Tuesday, July 9, 2013

Land of the Free, Home of the Brave.

Four years ago, July 4th, I got up really early. It wasn't for an early morning medication dose. It wasn't for an episode of vomiting or to administer formula via g-tube. It was to make a few dozen red, white and blue sprinkled cupcakes. Not only were we celebrating America's independence- we were celebrating Lily's independence from the chemo beast. No more stopping every few hours to mash up mitotane in a special designated mortar and pestle and carefully balance the formula to powder ratio as to not clog the g-tube. No more weekly clinic visits to flush the port and check bloodwork. No more nausea, anorexia, alopecia, emesis, or neutropenia. As Lily helped put tiny flags on each cupcake she vibrated with excitement. Still refusing to wear clothes, she sampled the goods as much as she helped.  It was a day about her. In her 4 year old world- that was all that mattered- she got a party. The promise of that party helped through some icky spots. To honor her Bravery through battle.  To the rest of us it was a new beginning. Like the first colonists- we were picking up the remnants of our lives before cancer and carrying on in a new place. A place that would never be left untouched by cancer- but would always hold the possibility and hope of remaining cancer free.

At the time, I thought it would be a great tradition- to celebrate this big accomplishment each year. Yet as time goes on- sometimes you need just that- to move on. A celebration would be more of a reminder of the tough times. I think the other 3 kids needed to move past the celebration of Lily and be part of a family unit- to not exist on the sidelines of a sibling with cancer. Because in their world- they choose to not see the alopecia and the emesis and we shielded them a lot- but they fixate on the presents and the special way Lily was treated because she was sick. As a parent, you always try to find the balance. You want to somehow create the illusion of fair in these crazy cancer infested waters of crappy genetics. Yet you can't predict when or where the little soldiers might be wounded. You recognize different children have different strengths and as we tell them- we don't love them all the same- we love them all because they are different. The year after chemo, you are picking up pieces of normal and trying to fit them into a new home. The home is a different place than it used to be- so not everything fits. You are being chased by the shadow of cancer- with more frequent checkups than a normal person while reveling in the lighter schedule than you were accustomed to. The next year presented a new battlefield, an unexpected one- the summer of diabetes and again our family force was split as we tried to manage a new medical challenge that presented itself- there were fireworks but not together. The following year- we returned to the cancer battlefield- fortunately not in Lily or any of the kids. A new type of bravery was required on my part. As the old adage goes- you don't know how strong you can be until strong is your only choice. The challenge- being the sick one. I didn't like the role- so we packed our bags and resumed our hectic schedule. We kept on marching through this year- a quiet night at home- no fireworks- just a barbeque- painting some tshirts and doing nothing. And although there was a bit of griping from the peanut gallery- they are easily entertained with water balloons, glow in the dark balloons, ice cream and the promise of fireworks another night.  For Phil and I, the normal nothingness is what we needed. The lack of pyromaniacal danger was necessary. Sometimes you learn the greatest celebration is in doing normal. There are times when the distraction of creating and organizing a celebration is needed for morale and for unity. Other times the down time is what is needed most- laughing over dinner or a silly television show or  just acting silly together. There are times when normal IS the celebration. Those are the moments I find I cherish the most. They are authentic and pure. They may not be fancy, but they are free!

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)