I’m a wife and mom to a special needs child, but what defines me?

Remove my roles of pharmacist, wife, and a mom to two kids, and who am I? What else defines me?

This was the question presented to the parents of kids with Sanfilippo syndrome in a group therapy session recently. All the parents in the group have children with the terminal, neurodegenerative, genetic disorder. My daughter, Liv, is 6 and has Sanfilippo syndrome, and I have a 3-year-old son, Liam, who is unaffected.

Work and parenthood, especially in these early years, felt like they consumed me. Parent, work, parent, sleep, repeat. Put those aside and what’s left? I struggled immensely with that question. And months later, I still am unsure.

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Who am I, really?

In the group, we talked about writing our own obituaries, which, as morbid as that sounds, put a lot of things into perspective. What would I want mine to say? There’s no doubt in my mind that it would say “loving daughter, wife, and mother” and “Erin was a pharmacist who devoted her career to helping patients and being their advocate.” But what else?

I’ve dedicated the last four years since Liv’s diagnosis to fundraising, advocating for her, and learning about therapy options. That still falls under the parent umbrella to me.

Erin Stoop sports a “Saving Liv/Cure Sanfilippo” sweatshirt. (Courtesy of Erin Stoop]

I’d love to say that I have a really cool hobby. Nope — unless you can count exercising and cooking. When I finally have time to relax and breathe, nothing sounds better than bed. I am sound asleep most nights shortly after the kids are down.

I’d love to say that I am a great friend, but that’s one area in my life that needs improvement. I have a wonderful community of friends who would drop anything to come help me, but I’m not always the best at maintaining get-togethers. I prefer staying at home, an introvert at heart. Liv doesn’t play much with other kids anymore, so I find it hard to do play dates, as it leaves me feeling sad for her.

I’ve learned not to compare her to kids her age, but that’s easiest when it’s not right in front of my eyes. I also find it’s more difficult for our family to join in group settings, as we are constantly chasing Liv around. It’s difficult for me to establish and keep heartfelt conversations going.

I’d love to be a more engaged listener. To stop thinking about how someone else’s story relates to my life. Just listen. Don’t interrupt about how I can relate. Ask questions. Be engaged.

Aiming for better

The Stoop family at Christmas: from left, Liam, Erin, Tyler, and Liv.(Courtesy of Erin Stoop)

While being an engaged listener and friend wouldn’t define me, I do feel it would fill that “what else” do I do gap in my obituary. Aside from being a pharmacist, wife, and mom, I want to be known for being a great friend.

I fear setting up goals and being disappointed when I cannot achieve them — like failed a New Year’s resolution, every month of the year. But I also know that if I keep putting things off “until life settles down,” the years will fly by.

I am learning to find peace in my simple life, but I am also making a conscious effort to be a better listener and friend, remembering to leave space for grace. Parenthood, especially special needs parenting, is no walk in the park. Putting additional stress on myself to be an amazing version of me is not appropriate either. Balance, right?

I strive to be proud of myself for my core roles as a wife, mom, and pharmacist, and want to continue to grow outside those roles, to continue to develop what defines me.

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.