From the Caregiver's HAErt – a Column by Danita LaShelle Jones

The Peculiar Misunderstanding of Layman Experts

“Oh, I had that,” said the woman on the other end of the phone line. I had to cancel a meeting I had scheduled because my oldest daughter, whom we fondly refer to as Ladybug, was having a flare that would eventually lead to hospitalization. Although I couldn’t see the…

Not Majoring in Minor Health Moments

The familiar number flashed across my phone screen, and I audibly groaned. After a particularly arduous morning dealing with late school buses, forgotten lunches, and a few involved errands, I had finally reached a moment where everything settled. Yet the sound of my phone vibrating against the table yanked me…

I Get By With a Little Help From My Friends

I stared down at the incoming text message and completely froze. The beeps from her monitor in the pediatric intensive care unit (PICU) had finally settled into a consistent rhythm. Although our oldest daughter, whom we lovingly refer to as Ladybug, was resting, my adrenaline was still pumping from the…

Because the Other Kids Get Sick, Too

I haplessly fell backward on my bed, blew a sharp breath out of my mouth, and stared at the ceiling. We had made it to the middle of the week without any incidents with my oldest daughter, nicknamed Ladybug. We hadn’t needed to make a trip to see the pediatrician,…

The Stressful Case of the School Absences

I sat in my idle car and drummed my thumbs on the steering wheel. Another glance at the clock revealed that it was 10:57 a.m. I had three minutes left before it counted as a full day. Part of me hoped that I wouldn’t be noticed by a security guard…

How I Stopped Forgetting to Remember

After a losing battle trying to find a comfortable sleeping position, I sat up in bed, maneuvered my laptop around my large, pregnant belly, and started Googling “tips on having twins.” By hour two, I had a wealth of information, mostly from reputable websites about babies and parenting. But my…

Coming to Terms With Caregiver’s Guilt

By the time my husband and I added a set of twins to our already rambunctious 5- and 2-year-old, family and friends appropriately named our house “the Circus.” Sure, there were families out there with way more kids than we had, but our reality was what mattered. Everything seemed to…

The Hospital Tip That Took Me Too Long to Learn

There I was again, speaking with hushed tones into my cellphone as I talked my husband through the tangled wires I knew he was digging into on my side of the bed. “What else do you need, babe?” he asked patiently. I rubbed my forehead as I peeked over at…

We Forgot to Tell Our Daughter About Her Diagnosis

In retrospect, I took a lot for granted. My 12-year-old daughter, whom we affectionally refer to as Ladybug, has probably seen more doctors than the average child her age. Although her visits started with the discovery of a rare allergy to spinach, finding out she has hereditary angioedema, or HAE,…