The Difficult Ways to Give Back

Today I sat on a panel of parents talking to nurses and social workers at Levine Children's Hospital to discuss transitions, mostly meaning from doctor's offices to the hospital, or from unit to unit within the hospital, or from surgery to the floor. We each had to tell our story with positive and negative experiences. I sat on a panel with two other mothers, their stories were ones of recovery, mine was not. My story was about a death after so many recurrences of cancer. I felt the overwhelming jealousy of how fortunate they were to have their child survive. I asked, why was I here?

Eventually I knew my position, I knew my purpose. I was the voice of teenage cancer patients. I was their advocate and could speak from experience. I had the perfect platform to make a difference. My voice stated meek and crackling but soon sounded strong as I felt the passion of wanting to give back. As difficult as it was it was perfect.

Decisions and What We Do

This weekend was all about decisions. After emptying the storage unit we had a late dinner with Tony and moved into a conversation of what has influenced our decisions during our lives. Mike I talked about our choice of college, moving for jobs, buying and selling homes. Tony talked about his search for a boarding school, how he was set on a school in the Northeast, but stepped back with the news of Joe not responding to his chemotherapy. He paused, and thought if I have a chance to go to McCallie and be with my brother I will.

So I don't know how we have been so fortunate to have three sons, who understood the meaning of making a decision, without talking, but knowing this is what you do to be there to support each other.

I am sure with other circumstances decisions would be different. You never know. But this is how is worked for our family, and we have felt the incredible strong support from every one that has crossed our path. Yes, decisions made in the moment can be powerful. As were Tony and David's.

His Buttons Would Be Bursting

There is nothing like a big brother. One that is so proud of his younger brothers, who took the time and energy to make sure they got it right, whether it be their academics or their sport, or maybe just living in the world. That was Joe from the time Tony and David were born. He took them under his wing and nurtured them with humor and loving care. Yes, there is nothing like a big bother.

And now we are on the road to college for the twins. One will most likely find a college that has the perfect curriculum and a place to dive, the other may attend a college overseas, pursuing his love for writing. Both will follow their passions and find their place. And the combination of us being willing to let them go, and with the past guidance of Joe,Tony and David will find their way with a comfortable feeling to achieve accomplishments way beyond their dreams. This is a wonderful, exciting time for Tony and David and Joe's buttons would be bursting with pride.

And So It Goes

The days run together, we adjust and re-arrange, moving this thing here and another thing there, but always coming back full circle to what is bothering us most, the loss of Joe.

I think the hardest part of a loss is sifting through their belongings. In Joe's case many of the possessions are from his childhood and adolescent years, most certainly there are not collections from his adulthood. But still they were his, and meant so much to him over the years. As much as we want to keep everything we are faced with the daunting task of what to hold on to and what to let go. And as we go through his clothes, his gifts from graduation, his notes from every class he attended and his books, oh yes his precious books with notes written in the margins of the pages and important quotes underlined, forces us to discuss every item in low quiet voices. Then we find something hidden in a box and a story may start with the clay turtle he made in sixth grade which then progresses to the pottery class he took at McCallie.

It becomes a time of laughter and tears and the joy of remembrance. A continuing celebration of Joe with us being on the exclusive invite list.

Paper work

Oh the drudgery of it all makes my stomach turn. A simple task of changing insurance companies becomes a monumental feat of defying the odds of faxes disappearing into black holes. You keep your fingers crossed that so-in-so with the perky voice will actually receive the information. But then there are the multiple phone numbers to call, every one to a different person with a specific responsibility. What ever in the world happened to one phone call, one piece of correspondence and an hour later your done.

So after sifting through all the calls, and I am holding my breath they received my fax, it will be worth it since I am saving a bundle with my new insurance company.