Claire

Posted on April 8, 2020

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She was born in 1996, into a life of privilege. This was not a privilege of affluence or entitlement. It was a privilege afforded by intelligence, education, culture, accomplishment. Luckily for her, her parents passed on something in addition, even more valuable, a belief that we are citizens of the world and the world is our responsibility. From birth, she was, in many ways, on the path to a productive, responsible life.

Two years later, that path would change. In their journey toward independence, toddlers can be opinionated, contrary, demanding. They can wreak havoc in their parents’ lives. The universe had other plans for Claire, causing another kind of havoc wreaking. Symptoms began and doctors were consulted. The verdict was an intrinsic brain stem glioma, in other words, a brain tumor. But no official diagnosis could be made. It would simply be too risky to do what they would have to do to make a true diagnosis.

And so on five mornings per week, for six weeks, while other toddlers were inspecting and attempt to master the world around them, she endured radiation to the brain stem. The tumor could not be removed, because of its location. Chemo was not an option at that time. The toddler who was born with unlimited possibilities was now faced with the terrifying possibility of having none.

At the time when other three-year-olds were starting preschool, some beginning to learn numbers, letters, simple words, she was learning how to survive. Six months after radiation, her tumor began to shrink.  She continued to get MRIs, initially every six months, then yearly, then every other year. To this day, her doctors can’t explain why her radiation was so successful. 

Then, while other teens were busy forming friendships and falling in and out of love, she began to experience weakness on the left side of her body. An MRI revealed a possible stroke. She had trouble walking. She was unable to use her left arm or hand. The doctors concluded it was a small brain bleed in the area that had been radiated all those years ago. She underwent a regimen of PT/OT. Her parents didn’t know whether the tumor had returned. Luckily, it hadn’t.

She entered the University of Delaware in 2014. Perhaps not surprisingly, she chose the Nursing program. When other college kids were falling in love and going on spring breaks, she did a summer internship at Children’s Hospital between her junior and senior year. She worked at an aboriginal hospital in Northern Australia for six weeks during her senior year. She was, after all, her parents’ daughter.

In 2018, she graduated and then passed her national licensing exam to get her RN. She started working at Johns Hopkins Hospital in Baltimore of October of that year. Her specialty was pediatrics, and she worked on the adolescent unit.

And then, Covid-19 arrived. Although she was on Pediatrics, nurses from other units were now “deployed” to the Covid floor to serve as safety officers and ensure the PPE is being donned and removed correctly, and check on safety protocols in general.

Her mother, who, along with her father, has always been a fierce advocate for changing the world, says that Claire continues to inspire and humble her to this day. She says that Claire is strong and resilient and her life has come full circle. She is deeply moved.

Claire still has some left side weakness, but, unless you looked for it, you probably wouldn’t notice. What you would notice was a young woman who believes that the world is about something other than herself. The toddler who fought for her life is now the woman who fights for the lives of others. 

Posted in: ordinary lives