A Mother’s Journey

There’s something about being responsible for another human being’s life that forces you to grow up quickly. Most parents would probably agree.

For me, the journey to Kenzie’s diagnosis was an awkward, sometimes overwhelming, crash course into maturity. I felt ill-equipped to handle the weight of keeping her alive and well. Every decision seemed monumental, and I was terrified of making a mistake. Looking back, none of my decisions truly held life-or-death consequences, but when you’re in the middle of a health crisis, it certainly feels that way.

This was unlike anything I had ever faced, and I felt completely alone navigating it. Raising a child with an autoimmune disease can feel incredibly isolating. While there’s a community of others out there who share similar struggles, they often feel out of reach—and even hearing their stories doesn’t always make you feel better.

So here’s our story. It may not be the worst out there, but it’s ours.

We first realized something was wrong when Kenzie didn’t stop limping.

Each night, it was the same pattern: Kenzie seemed fine after daycare, but by evening, she’d start limping. When it became clear this wasn’t going away, I scheduled a doctor’s appointment.

You can read about the first time we noticed our daughter limping in the blog post linked here.

Our pediatrician quickly noticed how much Kenzie was favoring her leg. We started with a process of elimination: first an X-ray, then bloodwork. When the X-ray ruled out a break, we moved on to the blood tests.

That’s when the doctor told me Kenzie needed to be admitted for observation.

When I found out that Kenzie would be admitted, we quickly had a whirlwind on our hands. Having no idea how long we would be admitted, I was juggling my teaching job, making new living arrangements for my three-year-old while my husband and I were gone, and now navigating this medical uncertainty. Things happened quickly and I was an emotional basketcase.

At the Hospital

While at the hospital, Kenzie endured endless tests—more bloodwork, exams, and an MRI. The results revealed significant inflammation around her right ankle. Despite this, we left the hospital after a few days with no clear answers. Some doctors thought it was just cramping since her limping wasn’t consistent, but the MRI suggested otherwise.

After 3 long days and no real answers, we were referred to a local pediatric orthopedic specialist and scheduled an appointment for the next day.

The First Time Juvenile Diagnosis Was Spoken Out Loud

Waking up in my own bed, I wondered what this day would bring. One thing I wanted so badly was some sort of answer. I felt like we were being passed back and forth between different doctors and specialist answering all the same kind of questions but only being met with more questions than answers. As more and more tests were required, one thing was clear-my daughter was not limping as a result of a simple cause. Everything was complicated and the road to nowhere felt like a real destination.

“Please Lord,” I begged, “Can we have some sort of answer today?”

It’s strange to look back and reflect on all those small moments—a simple prayer asking for answers. Deep down, even then, I sensed where this journey was heading. But when the answer to your prayer finally arrives, it can feel surreal. What I didn’t realize at the time was that finding the answer wouldn’t solve everything. Instead, it brought more questions and challenges than I could have anticipated.

While driving to the appointment, I received a call from the orthepedic specialist.

“Hi, Mrs. Spiess. I’m calling to cancel your appointment with me today,” the doctor said.

“Why?” I replied, confused.

“I don’t want to waste your time. Based on the medical tests, I believe your daughter has juvenile arthritis.”

“…I believe your daughter has juvenile arthritis…”

There it was. The diagnosis I’d quietly feared, now spoken aloud for the first time.

“Oh? We weren’t told anything at the hospital,” I said, trying to process this information.

“There’s significant inflammation around Kenzie’s ankle joint. I recommend you see a rheumatologist,” he explained.

“Can you look at her anyway?” I asked. “I just want to rule out as much as possible.”

“Yes, that’s fine,” he agreed. “But I really doubt I will be able to help you today.”

Two Hours Later

Two hours later, we left the orthopedic office with confirmation that Kenzie didn’t have an injury. While I was relieved to rule something out, my heart remained heavy. The unresolved questions, the uncertainty—they weighed on me, along with an overwhelming sense of mom guilt.

“God! I just want an answer!” I yelled out in my car in my frustration.

“I gave you one.”

Stopped to a silence, after hearing that still, small voice, I sat there in my car crying, knowing once again where this was all leading. Although I didn’t like the answer, it didn’t mean the Lord didn’t give one.

When the Phone Rings

The next day, I returned to work for the first time in a week, and Kenzie went back to daycare. It felt so strange not having a clear explanation for why I’d been gone so long. Everyone wanted to know why my daughter had been admitted to the hospital, and I hated admitting that I didn’t really know what was going on. After a long and stressful morning trying to settle back into routine, it wasn’t long before my phone rang…

“Hi, Andrea,” our pediatrician began. “After reviewing Kenzie’s test results, I’m referring her to Riley Rheumatology. The inflammation around her ankle leads me to believe that’s where she needs to be.”

“OK,” I replied, my voice steady despite the fear creeping in. “What do I do now?”…