mattie died, yet each day as he waves at me, I can see him peek to check for Mattie, in hopes that he can wave to him too. The attendant seems perplexed by the fact that I am driving around ALONE, without my buddy behind me. I can only imagine the conclusions this attendant is coming up with regarding where Mattie is, but I am quite certain he would not be concluding in a million years that the reason he doesn't see Mattie is because he died. This is a path no one would expect or accept happening to a young child.

I went shopping with Ann and Mary (Ann's mother) today. It was a big event getting Mary out of her assisted living facility and into Ann's car. Transfers, from her wheelchair to and from the car, are a skill and an art form. But a change of scenery for Mary is vital, and in all reality I relate to Mary's feelings on so many levels. At one point we were in a Hallmark store today, and naturally this store, like many other stores is playing Christmas music. For the most part, I try to tune out the music, the decorations, and the Salvation Army people ringing their bells because to me, there is no Christmas this year. However, while in the store today, the song, "Have Yourself a Merry Little Christmas" started playing and Judy Garland was singing it. I know many of you know I love musicals, but I also love old movies. Growing up, I must have seen every old movie possible with my grandmother who lived with me and my parents. She introduced me to a wonderful world where movies have a story line, intelligent, and meaningful dialogue. Hearing this song in the store today made me flash back to the Christmas holidays when I would watch such holiday classics, like "Meet Me in St. Louis," starring Judy Garland. For those of you who have never seen this movie, here is a description. Meet Me in St. Louis is a 1944 romantic musical film from Metro-Goldwyn-Mayer which tells the story of four sisters living in St. Louis at the time of the Louisiana Purchase Exposition World's Fair in 1904. The song, Have Yourself a Merry Little Christmas, first appeared in a scene in Meet Me in St. Louis, in which the Smith family is distraught by the father's plans to move to New York City for a job promotion, leaving behind their beloved home in St. Louis, Missouri just before the long-anticipated Louisiana Purchase Exposition begins. In a scene set on Christmas Eve, Judy Garland's character, Esther, sings the song to cheer up her despondent five-year-old sister, Tootie, played by Margaret O'Brien.

I put a clip from the movie below in case you want to hear Judy Garland singing this wonderful holiday favorite.

http://www.youtube.com/watch?v=5g4lY8Y3eoo

So despite my best effort to avoid Christmas, the magic of Christmas entered my spirit through this song today. In fact, I landed up tearing up in Hallmark because to me this is a sad holiday song that captures the heartbreaking feelings of losing something or someone. Pretty soon after hearing this song, I met up with Mary at the store, while Ann was purchasing things for her mother. I bent down to talk to Mary, and she could instantly see I wasn't doing well. So she started talking to me. She said she was concerned about me because I looked tired and then she said that she understood how I felt because how could I feel any differently. My life has been forever changed. I just nodded my head yes, she smiled at me, and nothing else needed to be said.

We all went out to lunch together as well and right near our table was a newborn little boy. Naturally as I observed this baby today, I couldn't help but wonder why my little baby grew up to become so sick. In fact, I don't look at babies the same way anymore. Babies should be viewed as the pure symbol of joy and life, but in my case, I can't help but associate babies with intense grief, loss, and pain. I can't help but wonder why Mattie was chosen to develop cancer, why we were forced to experience and witness this torture, and remain living to tell about it? Why are we so unique? Why is this our calling? I rather not be so unique and special!

On Wednesday, I am returning to the Lombardi Clinic for the first time since Mattie's death. I asked Linda (Mattie's childlife specialist) if I could work with Deborah, the bead lady. Deborah helped Mattie and I create necklaces and bracelets while Mattie was in clinic receiving treatments. However, two of Mattie's creations need to be fixed (since I wear them a lot), and I asked Linda if it would be possible to return to do this, and perhaps create another piece. Linda, as always, is very supportive of me and has set up this meeting tomorrow. I believe I will also be seeing some of Mattie's nurses tomorrow, so this should be quite a moving day. In the evening, I will be getting together with Jerry and Nancy. Jerry and Nancy were the hospital volunteers who played "name that tune" with Mattie and also gave Mattie an electronic keyboard. They were one of our favorite set of volunteers, and therefore, Wednesday in a way is like returning home again. Filled with all sorts of emotions and memories.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Doctors. Some are "People persons," some are properly trained to understand the whole person concept and some are not much more than good in their specialty. Unfortunately, you went to the last kind on Monday. It seems your batting average was "2 out of 3" for good ones which given the current state of training of physicians is better than most, however, it doesn't help when you run into the insensitive ones. I do hope that in spite of the poor patient relationship he was able to give you some positive news. As always, thank goodness for Ann and her unwavering support; she certainly understands where you are right now. I read Sara's email and all I can say is that talking about Mattie and things he enjoyed, things people remember is never a bad thing. Just because someone refrains from mentioning his name doesn't stop you from thinking about him and it helps to know that others are thinking about him as well. The unhelpful words are "you will get over it," "this will pass" or other comments that imply that somehow you will forget the loss of your son. That will never happen. Grief does lessen with time but the loss never leaves us. Try to do something for yourself today even if only for a short time."