Wednesday, October 10, 2012

Wednesday, October 10, 2012

Tonight's picture was taken in October of 2008. What I immediately notice in this picture was the bag of potato chips on the bed. Mattie went through various food phases at the hospital. There was the vanilla frosted donut phase, the mac and cheese phase, the potato chip phase, the vanilla shake phase, and of course the cupcake phase. Also notice the keyboard in this photo. This keyboard was given to Mattie by the "Piano Man." The Piano Man was a volunteer in the hospital, and his real name is Jerry. Each week Jerry and Nancy would visit the pediatric units and actually come into each patient room and try to entertain the kids and their families. I remember Jerry and Nancy were the first hospital volunteers we met during Mattie's very first week at the hospital. Back then, I was shell shocked over living in a hospital, absorbing the fact that Mattie had cancer, and trying to wrap my head around chemotherapy and its side effects. This is the emotional context behind how we met Jerry and Nancy. In fact, I still recall the song Jerry and I sang together that first night in Mattie's PICU room. The song was entitled, Swinging on a star, made famous in the Bing Crosby movie, Going my way (http://www.youtube.com/watch?v=iTUKHMlbYGA)! Mattie was intrigued by the song, by our banter, and of course with music. Their visit to our room, allowed us about 30 minutes of respite and took our minds off of our horrific reality. Jerry and Nancy instantly took a liking to Mattie, and they developed a game with Mattie called "name that tune" which he absolutely LOVED. What Mattie did not know was that Jerry and I would email each other days before the game to develop an approved list of songs. Songs that I knew Mattie could easily identify! Needless to say, Mattie ALWAYS won "name that tune." Funny how seeing a picture of this keyboard can transport me right back to the first week of chemotherapy.

Quote of the day: Love leads us into mystery where no one can say what comes next, or how, or why. ~ Caryn Mirriam-Goldbert


Love is indeed a mystery. It is hard to say what attracts us to certain people. I am not only talking about the selection of a significant other, but also in the choices we make within our friendships. Love is multi-faceted and there are so many forms of love. Sometimes we can give our hearts to the wrong people and this certainly is a painful lesson that embitters us to the notion of love, or allowing one's self to love in the same way again.

Loving one's child is less of a mystery in a way. It seems to be a biological given (certainly I am aware of the fact that there are circumstances when children are born in which a parent is incapable of love, clearly I am not talking about these instances), as if an involuntary switch is turned on within you to care, protect, and love this little being. However, as the quote implies, with any kind of love, one never knows what will come "next, how, or why!" Certainly in Mattie's case, I would never in a million years guess a child who was born healthy would develop cancer six years later, and within 14 months die. In a sense this makes love an even bigger mystery to me. Why are some parents allowed a lifetime of love to explore this mystery, and we were only allotted 7 years? I realize there is NO answer, or at least one I want to hear, that could justify being given a finite amount of love.

Though Mattie isn't physically with us, his love still exists. For me it now exists in more indirect ways through a blog, a Foundation, a Foundation newsletter, and in our events. I realize all these things are of value and I appreciate the feedback I get from my readers, but I have to admit it is very difficult not experiencing the two way love I had grown accustomed to for seven years of Mattie's life. This lack of love does leave a huge chasm in one's heart and life, which is hard to fill at times.

It is funny, I sat down yesterday while writing the blog and realized we were in the month of October. Months are a big blur to me now! When Mattie was in my life, I had a solid feeling for time and seasons. Now these markers aren't as important. In fact the other day, I passed a place selling all sorts of pumpkins. Actually you can't help but also see pumpkins being sold in the grocery store! Yet even the sight of these colorful orange orbs didn't register with me. Perhaps my mind doesn't want to register the fact that yet another Halloween is approaching!

A friend told me the other day that she is hoping at some point all of this will get easier for Peter and I. I too would like that to happen, but I don't sense that is possible. The challenge is finding a way to balance these feelings of loss and at the same time not disengage from living and others. A rather tall order indeed.