The Backstory 

It was June, 2024 and I had just been thrust into the role of “caregiver.” My daughter, Emmy, was born the previous November, and from the day she was born, there were questions and concerns regarding her feeding and development. 

I was working as the director of a disability and inclusion ministry and had registered for The Institute on Theology and Disability in Boston, but when it came time to get on the airplane, I panicked. The thought of leaving my daughter, as her primary caregiver, felt overwhelming. So, on the way to the airport – literally, on the way- I picked up a stroller from Facebook Marketplace and borrowed my in-law’s pack-and-play. At just over six months old, my daughter joined me on her first flight. 

I hadn’t asked anyone if she could come. She was an “easy” baby for the most part, but a baby nonetheless, and babies, I thought in this context, would be a distraction. This was a prestigious conference, after all, and one I had been professionally pining to attend for years. Now that I finally got the chance, was I going to “ruin” it by bringing an infant? What would the people around me think? Would they accept me? Would they accept her? 

Emmy, at that time, didn’t yet have a formal diagnosis of any sort (a CP diagnosis and g-tube would come later), but as a mom and a clinician, I knew. So, on the one hand, this conference was for me professionally – as an ally and advocate for disabled folks. But looking back now, the majority of my most remarkable memories are a series of otherwise seemingly miniscule moments that have vastly shaped me as a parent and caregiver. 

The Moment

The first prompt of the breakout session was this: “Imagine your ideal church. What would it look like? What or who would it include?” 

Within a matter of mere seconds, I had my answer. 

My ideal church, I thought to myself, would be one where kids roamed freely through the pews and up and down the aisles. Where my neighbor’s kids came to eat our Goldfish crackers. Where my kids went down the aisle to sit on an auntie’s lap because she had Play-Dough and mom said no. Where my son could build Legos under the wooden bench seat and I didn’t feel that I had to keep him quiet – a tricky task when he’s wearing headphones and can’t hear the noise the tiny plastic bricks are making as they hit the hardwood floor below him. 

But just as quickly as my daydreaming had begun, it was promptly interrupted by, you guessed it, the fussing of my daughter. 

She was tired (and so was I), and getting her to fall asleep comfortably typically required lots of rocking and swaying (we know now she was likely in pain due to spasticity and reflux). 

I was worried if I initiated the “go-to-sleep dance” we typically did, I’d be distracting the folks around me. So there I sat, silently debating whether to stay in the session and “cause a ruckus” or step out to the hallway and miss something I knew I would have loved to hear. 

But then, without missing a beat, Jasmine turned around and asked to hold Emmy. 

She put my daughter on her lap and quietly began singing a German nursery rhyme while gently rolling backward and forward, sitting on her anterior walker. 

I still don’t know the words to the song, but I’ll never forget the moment. 

Jasmine had no idea what I’d been thinking of. She surely couldn’t have known that, at that exact moment, she was entering into a space in which I’d felt alone for nearly seven months. 

But I did. 

And as I sat behind her, I wept. 

My daughter fell asleep, and I got to rest. 

I can’t tell you another single thing the speaker said in that session (my apologies to whoever he was; I’m sure the remainder of the presentation was lovely), because at that moment, through wheels and lyrics unknown and by way of the kindness of a stranger, I’d “heard” all I’d needed to. 

I felt seen and cared for in a way I desperately needed but hadn’t yet articulated. 

At that moment, I could finally exhale, because someone else had come alongside me as I tried to walk the wobbly tightrope that is balancing being a caregiver and a working professional. 

In that exact moment, the Lord offered renewal and rest to my weary soul. 

The Moment After the Moment

That evening, Emmy and I joined some other conference attendees out for dinner. Afterward, several of us returned to our dormitory to hang out and play games. 

I put Emmy to bed, Uber Eats delivered me a bottle of wine (that I had to pick up down the street because they wouldn’t deliver to the college campus– so I guess I smuggled myself some wine…?), and joined the group. 

We’d also gotten an ice cream cake earlier that night for someone’s birthday, so we brought it back to celebrate, too. 

One minor problem: we hadn’t gotten any dinnerware. 

No silverware to cut the cake. No cups to share the wine. No plates to hold our bounty. 

Have no fear. As disabled folks often do, we found a way. 

We cut that cake with the smooth edge of a piece of cardboard we’d ripped from its box, ate it with our hands, and passed the single bottle of wine around the table. 

My disabled friends shared stories from their lived experiences that had me trying my damndest not to spray wine out of my nose while simultaneously deeply shaping me as a parent of a disabled kid (e.g., how will we make sure Emmy can still participate with her peers when she’s older if there is a party with alcohol and she still has a g-tube?).

I’d watched all week as these same adults – speakers and scholars alike – brought their disabled bodies down to the ground, literally, to welcome my daughter, and in doing so, welcomed me. 

This mostly melted ice cream cake, eaten with bare hands, and pass-the-bottle-wine was the holiest of communions I’ve ever experienced. 

The Afterstory

Since attending ITD in 2024, I’ve left my job in vocational ministry and started a nonprofit for caregivers, providing the kind of tangible support I wished I’d had when Emmy was young. 

We’ve also joined a new church, one where I watched a compassionate and humble leader – our female pastor – take an actual sledgehammer to a church pew in order to make space for children in worship, both metaphorically and literally, and where disabled folks are an integral part of all aspects of the life of the church. 

I can’t count the number of times I’ve cried in the back of this new-to-us sanctuary, knowing my kids will get to grow up in a place that sees them and celebrates them wholly – disabilities and all.

Megann Whitaker Fleming is a speech-language pathologist, turned vocational minister, turned nonprofit director. She spends her days doing her best to care for her neighbors in caregiving through the work of her nonprofit, Connected Caregivers.

Megann is a mom to two disabled children and a former foster parent. She is married to her best friend, Zach, and together, they’re building the life of their dreams in Columbia, MO.