Navigating Scoliosis as a Parent: What We Learned
Both of my kids were diagnosed with scoliosis. Here's what we learned about advocacy, research, and finding the right care — and why I built a website about it.
When your child gets a medical diagnosis, your world narrows to a single point: what do we do now?
When it happens with your second child too, you realize you need to become an expert.
Two Kids, One Diagnosis
Both Chloe and Ferrell Jr. were diagnosed with scoliosis. Different curves, different treatments, different journeys — but the same terrifying initial phone calls. The same late-night Google rabbit holes. The same feeling of "I need to understand this better than I do right now."
Becoming Your Child's Advocate
Here's what 25 years of debugging software taught me about navigating a medical system:
- Get multiple opinions. The first doctor's recommendation isn't always the best fit.
- Document everything. I kept spreadsheets of appointments, measurements, and questions. Yes, I'm that parent.
- Ask "why" relentlessly. Don't accept "that's how we do it" as an answer.
- Connect with other families. The scoliosis community is incredibly supportive and generous with knowledge.
Why I Built Chloeosis.com
After going through Chloe's journey, I realized other parents were Googling the same questions at 2 AM. So I did what developers do — I built something.
Chloeosis.com documents Chloe's scoliosis journey: the diagnosis, the decision-making, the treatment, and the recovery. It's not medical advice — it's one family's story, told honestly.
If it helps even one parent feel less alone at 2 AM, it was worth building.
What I'd Tell Other Parents
- It's not your fault. Scoliosis is not caused by heavy backpacks or bad posture.
- Your kid is tougher than you think. Both of mine amazed me with their resilience.
- Take care of yourself too. You can't advocate for your child if you're running on empty.
- It gets better. The fear of the unknown is worse than the reality.
The Tech Dad Angle
I'll admit it — I approached this partly like a project. Research, planning, execution, iteration. And honestly? Those skills transferred. Being systematic about medical care isn't cold — it's thorough.
But the most important thing wasn't the spreadsheets. It was being there. Holding hands before X-rays. Celebrating small victories. Letting them see that it's okay to be scared, and it's okay to push through anyway.
That's a lesson no framework can teach you.