Friday, November 6, 2009Tonight's picture features Mattie in the Lombardi Clinic. Notice what he is holding... a picture of what else? Yes a roach! Jenny and Jessie (his art therapists) printed the picture of this roach from the Internet for Mattie, and from this picture he designed a roach out of model magic. The model magic roach actually looks life like. Mattie would display the roach in his PICU room during most admissions. However, at one point we lost the model magic roach while moving out of Mattie's room. We were both upset by this, but then realized during another admission that someone in the next unit found the roach and loved it, and put it on display in that unit. When we learned about our displaced roach, we reclaimed it!
Poem of the day: To My Mother by Dawn Mitchell
I see you each time you shed a tear,
I catch it and kiss you,
I hope that you know that I'm near.
This place is so beautiful,
There's so much to see!
I know that someday you'll be here with me.
The angels were singing when I arrived!
Jesus was there with His arms open wide!
The snow and the rain are just my confetti.
I know you'll be coming and I want to be ready.
When you feel the wind, it's me walking by.
I can run and skip now, I can even fly!
When the blossoms and leaves fall into your hair,
It's me planting kisses, yes,
I put them there!
The birds are singing to keep you company,
They're especially for you with love from me.
I know that you miss me and feel so alone,
Until the great day when you finally come home
Please remember as the seasons change from one to another,
I'll always love you.
You're my friend and my mother.
I received this e-mail today from Sammie's mom, Chris. As many of you know, Sammie lost the battle to Osteosarcoma in October 2009. Chris and I have had the opportunity to e-mail back and forth throughout this year, and I find as we are grieving over the loss of our precious children, I find her support and insights very reassuring. Chris wrote, "I am too tired to write and I am sure you are too tired to read anything too long.. I just need you to know that I TOTALLY get the pain of watching your child die when they really did not want to. There was nothing easy about Sammie and Mattie's passing and I feel like we witnessed similar things as they fought to stay with us. I can not erase the look on her face from my mind. I will never say to you that I know how you feel because even though we both lost our children to this very cruel monster called Osteosarcoma the grief is very personal and I can only say that many days we travel the same lonely road. I do not know how we get up every day but I will tell you the mornings are awful and hard and then nightfall comes and I unravel all over again. I send you my love and my respect."
Though Chris and I live on completely opposite coasts, we are both experiencing similar feelings and reactions to the traumatic loss of our children. I find it reassuring to hear that I am not the only one who feels disengaged from the world, unable to focus on anything, no desire or energy at times to interact with others, and the list goes on. I find that the world of cancer is a small place, and Peter and I united with many people this year who experienced cancer personally or in their family. However, we are now part of an even smaller and tighter family, the family of those who have lost a child to cancer. In a way, in this family no words are needed, we just get each other right away. We get the emotional pain, we get the memories of our children living through torturous treatments, and most of all on some level we get the loneliness, isolation, hopelessness, and at times despair that can fill our current days.
I had the opportunity today to have lunch with Ellen, Charlotte's mom. Ellen and her family have done so much for us this year. Her support never wavered, and for that and her friendship we are very grateful. Ellen shared a current story with me. She said that Charlotte told her art teacher this week that Mattie loved butter. They were talking about butter balls in class, and Charlotte couldn't help but relate the class lesson to her friend, Mattie. I found this very touching, and every time I hear one of Mattie's friends recall a funny story or memory about Mattie, it makes me smile. I enjoyed the opportunity to talk with Ellen, and as I told her, she does not need to experience what I went through to be able to support me appropriately. I just value a friendly and understanding heart and mind, and all I can say is thank goodness the majority of the world doesn't feel the same kind of pain Peter and I do. If it did, we would have a society unable to function.
I had the opportunity to take Ann's children out for ice cream today. Ann's youngest daughter, Abigail, and myself are both chocolate lovers. While we were sitting and eating ice cream, all of Ann's children and I reflected on our ice cream choices, and we discussed what Mattie would of had if he were with us. Abigail and I both agreed that Mattie would have disliked our choices intensely. Tonight, Ann and Bob are flying home, and soon our child care responsibilities will be coming to an end. Naturally I would imagine you probably can understand our mixed emotions about this. Though raising children is definitely challenging, time consuming, and on some days sucks the energy out of you, in the end, there is nothing more satisfying to know than you have influenced a life. I am also getting the opportunity to get to know Ann's oldest daughter, Katie. Katie will be turning 12 years old in less than two weeks, and through her I am learning about the complexities of the teenage years. I certainly am aware of these issues from a developmental and counseling perspectives, but actually living a day in the life of a pre-teen has been very enlightening. It is a fine balance between setting limits and yet trying to connect with her on an emotional level. Far more complicated for a parent than some of the issues faced in the elementary school years. Needless to say, these few days of watching Ann's children has been good for me, because I thrive on the desire to care for others and to be needed. Without Mattie, at times I feel like I am floundering, or as I told Ellen today, wasting my time and my life. Naturally on a cerebral level I know this isn't true, but there are times this is simply how I feel.
I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "Since I can't see children anywhere near Mattie's age without thinking about him, I can just imagine the tip of the emotions that are stirred for you. I applaud your courage in facing the campus and I have no doubt that the feelings are so strong as to cause physical illness but I hope that will subside with time.Reading about Abigail and Katharina made me smile; while children are sensitive they also seem to cope so much better than we adults do. Tricia's email was "spot on" about how it seems some people don't appreciate what they have or understand what is truly important (family) until they don't have it.I know my life has been profoundly changed by walking this path with you; I continue to pray for you and Peter each day. May all the good you do for others build a place of peace in your heart."
The second message is from Mattie's oncologist Dr. Kristen Snyder. Kristen's message was very symbolic to me, because in a way, Mattie was communicating to us through her flower bulbs that began to bloom. Almost as if Mattie had a rebirth. I do realize that this may be my attempt to feel that Mattie is okay. Kristen wrote, "Today, as I left my house, I glanced over at my landscaping to my left. Several weeks ago, on Sunday, October 11, I spent the afternoon planting hyacinth and tulip bulbs. The first frost had fallen and so I assumed it was safe to do so. Today, as I scanned the yard...much to my dismay...there are bulbs coming up!!!! Yikes! I immediately thought of Mattie...for two reasons. One, this is certainly something he would be interested in. And two, this is certainly something that could be of his doing! As Tricia so eloquently put "you are always on my mind." It is amazing the connection you have created with so many...the intricate web that Mattie helped to weave. And like a true spider's web it is as strong as steel. As the days and weeks stretch into months know you can count on the support and strength of this web of friends and community."
The third message is from my friend and colleague, Sara. Sara wrote, "I just wanted to write a quick email to say congratulations on launching the Mattie Miracle Cancer Foundation. It is so amazing how quickly you made this a reality. It feels a little odd to say congratulations or to have a celebratory tone because the foundation is the result of a terrible tragedy, but I think the two of you deserve to be congratulated for the inhuman efforts you have made--first to help Mattie battle his cancer and live the most authentic life he could while going through that ordeal, and then for setting out to help other families and raise money for research. Mattie would be so very proud of you. I also want to acknowledge the two month anniversary of Mattie's death. I agree that it is hard to fathom that 2 months have passed. How did that happen? Really, how did any of this happen? It is still a strange, strange, strange reality. I'll never forget the day Mattie died. It was a very strange juxtaposition for me. It was the first day of the 2009-2010 school year. I got to school super early, preparing to welcome all of my freshman and conduct a freshman orientation. As you can imagine, this takes a lot of energy--hyping yourself up, yet trying to help contain the anxiety of the nervous students. Well, I honestly just didn't feel like doing it. I knew you all were in the hospital and that Mattie wasn't doing well. I just had a sick feeling to myself and I really didn't want to participate in the activities. Of course, I did it, but it honestly was the first time in my 8 years as a school counselor that I did it half-heartedly. I was just walking through the paces. And sure enough, by the time I got back to my office I had an email from Charlie telling me that Mattie had passed. Every cell in my body told me to leave the office and go to you. I just wanted to leave. Something much more important was happening and transpiring and I wanted to be with you (even though that really wasn't my place). That evening I had to teach class, and WOW, was that a challenge. The next evening I had class. I just wanted the professor to cancel class and for all of us to sit around and talk about Mattie. That was the only thing that seemed fitting. I miss him, too. And I didn't even know him well at all. But he was special, and it was so easy to see his specialness. It just emanated from him. I am so glad to read that Ann is wearing the pin Mattie gave her. That is so sweet and special. I hope Ann's children know how lucky they are to have you watching over them. They are also special children and I hope being around them helps lessen your pain a bit."
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