Wednesday, November 11, 2009

Wednesday, November 11, 2009

This picture was taken days after Mattie was diagnosed with Osteosarcoma in July 2008. By this point we knew theoretically what Osteosarcoma was, but we had no idea of the living hell that was in store for us. Mattie wanted to celebrate Christmas in July, so we pulled out all his outdoor lights. After we set it all up, he jumped into my lap, because he was happy for that moment in time. I remember how scared I was back then. Now I only have memories of Mattie's hugs, kisses, and voice. I can't think of a greater pain for a parent. Peter and Mattie always did a holiday light display in our complex. It grew with each year that Mattie was with us, and it really was remarkable. In fact, we had neighbors photograph it from year to year. This year, I have no idea what Peter will do, or if he will even want to do a light display. However, for us, the spirit of Christmas seems to have died on September 8, 2009.

Poem of the day: A Million Times

You never said I'm leaving

You never said good-bye

You were gone before I knew it

And only God knew why

A million times we've needed you,
A million times we've cried.
If love alone could've saved you,

You never would have died.

In life we loved you dearly,

In death we love you still.

In our hearts you hold a place,

No one else will ever fill.

It broke our hearts to lose you,

But you didn't go alone.

Part of us went with you,
The day God took you home.

Jenny and Jessie (Mattie's art therapists) sent me some very special pictures that I would like to share with you tonight. As my regular readers know, Jenny and Jessie were two of our lifesavers throughout Mattie's illness. They stimulated him, entertained him, and got him to process some very difficult feelings through play and art. I will never forget these talented and loving women. I consider them one of the gifts I received throughout this ordeal and torture. After Mattie died, they ran a bereavement art therapy project in the clinic to help the other children process Mattie's death. The pictures they sent to me illustrate the art project that was generated from multiple sessions. Mattie's clinic buddy, Maya, was instrumental in this project's creation. I haven't seen Maya since Mattie's death, and a part of me wonders how she is doing with her buddy's loss. Mattie did not connect with other kids his age in the clinic, but he did instantly connect with Maya. She and Mattie had many similar qualities, they were both.... bright, creative, well spoken, and full of energy and life. As Mattie's mom, I am deeply touched that Jenny and Jessie gave the children an outlet to express their grief and memories of Mattie, and that they took pictures of the project and shared it with me. It does my heart good to know that Mattie hasn't been forgotten at the Lombardi Clinic, a place where Mattie intensely spent his last year of his life. Thank you Jenny and Jessie!

Jenny sent me this e-mail, and I thought you would like to read it. Jenny wrote, "Hi Vicki, Jessie and I just wanted to say hi and let you know that Maya was in clinic today and she continued to work on the group project that began in a bereavement art therapy group. It's a cardboard box project (to honor Mattie, of course), and inside is a miniature version of the art therapy area of clinic, complete with mini model magic versions of Mattie (and wheelchair), Maya, Brandon, Linda, us, Jocelyn, and Bridget. The art table is there as well. Today, Maya made mini versions of some of Mattie's magic trick supplies (boxes with swords and rings, the hat with the American flag...) she remembered a REMARKABLE amount of Mattie's tricks, and talked a lot about him. Maya's vision is that the group is WATCHING Mattie perform magic tricks in the scene. We have a new art therapy intern, and Maya told her ALL about Mattie and how sad we all were when he died. Just wanted you and Peter to know that Mattie is still very much alive and well (and fiesty!) in our minds and hearts, and in those of his friends at clinic."

Left: The Art Therapy box remembering Mattie in clinic. Notice the replica of Dr. Crazyhair in the back left hand corner of the box. Mattie would have been thrilled for many reasons! As you know, he loved cardboard boxes at the Hospital!

Right: You can see Mattie is sitting in a wheelchair by the mock art table. He is located in the front left hand corner of the scene. This is typically where he would sit at the art table.

Left: Mattie did several paintings and drawings in clinic. The children made replicas of Mattie's works. Notice the infamous cockroach!

Right: A close up of Mattie in his wheelchair. Maya (Mattie's clinic buddy) made sure that Mattie's wheelchair was propped up with wood, so that he could reach the table in the scene.

Left and Right: Notice in this art scene, Mattie is portrayed as being bright eyed and smiling! I wish I could remember him this way, and perhaps I will in time.

Today, I went to the shopping mall with Ann. Ann is planning a mall scavenger hunt party for her older daughter's birthday. Though Ann hasn't actually admitted this to me, I think her psychology of including me during the planning stages of this party is that it motivates me to get out of my home, around other people, walking, talking, and focused on something else for a few hours. Of course, as we are walking and figuring out party stops for the scavenger hunt we are also talking about Mattie or feelings I have around this loss. I always joke with Ann, that there are times I am surprised she just doesn't need a break from me, my moods, my confusion, and the list goes on. But some how, she never wavers and can at times get me animated or laughing about certain things. What I wasn't expecting during the mall visit was the simple fact that stores are beginning to decorate for Christmas. This for some reason brought me great sadness. One store was actually playing Christmas music as well. I think what bothered me the most about seeing Christmas displays was that in my heart, the holidays are non-existent. Things are dead for me, and yet, my frustration is I see the world around me moving along as if nothing happened to upset the natural order of things. The only one who seems impacted by this is me, and this leads me to question then what is the meaning of our time here on earth? If a seven year old can die, and this doesn't cause the world to stop and take notice, then really what is the meaning of any of our lives? I certainly know that Mattie has caused us all to learn a great deal about our lives and our priorities this year, but is that enough? It is a humbling thing to think that we could die tomorrow, and certainly our family and friends may be devastated, but the world continues to revolve, holidays continue to come and go, and really nothing is perceived to be changed.

One of the questions I continue to ponder is how do Peter and I celebrate Christmas? I have come to the conclusion that I have no idea. I do know that I am not writing Christmas cards or buying gifts for the most part. These things no longer bring me happiness or joy. In fact, I find that purchasing things for myself makes me feel very guilty and inappropriate.

This evening, I had to contend with laundry. What appears to be a mindless task for most people, for me the laundry is filled with memories, and it is challenging. Mattie was always with me when I did laundry in my complex. He would either be riding his bicycle with me to the machines or he would be bringing toys along. Certainly in his baby years, laundry was a three ring circus. Because it meant pushing him either in a stroller or carrying him and dragging the laundry behind me. However, Mattie wasn't a baby who liked to be held or confined, so laundry in the early years was an adventure. I can't walk to our machines without thinking about Mattie, and therefore, even this mundane task becomes an activity of remembrance.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am so glad you were not hurt in the accident on Tuesday. It must really have been a shock. There is a tremendous sense of confusion and unreality when that happens so unexpectedly and that, added to the natural confusion created by grief must have made you feel very vulnerable. I am glad you had yourself together enough to call for help. As to the behavior of Ann's children, they know and accept what adults are reluctant to do; not mentioning Mattie doesn't keep him out of your mind or heart, and sharing thoughts of him is more on the helpful side than the pain and fear that he is forgotten. I can only speak for myself but I do think of Mattie every day (usually multiple times) due to an email about something I thought he would like or a bell or legos or a myriad of other things. Sometimes I smile, sometimes I cry and sometimes I just sit with the feelings. I don't know what else to say. Dr Snyder is a very special person as well as a doctor and you certainly were fortunate to have her treat Mattie during his illness and to have her be a physician (in the true sense) to your family. Many people who have had their loved ones die from disease don't feel that way about the doctor, the staff or the hospital; in that you are blessed. I hope today you can find a space in which to find some peace for a little while and let some of us pick up the task of remembering for you."