The Unseen

Ashley, my youngest daughter, has a genetic condition so rare it is still considered “incompatible with life.” Yet today, Ashley is twenty-five, and she hasn’t just survived. She rides horses and she competes in jazz dance recitals with her many friends with intellectual disabilities. When she gets a new dress, she twirls while modeling it for strangers, as if she is on Next Top Model. At age four, she made the front page of our local newspaper because she was so darned cute gritting her teeth as she pulled her walker toward the finish line in her first Special Olympics race. Surely, she is a great example of persevering.

And I have my own story of persevering–how I have managed to be there for my two daughters while battling my own chronic illness. Certainly, “persevering” describes how I completed my doctoral degree and a second master’s degree as a single parent, while working full-time and recovering from four surgeries within five years. I was so committed to not missing any of Ashley’s doctor’s visits that I once took her to an appointment while wearing a backpack contraption so I could do a tube feeding at the same time.

Yet Ashley’s and my stories are not my best examples of persevering. That distinction goes to Christina, my firstborn, who once washed my hair in the intensive care unit and then drove home to help bathe, feed, and console her sister. Ashley and I have selfish motivations for moving on with our lives, in that we benefit from our persistence. For Christina, there are only unselfish reasons for her being there for both of us. She could have walked away from these responsibilities, as her father/my husband and other family members have done, to make her own life easier. She not only didn’t abandon us, she inspired us by completing her undergraduate and master’s degrees and attaining her dream job as a public radio journalist. For fun, she has competed in four marathons.

Caregivers like Christina are the unseen examples of persevering. While Ashley gets shiny medals for winning races, and I often get unjustifiably martyred for being a single mother, Christina and others like her only get to clean up vomit and answer emergency phone calls in the night. Until now.

Shirley Phillips
Nashua, New Hampshire


1 thought on “The Unseen”

  1. Thank you for this story, Shirley. I am writing this comment during April 2020 of the COVID-19 pandemic, revisiting Pulse’s 2018 theme “persevering” as one way of finding inspiration at this time. I hope you and your family are staying well. Thinking of you.

Leave a Comment

Your email address will not be published. Required fields are marked *

Scroll to Top