I hadn’t anticipated being a stay-at-home mom, but it works for us

I used to be a career-driven woman. I graduated from pharmacy school in 2011, worked retail pharmacy for four years, then transitioned to a hospital setting and completed a post-graduation pharmacy residency.

In 2019, when I became a mother eight years into my career, I envisioned myself as being a working mom forever. I love being a pharmacist. I love helping people. My days pass quickly that way, plus I want to contribute to our family’s income. My mom was a full-time working mother for 35 years at the same company. My dad also kept his job for my entire life. I envisioned myself finding a similar career path and sticking with it, too.

That vision came to a halt in 2022, when our daughter, Liv, was diagnosed with Sanfilippo syndrome, a fatal neurodegenerative disorder. Sanfilippo syndrome made our daughter’s life as well as ours considerably harder. All of Liv’s appointments and therapy sessions made working full time difficult. Plus, she no longer qualified for after-school programs because she’s not potty-trained. And if a clinical trial ever became available, we’d likely have to travel every week.

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I was 35 weeks pregnant with our son, Liam, when we received Liv’s diagnosis. After my maternity leave, I returned to work. Shortly afterward, I applied for a different job at my hospital that required 33 hours a week instead of 40. That helped a little, but things were still challenging. My husband, Tyler, also travels for work, and our other closest family members were two hours away. We knew it was a situation we wouldn’t be able to continue for long. I needed to step even further back at work to part time.

Erin and Liv have a playful moment together prior to Liv’s diagnosis of Sanfilippo syndrome. (Courtesy of Erin Stoop)

So we sat down and crunched the numbers. We made an appointment with a financial planner to see how it would work for us. We knew it had to happen, but my husband and I were both scared. I had to pivot from my original plan, the vision of what I thought my career would look like, and shift to a new one: I’d become a stay-at-home mom.

I had many questions, though: Can I do this? Will I go crazy? What if I’m lonely in my own home? Can we make enough money to support this over the long term?

Liv’s diagnosis of Sanfilippo type B is terminal, but life expectancy ranges anywhere from 12 to 26 years. Some kids live well into their 20s. I’m a planner, but we had officially entered a chapter of our lives that couldn’t be planned.

Last fall, I was able to transition to working at the hospital just one day a week. For the indefinite future, I’ll be at home with Liv six days a week. I’m grateful my employer made that possible for me. The arrangement allows me to get out of the house for a day, focus on my career, earn a small income, and have a little break from being a mom and a caregiver.

I’ve been doing this for nine months, and I can confidently say that it was best decision for our family. I now know I can handle being a full-time stay-at-home mom if it becomes necessary in the future.

Our mornings are less rushed now, and I find myself smiling a lot more. This is precious time with our kids — Liv is 5, and Liam is 3 — I know I can’t get back.

I’ve told my husband countless times that “I’m so glad I’m not working today.” Could I get a job that’s a bit more flexible? Sure, but nothing compares to the freedom of being 100% there for Liv and the rest of our family. If Liv is sick one day, I’m there for her. Snow day? No problem. Multiple doctor appointments? I can take her. It’s worth it for us on every level.

I understand that not every family can survive on only one income after receiving a diagnosis like this. But I hope that my story reassures parents who are in a similar situation. In my case, it was one of the best decisions I’ve ever made, and I’d do it again in a heartbeat.

The Stoop family, from left, Liv, Erin, Tyler, and Liam, enjoys a vacation in June. (Courtesy of Stoop Images)

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.