Finding employment as a parent and caregiver feels as rare as Sanfilippo

Standing in front of my mirror, I fluffed my freshly curled hair. “Well,” I murmured, “let’s see how this goes.” I grabbed my bag and keys while calling for my daughter. It was time to drive her to school and get myself to work. Somehow, against all odds, I’d found a job.

When our son, Will, 13, was diagnosed with Sanfilippo syndrome in 2015, it threw every plan we had for our lives out the window. We had to quickly reorganize our time to prioritize medical appointments, therapies, and clinical trial travel. Of course, when something moves up on the priority list, it’s only natural that something else moves down. One victim of this reprioritizing was my career.

I was in the fourth year of my doctoral program in education when Sanfilippo entered our vocabulary. Previously, I’d been working as an adjunct psychology professor, waiting for a full-time position to become available.

The wait was long, and after being pregnant and having Will, I decided to change my focus to higher education administration in hopes of having more stable working hours. I applied and was accepted into my doctoral program when Will was just 6 months old. My plan was to stay at home with my son during the day and attend my graduate classes in the evening while he was a baby. I then hoped to get another part-time position when he entered preschool and transition to full-time work once he started kindergarten or first grade.

Instead, I found myself struggling to finish my doctorate while parenting a child with a devastating medical condition. Even when I did finish (thanks to the amazing support of my husband, my graduate cohort, and some dear friends), I had no plans to actually use my degree. How would I fit a job into the life I now had?

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Fulfilling my need to contribute

I’ve written before about coming to terms with giving up my career dreams. It’s a struggle that many parents in similar positions face because of the lack of childcare options and schedule flexibility. It feels like suitable employment opportunities are as rare as the conditions our children face — unicorns in their own right.

I’d at least been fortunate to find some fulfillment by using my talents and expertise as an advocate and board member for the Cure Sanfilippo Foundation and by writing this column for Sanfilippo News. I still missed being in the workforce, but how would I ever find a job flexible enough to accommodate the overflowing plates of responsibility I was already balancing as a parent and caregiver?

I still felt the need to contribute, and it was important to me to maintain my personal identity outside of caregiving and the rare disease space. I started volunteering at my daughter’s school and eventually joined the school’s advisory board. Even though my background was in higher education, I found that my experience in several areas was transferable and helpful. I felt useful. I was using a part of my brain that’d been neglected, and I loved it.

As the end of my term on the advisory board approached, I had mixed feelings. I would miss the work, but I also knew I was investing more into it than a volunteer role required. It was time to step back and continue to reprioritize, to find something else that helped fulfill my need to contribute. Or at least, that’s what I thought until the principal approached me, offering me a paid position as the campus communications coordinator.

“But I have Will’s appointments. And I have to put him on the bus in the morning and pick him up in the afternoon. I could only work part time, and even then it would have to be flexible, and I’d probably need to work from home quite a bit, and —”

“You’ve proven you can get the job done while working nontraditional hours,” the principal told me. “The job is yours if you want it.”

And I did want it.

I’m now several weeks into the school year. It’s been an adjustment as we find our new routine, but overall, it’s worked. I still get time with my boy in the morning before he goes to his school, and now I get to see my daughter during her lunch when I’m at work on her campus. My hours are flexible enough that I can adjust each week around Will’s appointments and therapies.

It’s validating to put on nice clothes, curl my hair, and go out into the world where my contributions are valued and appreciated. I’m still a parent and a caregiver first and foremost, but I’ve found my unicorn job, and I’m a better me because of it.

The author is grateful to have found flexible employment that allows her to continue to meet Will’s needs, including their morning breakfast dates! (Courtesy of Valerie Tharp Byers)

Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.