Tonight's picture was taken in February of 2003. Mattie was 10 months old and sitting on Peter's lap. One of the reasons I am showing you this picture is because it highlights Mattie's relationship to his bottle. Mattie was a VERY active little fellow, however, when it came to consuming a bottle, a state of calmness fell over him. His arms did not move and his legs did not move, but instead, a look of absolute ecstasy could be seen in his eyes! The ironic part is as soon as the bottle was done, it was as if a switch was turned on, and Mattie would mobilize into action. Bottle times in many ways were special with Mattie. In which a calm and tender side of him were not only observed but felt. I am happy that Peter was able to share in these very precious and peaceful moments.
Quote of the day: I have always believed we can share our joy, but not our sorrow; sorrow is a solitary thing. Most of the days of our lives are just in different shades of gray. The sorrow went deep inside me. Joy is inside-out. Grief is outside-in. The sorrow stabbed into my soul. ~ Mare Sanford
Today was not the best of days for me. Not that any of my days are great, but some days are worse than others. Somehow today was one of those days. Not for any particular reason, other than I felt great internal turmoil. I relate very much to tonight's quote. Sorrow and grief are solitary things, they are hard to share, hard to explain, and most certainly hard to cope with. I couldn't have said it better, JOY IS OUT AND GRIEF IS IN.
I began my day with a surprise. I received flowers from one of my close graduate school friends in Boston. Jen and I survived a Master's degree in biology together and I was present in her life for the birth of one of her children and the death of her mom from cancer. When I met Jen, I had just graduated from college. I was dating Peter, but she was already married and had a child. Though we were in different points in our lives family wise, we understood each other and were very close. Somehow receiving roses today of various colors brought a smile to my face, especially when I read Jen's card. In a nutshell she said that she thinks of me daily, isn't sure how I live with such pain, and that she always remembers our special friendship. Indeed! Jen is one of the things I greatly miss about not living in Boston. Perhaps it is hard to understand how 12 roses could have such an impact over me, but they did. In fact, when I came home tonight, not in the best of places or moods, I looked at the roses and smiled again. I suppose it made me stop and reflect that my friend was thinking about me, cares about me, and most of all remembers our friendship.
I went out to lunch today with Alison and Ann. As my long term blog followers know, Ann and Alison were instrumental in leading Team Mattie, when Mattie was alive and battling cancer. We wanted to celebrate Alison's birthday, and to me Alison will always be my friend who introduced the word, HOPE, to me. As some of you may recall, when Alison came to the hospital in September of 2008 to meet me, she literally took off the necklace around her neck and gave it to me. The necklace had one word on it, glimmering with rhinestones. It said HOPE! To me that necklace was symbolic, and I needed to hold on tightly to that word. So from the moment Alison gave me this necklace, I wore it all the time. Well that is until the day Mattie died. Mattie maybe gone, but the aftermath of cancer is alive and well. I can recall many things about his treatment and death vividly, but what I also hold onto is the feelings associated with his care. Though cancer has been an absolutely horrific experience, I also experienced people in a whole new way. I suppose that is in reaction to the intensity of the situation, but the connections I made to people like Ann and Alison during Mattie's ordeal, will remain with me always. Though Team Mattie was disassembled in September 2009, this Team and what it did will always be alive in my heart. In so many ways, I am having an internal battle of good versus evil in my head and heart. Good, of course, being the memories of Team Mattie, and the evil, pure and simple is Osteosarcoma. The funny thing about cancer for caregivers (like Peter and I) is the disease harbors a permanent place in your soul. This is something that surgery, chemotherapy, or radiation can't remove. Which is why cancer in SO many ways is a psychological disease!
After lunch, I went to visit Mary (Ann's mom). While I was visiting Mary, Margaret (Mattie's preschool teacher and my friend) came by to visit as well. We all chatted together for two hours or so. Margaret brought Mary all sorts of goodies, and Mary was deeply engaged in our conversation. Margaret and I have NEVER had trouble chatting, we can do this for hours, and we covered a lot of territory today. Naturally the conversation went to Mattie. It was during that conversation, where I actually put into words my feelings. Which were that I feel like I am living in LIMBO. I am no longer the Vicki I was before July of 2008 (when Mattie was diagnosed). In fact, it is hard to know what defines me now, what fills my days, and what my future holds. I know I have felt this way for some time, but actually verbalizing it was somehow upsetting. As we turned to Mary, to see if she minded the direction of the conversation, she stopped us and reminded Margaret that she too lost a son, and gets exactly what I am talking about. Mary maybe 82 years old, and we may be in different places developmentally, but in many ways, we view the death of our sons quite similarly.
When I got home tonight, Peter was already home from work. He had a very positive couple of meetings today, and he wanted to share them with me. What I admire about Peter is he can feel the same emotions about Mattie's loss, and yet he functions and is very productive. So when he spoke to me about his productivity today, I felt myself sinking further into my state of limbo or shutting down. It took great efforts not to disengage completely. But as he kept talking, I felt more compelled to hear what he was talking about. As I told Margaret today, I consider myself very fortunate that Peter puts no pressure on me. Because I know how difficult it must be for him to go to work each day, especially when I know how he is really feeling.
I received a message from Karen (Keaton's mom) today. She posted this comment to the blog, and I just wanted to make sure my readers got to see what she had to say. Like Karen, my heart goes out to all the people who died in Tucson. Any time such a tragedy takes place, it is a sad day for our Country and for our society as a whole. But Karen brings up a good point..... why isn't the media and the President equally outraged over the fact that 46 children a day are diagnosed with cancer, not to mention around four die a day from this disease!? It is a perplexing question. Karen wrote, "Your quote of the day sure described my feelings today..aching..can't breathe...drowning in tears..and they are SO not supposed to be gone.How could this happen? As I read your anguished words telling the world of the indescribable pain that comes from the loss of a child, I hear my TV in the background, with the president of this country, telling us all how he is mourning the loss of the six people who were killed by a monster with a gun. All I can think is, why did he and the country not mourn the loss of the over SIXTY kids I knew personally, who were killed in the last three years, by a even more horrid and sadistic monster? What about Mattie, and Keaton, and Logan, and Cullen, and Jana, and Lindsey, and Nick, and Dan, and Jessica, and Sammie, and Brian,and Emma,and Paul, and Zoe, and so many others that would make this too long to post if I named them all!? Yes, the Tucson shootings were a tragedy, but where was the horror and empathy, when so many of our precious children were taken? If the country can come together over these six victims, and vow to make a difference, where is that same resolve to eliminate the monster in our midst who is killing our kids? Why does the world not get all worked up over this most horrendous and unfair crime of all...the ripping from our arms of our precious sons and daughters? Sorry If I sound unsympathetic for the victims of the Tucson shooting..I do feel for their families, and know the little girl's parents are forever destroyed, but it just seems that the world outside of our "cancer land" is not aware at all of the unbelievable tragedy that is happening in this cruel land we were forced into.We need the president to break into the regular scheduled TV, and make a plea to the nation on behalf of the way too many children killed by this cancer monster every day. By the way, Mattie was playing with his duck, of course, and he wanted to make sure you guys know he is still around."
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