Forever a toddler: Grieving the independent child I’d dreamed of

“I can’t wait to be out of the diaper phase,” I remember thinking as we prepared to potty train our daughter, Liv, when she turned 2.

I think it’s natural for any parent to look forward to the next phase, even though the next phase always comes with a new set of challenges. Sometimes I long to go back in time when I seem to remember only the better parts of a previous phase — such as missing newborn cuddles while forgetting about the lack of sleep.

After Liv was diagnosed with Sanfilippo syndrome a few months after her second birthday, we realized she’d never be potty trained, and she’d never be able to complete any daily living tasks independently. That was a hard pill to swallow. The reality set in that we’d be “toddler parents” for the rest of Liv’s life.

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Liv and her dad the day before her diagnosis. (Photo by Erin Stoop)

Right after Liv’s diagnosis, I found myself in the break room at work, hearing other parents complain about things I’d give anything to have the opportunity to do with Liv, such as going to a soccer tournament or paying for music lessons. Instead, physical therapy and speech therapy would be our only upcoming activities. I found I preferred eating alone for a while after that.

Three years later, hearing those complaints still stings sometimes. I try to remember that a few months before Liv’s diagnosis, those complaints were our complaints, too. And just because our life took a large pivot doesn’t mean other people’s lives did, too. I attempt to meet friends and colleagues where they are.

I also try to focus on meeting Liv where she’s at, instead of dwelling on what could’ve been if she didn’t have Sanfilippo syndrome. That’s easier said than done, as just seeing a mom and her teenage daughter walk into the grocery store together holding hands can trigger a rush of emotions about what could have been. I often allow a single tear to roll down my cheek in those moments, grieving the mother-daughter relationship I’d dreamed of before her diagnosis.

Erin and Liv on Rare Disease Day 2025. (Photo by Erin Stoop)

One of the only silver linings is that Liv doesn’t know she has Sanfilippo syndrome, nor does she know the girl and woman I had envisioned her becoming. She knows only her current self.

Liv is happy most of the time, and simple things satisfy her. She loves being around her family. She loves FaceTiming with her grandparents, aunts, and uncles; this always brings out a smile and sometimes a few words. She loves to be held. In fact, she loves climbing onto your lap like a big puppy dog.

When I stop dwelling on what could have been and shift my focus to loving her as she is right now, her world is complete, and so is mine.

Whether you’re raising a neurotypical or neurodivergent child, always remember that this life they’re living is the only one they know. They won’t ever know the child you envisioned in your head before they entered this world or received a life-alerting diagnosis. Strive daily to fill their life with love and support.

That’s my daily goal with Liv, and while sometimes I veer off course and let my emotions get the best of me, I always try to circle back to where she is now.

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.