Tuesday, January 19, 2010 -- Mattie died 19 weeks ago today, or 133 days ago.
Tonight's picture was also sent to me by Susan, a staff member at Mattie's school. The picture was taken on November 11, 2007, in Mattie's kindergarten classroom. Mattie and his table buddies (from left to right: Elizabeth, Claire, Mattie, and Cameron) were preparing sandwiches to distribute at Martha's Table, an organization dedicated to fulfilling the needs of low-income and homeless children, families and individuals in Washington, DC. I had the opportunity to go with Mattie's classroom to Martha's Table, and it was an incredible experience to see four kindergarten classrooms actively helping out Martha's Table staff and working collaboratively. I never travel WITHOUT a camera in my purse, and Mattie's teacher asked me to be the photographer for the group that day. I had a wonderful time capturing that happy moment and I am glad that whenever a parent was needed to do something in Mattie's classroom, I tried to help. I can now look back on all we did together with satisfaction, because unlike other parents, I wasn't allotted a lifetime to make memories with my child.
I am numb.
I feel so empty
Like a hollow walking form.
Then at times I feel
As though my chest will
Burst wide open and all
The hurt and pain
Come spewing forth.
Will it ever end?
He was my first born.
[cancer] took his life
And shattered mine.
His ashes lay along
The mountain side.
A bright star shines
From the heavens.
It symbolizes him.
He looks down
And whispers: Mom
Everything will be fine.
It is another Tuesday, and being a Tuesday it marks the 19th week that Mattie is gone from our lives. I count our loss in weeks, and Peter counts our loss in days. Mattie has been gone 133 days to be precise. As many of you know Peter and I have Mattie's ashes at home with us, in a beautiful Italian made music box. A box made in Sorrento, Italy, a place that holds great significance to me. I spent many summers growing up in Sorrento, carefree and happy, and it was my hope some day to share that journey with Mattie. Since I was unable to, I thought it would be fitting to lay him to rest in a box that is made in what I consider a magical and breath taking place. Since Mattie's death, I continue to place different objects on top of his box. At the moment sitting on his box is a model magic hand and foot print that Linda, Jenny, and Jessie helped to create in the PICU, the day Mattie died. I have also added one praying crane on top of the box. My sister-in-law gave me this crane for Christmas, and since the crane was a vital symbol to us throughout his treatment, I felt it was fitting now to sit on his box, in hopes of giving him peace, happiness, and freedom from pain. I debated what to do with Mattie's remains, and frankly I still don't know what to do with them. In fact, they may follow me where ever I live, because to me it is important to be able to visit him whenever I want to.
I had the opportunity to spend part of today with Ann. In the morning, while she was running chores, I just stayed in her house and read the book that was selected for our book club. This is a historical fiction novel, that has captured my attention. The main character is dealing with the loss of his wife from bone cancer, and this man is also dealing with a host of other issues that have scarred and shaped him. On some level it is impossible not to identify with this man, and I am intrigued to follow the story. I can't say this is true for many of the books I read, so this has been a pleasant surprise. I still have trouble concentrating, and at times my mind wanders while I read, but I am able to get back on track rather easily, because the story is compelling. I met up with Ann and Alison for lunch, and in a way, my relationship with them is evolving. Keep in mind that in the past, when I met with Ann and Alison, there usually was a Mattie crisis and we would meet to brainstorm the next steps. Crisis, per se, no longer brings us together, but I am quite certain Mattie's crisis solidified a foundation of friendship that I am only opening my eyes to now.
As I was talking to Ann this afternoon, I came to the realization that in order to feel somewhat connected to the world and to feel alive, I need to have a crisis. Or at least a level of intensity now that keeps me engaged and focused on a task. Logically this is a direct aftermath of living in crisis for over a year, and then losing Mattie. It is almost as if my body flipped a switch and I am left with two modes of functioning, crisis or intense shut down. Needless to say, it is like riding an emotional rollercoaster, and I wish I could just stop the ride.
Tonight Peter and I had the wonderful opportunity to have dinner with Debbi, our Sedation Nurse angel. Mattie was deathly afraid of PET scans and MRI machines. His initial doctor thought he could do these scans without sedation. Clearly this doctor did not understand the fear a six year old experiences after initially being diagnosed with cancer. Linda (Mattie's childlife specialist) called Debbi into a scan appointment one day, and Debbi saw the fear and anxiety exhibited by Mattie. Mattie was so frightened, that he jumped off the table, and was having a tandrum on the floor. Of course, there I was on the floor right next to him, pleading with him and trying to get him to calm down. This was enough for Debbi to see. After that point, when we requested sedation for scans, we were accommodated, no questions asked. In addition to scheduling all sedations for us, Debbi and I also became friends. She saw the hell we lived day in and day out, and was there as an incredible support and ally. After receiving bad news, which happened a lot throughout the year, Debbi would always give me access to her sedation room after hours to escape from the PICU. But in the end of Mattie's life, Debbi was instrumental. She coordinated sedations for every cyberknife treatment, for the placement of his NG feeding tube, and also allowed me to wash him while under sedation. That may sound trivial, but Mattie was in so much pain, that without sedation, I couldn't clean him. Debbi did not earn the title, "angel" without merit!
While talking to Debbi tonight, I cried several times. Debbi and I have this kind of rapport, where expressing how I feel at any given moment is understood and appreciated. Debbi explained to me that she and many of the HEM/ONC nurses feel very connected to Peter and I. I assumed this happened with every patient and family, because in my view, these women are just that special. This is not their job, they are the job. Their love, empathy, and skills define them, the environment, and how they connect with their families. To me these nurses weren't our nurses in the end, they were our family. They suffered with us, they cheered for us, and they faced things that most would shy away from. However, tonight, I could see that my feelings weren't one sided. That our nurses love us too, and that when they look at each other in the hallways now, they only need to smile at each other, and they instantly know that they are reflecting and thinking about Mattie. What can I say, I am DEEPLY, DEEPLY touched! Touched because Mattie was more to them than just a patient, and in the end our love and respect for one another did go two ways. I am left forever changed by this whole cancer experience, and I have learned through Mattie's death, the true meaning of love.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "My instructor said yesterday that most events (bar the really terrible ones, death, disaster) are how we label them. A traffic jam is therefore not bad unless we decide it is, or it can be a chance to sing along with a favorite song or have a conversation with someone you love. That's how I see your walk on Roosevelt Island; it is what you make it. It can be a walk down a positive memory lane or a negative experience. You still have the ill Mattie in the forefront of your mind and perhaps you need to travel the places where the memories were of a healthy Mattie to eventually replace them in the immediacy of your thoughts. There is no chance you will forget Mattie; none of us who have been a part of this will ever forget Mattie but hopefully, eventually the memories will be more of the happy ones and less of the latter very painful ones. Today as I practice I wish you a space of serenity and something that triggers positive memories of Mattie for you."
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