Tonight's picture was taken in August 2007, in San Diego, California. Each summer, we would take Mattie out to California to visit with my parents, who live in Los Angeles. During our visit, we would always venture down to San Diego for a few days. Mattie loved seeing the sailboats, being by the water, and visiting SeaWorld, Legoland, and the San Diego Zoo. From our hotel window, Mattie could see these bicycles journeying passed him. So he encouraged us to try this experience. I guarantee you, this looks a lot easier to do than it actually is.
Nonetheless, we all had a great time, and Mattie loved the entire bicycle trip. I think his smile speaks for itself.
Poem of the day: I Can Almost See You Smile by Victoria Walker
I can almost see you smile
In the shadows of my mind,
Bringing to me the peace
I have struggled so hard to find.
I can almost hear your voice
Telling me “Be not saddened nor afraid,
Just remember all the good,
How we loved and laughed and played.”
I can almost feel your touch
Wiping away my every tear
As I stand among my shattered dreams
Letting me know you are still near.
I can almost hear you say,
“One day, you’ll be here too.
Live the life you have before you
For I will be here, waiting to welcome you.”
This morning I felt absolutely exhausted and could tell this was going to be a difficult day emotionally. I have my moments when I function quite well, but then there are days where the littliest things will set me off. Seeing Mattie's pictures around our home were thoroughly challenging. In our kitchen, I have many pictures of Mattie, and in these pictures it almost feels like Mattie's eyes are piercing through mine. Maybe I react this way to his pictures because he is my son, but I do not feel the same reaction when looking at pictures of other people. As I began to cry, I heard Mattie's wind chimes twinkling on our deck. All I could think of and say was, "Hi Mattie, I am happy you are with me today."
Despite the mood I was in, I was focused on getting ready because I knew Mary (Ann's mom) was expecting to see me today for our lunch. Shayla (Mary's care companion) and I were text messaging back and forth all morning, as we were confirming Mary's lunch preferences. When I got to Mary's assisted living facility, Mary was sleeping. She was absolutely exhausted, and Shayla let me know that Mary seemed very sad and not herself starting on Thursday. So much so, that Mary was unable to accomplish much with her physical therapist yesterday.
While Mary was napping, Shayla and I had a nice time chatting. Shayla balances school, Mary, and her children. She is studying to become a nurse, a profession that I deeply admire. However, our luncheon party continued to grow when Margaret came by to visit. Margaret was Mattie's first preschool teacher, and she visits Mary on a regular basis. The irony is Mary has been talking about Margaret all week, so the fact that Margaret visited today, was just what Mary needed.
We woke Mary up for lunch and to visit with Margaret. When Mary saw me, her first question to me was "are you okay?" She told me she was worried about me because she did not see me on Thursday, and she missed me (I told Mary on Wednesday that I wouldn't visit on Thursday, but these kind of facts are hard for Mary to keep straight). I was touched that Mary seemed to remember my absence. Each time Mary and I see each other this week, we do an Ann countdown (as to when she is coming back from vacation). We joke about who misses her more, and this usually gets Mary to laugh. The mantra in the entire facility today is..... IT IS ONLY TWO MORE DAYS (until Ann returns)! All of Mary's care providers are seeing just how important Ann is to Mary. This is not something I did not know already, but it is always fascinating to see this through the eyes of others. Mary's care providers at this new facility are lovely, compassionate, and very family oriented. Moving Mary to this new facility was ultimately the right decision. She is less agitated and it is clear that her physical needs are managed better.
Mary was thrilled to see Margaret, and to receive a beautiful plant from Margaret. Mary sat with Margaret, myself, and Shayla to have lunch. I think Mary enjoyed the conversation, the stimulation, and the fact that we thought about her by bringing in flowers and food for her. Mary ate quite well this afternoon, and I think she liked the fact that she got to select what she wanted to eat, rather than being served what others decided upon for her.
After lunch, Mary and I sat together for about two hours and looked at her family photo albums. One book in particular was made by Ann for Mary, on Mother's day. The album was very touching, but I realized after looking at all these photos, that I was deeply, deeply sad. I was sad because I got to see Ann's children grow and progress from infants, to children, to who they are today. I naturally couldn't help but feel heartbroken by the fact that I don't have Mattie in my life. When this feeling comes on, it is hard to shut it off. Instead, I land up spirling down hill, and can get to a very low and confused place. I stayed with Mary through dinner. She thanked me for being with her during dinner, because she said I made it easier for her.
Before I headed home, I went to Target. I had some items that Mary needed for tomorrow. While roaming around in the store, all I could see was one child after another with his/her mom. It was almost like a constant reminder today of what or who is missing in my life. While shopping, I overheard a little girl, maybe 4, talking with her mother. The little girl was curious why this little boy a couple aisles away was screaming and crying. She was particularly interested with how the little boy's mom was responding to him. The line of questioning stopped me in my tracks, because Mattie used to ask me questions just like this. He was always very curious to understand why others were upset, and what could be done to correct that situation. He also was always very interested in knowing how I would have handled such a situation if the child in question were Mattie, rather than the bystander we were listening to. Mattie was an unique 6 year old, because he analytically looked at emotional situations, wanted to understand them, and also wanted to dialogue with me about them. The apple did not fall far from the tree! He was only 6, but emotionally he was on my plane of thinking. Therefore, how on earth couldn't I be devastated and crushed without this special person in my life?
By the time I got home, I was NOT in a good place. Peter could sense that immediately. He just sat down and listened to me. I went from yelling (not at him, but in general) to crying. Despite all the emotions Peter has on this same topic, in these times when I fall apart, he is right there for me, and not turning away from the pain.
While I was visiting Mary, Peter journeyed to Georgetown University Hospital. One of the teenagers who we had gotten to know when Mattie was in treatment, relapsed. She has a long road ahead of her as she fights her cancer, but Peter and I admire her family's love and determination. Peter visited her and her mother tonight and brought them dinner. I supported Peter in this, and I knew this is something he deeply wanted to do. We greatly feel for this special family, and we know how wonderful it was to receive non-hospital food from our Mattie Team supporters, that we want to return these special moments for others battling with cancer. As Peter visited the HEM/ONC unit, he saw two of our favorite nurses, Tricia and Miki. These are two fine women, who devoted a great deal of time getting to know and love Mattie. I most definitely would have been thrilled if I never had to experience pediatric cancer or step foot into a PICU. However, that would also have meant that I wouldn't have met the fine nurses who became part of our treatment family. Experiencing such fine individuals, does restore one's hope in the world. Peter also ran into Brandon (Mattie's big buddy) and Toni (Brandon's mom) at the Hospital. Brandon had to get a colonoscopy today, however, despite the long day of testing, the good news is Brandon is fine. We were thrilled to hear this news. I think Brandon has seen enough trauma from cancer for a lifetime.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "The dream sounds awful and frightening. According to the dream dictionary, dreams of cancer signify grief and loss (no surprise) but if you were being treated for cancer it means there is a change for something positive coming into your life. I hope that is so for you. When I woke up this morning and looked out the first thing I thought was oh, too bad it is raining. I wish the weather were sunny for your lunch with Mary. However, I know that you will bring your own sunshine with you to the visit as you always do. I am very much looking forward to hearing about the visit and seeing a picture of Mary up and around if she is amenable. In spite of the weather, I wish you a day that has emotional patches of sunlight in it. I hold you gently in my thoughts."
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