Behind the Smiles: The Hidden Strain of Parenting Through Medical Uncertainty

This week has been a rollercoaster, and today I’m opening up with one of the most raw posts I’ve ever written. Normally, I lean toward a pragmatic, restrained tone in my writing—not to diminish my own experiences but to respect the complexity of others’ journeys. But I’m learning that always holding it together can wear you down, building stress in ways that are sometimes invisible until they’re overwhelming. So, today’s post is a bit different. I came here planning to share practical insights on hypoglycemia and the risks it poses for children with growth disorders, but what I really need to share is what it's like to shoulder the hidden weight of caring for a child with complex medical needs.

After months of consulting different specialists for Averley, we had finally reached the moment we’d pinned our hopes on: seeing the gastroenterologist. This was our chance for answers, maybe even an intervention. After a promising month of stability and a small weight gain, I felt sure they would recommend a g-tube. But that wasn’t the case. Instead, we left the appointment with a familiar prescription: “wait and see.” I agree that intervening while she's stable might not be necessary, but waiting has never been on our side. Every "wait and see" has led to illness, and now I’m caught between hope and dread, feeling defeated and unsure of what comes next.

My trusted GP reassured me that as summer nears, with her immune system getting stronger, she’ll likely stay healthy. But my nerves remain frayed, constantly on edge. I feel as if I’m always waiting for the other shoe to drop, wondering if I’m being overly anxious—or if I’m the only one who can see how fragile this balance truly is.

Then, Tuesday evening, it happened: she started vomiting. In the beginning, it seemed manageable, but by Wednesday morning, her condition had worsened dramatically. She was pale, limp, her eyes rolling back—a sight no parent should have to witness. Instinct took over, and we followed our emergency protocol, rushing her to the hospital. Her blood sugar was dangerously low, and while she stabilized after a long day of tests, I was left to confront the trauma of “wait and see” yet again.

As the week wore on, my husband and I found ourselves in an endless loop of worry and “what ifs.” Conversations cycled around the same questions: who could help us? Where do we turn next? It’s exhausting when each path feels like it leads back to the same uncertain place.

Then came another call from childcare on Monday. She was “looking a little off.” This time, instead of stopping to check, I raced her straight to the doctor, who urged me to keep going to the hospital. Once there, however, I encountered the familiar challenges of dealing with a rare condition. Despite my pleas to consult her specialists, we weren’t taken seriously. I ended up trusting my instincts and took her home, hoping it was the right decision. Thankfully, she bounced back, but I know we’re just circling back to the beginning of this journey.

The highs and lows of this cycle take a toll that words can barely capture. I know I’m experiencing caregiver burnout; my body feels the strain of prolonged stress, and my mind is constantly on high alert. Everyone tells me how well I’m handling it, and while I’m grateful for those kind words, it’s precarious. Burnout is real, and I’m slowly learning to be kinder to myself, to recognize that I need help too.

As spring unfolds, I’m clinging to the hope that change is coming, that this cycle won’t last forever. The moments of joy—the way her little smile lights up even the darkest days—keep me going. And maybe this rollercoaster week will bring about changes that we need. For now, I’m taking things one day at a time, trying to hold onto the silver lining that, perhaps, this season will bring us something new.