Note: This is the winning essay from the Spring 2023 Johnson County Writing Contest
My daughter, JJ, has a rare progressive genetic disorder. It has taken away her ability to speak, walk on her own, or use her hands in a purposeful way. She also struggles with epilepsy, eats through a feeding tube, and has a visual impairment. Because of her multitude of medical issues, I come in contact with a great number of therapists and helpers. I interact with these people in a wide variety of settings—the most intimate of which is my own home. If I add up the amount of time JJ spends receiving behavioral therapy and personal care services, I come up with a total of fifty hours per week during which there is an outside professional working in our home.
The more time I spend with these people, the more I learn about their families, values, personalities, and life stories. The reverse also holds true. JJ’s helpers are privy to things like conversations with my husband, family celebrations, visits from relatives, and mealtime discussions. These people have seen it all. They’ve heard me talk on the phone to friends,
witnessed me in my sweaty gym clothes, and—on a few occasions—even watched me cry.
My relationship with my daughter’s caregivers is at once so intimate and so distant, it’s nearly impossible to describe. It’s almost as though the right word doesn’t exist. These helpers experience a side of my family no one else sees and leave their indelible mark upon our lives. But they are not my friends. I do not socialize with them or see them outside of work hours. They are paid professionals.
I first noticed the murky nature of these relationships when JJ began in-home behavioral therapy three years ago. It was the height of the pandemic, and my daughter’s problem behaviors were at their worst. She would scream, thrash, and bite herself for hours every day. Later, we learned this is common for children when they first begin to show signs of her syndrome.
The therapy company assigned us a one-one-one behavioral therapist for forty hours a week. This woman ended up staying with us for seven months, which meant she witnessed many of the big events in our family’s life during that time. She was there when JJ learned to walk at the age of two-and-a-half, when she developed epilepsy, and when she underwent emergency brain surgery on her third birthday.
But this woman wasn’t simply there. She made changes in our lives. Over time, she showed JJ how to take calming breaths and stop biting herself. She taught my daughter to walk by finding the right motivation—JJ’s outdoor water table. She rocked my girl in the hospital after her brain surgery and whispered “I love you” at the end of the day when she thought no one was listening.
Then, unexpectedly, we were told it was time for JJ to rotate to a new therapist. We said our goodbyes to this woman and never saw her again. I think of her often, even today. I like to imagine her out there—still working, helping children, and loving my daughter.
I cannot call this woman for a chat or pass on our family’s news because there are strict rules in place for our therapists. They cannot accept gifts over ten dollars. They are not allowed to be friends with us on Facebook. For two years after services end, they are forbidden to work for us in any way. Thankfully, for the personal care workers in our home, there are fewer rules. But we still have a professional relationship that involves creating a weekly schedule, clocking in and out, filing a W-2, and shaking hands on their last day of work.
Having these people in our lives has had a profound effect upon me and my family. While it’s easy for most people to see JJ’s disabilities and struggles as tragedies, this is all in a day’s work for her helpers and therapists. Every day they come prepared to battle her setbacks and celebrate her milestones. The steps JJ takes, the moments when she grasps an object, the buttons she pushes on her eye-gaze device—none of these things would have happened without the people who work with her.
As an added bonus, many of them end up falling in love with JJ. My daughter has a knack for making this happen. There’s something about her sweet smile and the way she bounces back from everything her disease throws at her that inspires great affection. Her first therapist was not the only one to make a confession of love.
Most people assume that having therapists and helpers in our home is the hard part of all this, but it’s not. Instead, the difficulty lies in getting to know these people—coming to like, respect, trust, and admire them—and then having to say goodbye. Some of them will stay in our lives, but many will not. Like the first woman we welcomed into our home, most will move on to help other people. Only their legacy will remain.
My family has been through so much since the onset of JJ’s symptoms. We have experienced ups and downs, advancements and setbacks, sudden gains and devastating losses. Part of this roller-coaster ride now consists of the kind souls who enter and exit our lives on a regular basis.
This cycle of helpers isn’t likely to end anytime soon. It will always be something we rely on and benefit from. It will also continue to be a source of loss and sadness. This blend of joy and grief is a feeling we know well. At this point, it’s woven into the fabric of our existence. It’s life with JJ. It’s life with her disease.
Or maybe, it’s just life.
Do you have any experience with blurred lines and murky relationships? What are the good and the bad? Let me know in the comments below.