Advocacy in Action: How One Mom Navigates Complex Care

Written by: mejo, featuring caregiver insights from Jess Markins

When you meet Caroline, you see joy first.

Vibrant and expressive, with a love for High School Musical marathons and porch swing snuggles, Caroline radiates presence, even though she’s non-verbal. She communicates with eye gaze, with giggles, with a look that tells you she’s paying attention. But behind that joy is a rare and often invisible condition that’s shaped every part of her and her family’s world.

Caroline was diagnosed with congenital cytomegalovirus (CMV) shortly after birth—a virus that, despite being the most common infectious cause of birth defects in the U.S., remains widely unrecognized.

“I had never heard of CMV until it changed our lives,” Jess, Caroline’s mom, told us. Caroline’s diagnosis includes hearing loss, cerebral palsy, epilepsy, microcephaly, developmental delays, feeding and respiratory challenges, and more. Her needs are complex and ever-evolving. And yet, as Jess says:

“Despite all of this, she’s expressive, joyful, and deeply connected to the people who love her.”

The Diagnosis That Changed Everything

For Jess and her family, Caroline’s diagnosis was a seismic shift. It redefined not just routines, but values. It reshaped their understanding of time, love, and what really matters.

“It changed how we parent, how we plan, and even how we show up in the world. But it also gave us an entirely new perspective. Caroline has taught us what true strength looks like.”

Every milestone—no matter how small—is now a celebration.

The Realities of Complex Caregiving

Caregiving in this context isn’t part-time, and it isn’t predictable.

“It’s relentless and beautiful all at once,” Jess shared. “It’s grieving the vision you had for your child while fiercely fighting for the one you have.”

Jess spoke candidly about the daily grind: hospital parking lot tears, late-night insurance calls, the exhaustion of explaining complex needs again and again. But she also spoke about the soul-deep connection she has with Caroline—one that transcends words.

“Caroline may be non-verbal, but we understand each other on a soul-deep level.”

A Day in the Life

A typical day begins early, around 6 or 7 a.m., with meds and continuous G-tube feeds. From there, it’s a whirlwind of therapy sessions, care routines, equipment deliveries, and symptom tracking.

“There’s a lot of suctioning, repositioning, lifting—but also joy. Walks, favorite songs, family cuddles.”

Jess relies on systems like mejo to keep everything moving.

How Jess Uses mejo

“mejo has truly become my second brain.”

Jess uses the Premium version of mejo to track everything from seizure activity and venting to medications and formula intake. She stores key documents like care plans and specialist notes, and can access them instantly when needed most.

One moment that stands out? A recent ER visit:

“The intake nurse was overwhelmed by Caroline’s complex history. Instead of trying to remember everything, I just opened mejo and shared her med list, diagnoses, and hospitalizations. It saved time and made sure nothing was missed. It took a huge weight off my shoulders.”

Her favorite feature? The ability to share Caroline’s profile with others, like her husband.

“It gives me peace of mind knowing her story, her needs, and her quirks are all documented in one place.”

A Message to Other Families

When we asked Jess what she’d want to share with the broader mejo community, her answer was simple and powerful:

“You’re not alone. This life is heavy and beautiful and everything in between.”

She shares Caroline’s journey publicly to build awareness about CMV and to show the raw, unfiltered realities of caregiving. “We all deserve to feel seen.”

About Jess

Jess is a full-time caregiver, content creator, and advocate for families navigating congenital CMV and disability.

She has spoken with congressional staff to push for better education, screening, and support services for CMV, and uses her platform to spotlight the needs of medically complex children—and the resilience of the families who love them.

Join us in celebrating Jess and Caroline—two powerful forces reminding us that care, advocacy, and connection can move mountains.

If you’re a caregiver navigating this life, ,mejo is here to walk alongside you. Like Jess, you can use mejo to track treatments, share care plans, and stay ready—because caregiving should never mean going it alone.

Know someone who could use mejo? Share it with them. Explore mejo Premium or request a sponsored access code by emailing contact@mymejo.com

Sign up today!

—To learn more about CMV advocacy, follow Jess, @carolines_cmv_journey on Instagram and support awareness efforts for congenital cytomegalovirus.