As a mother, I’ve always rocked my babies to sleep. Those moments were some of my most cherished. When Kenzie was a baby, I rocked her every night—until she was three. I know that’s not what the parenting books recommend, but quite honestly, I don’t think there’s a book out there that teaches you how to be a mother to a child with an autoimmune disease. At least, not yet.

I’ll never forget a conversation I had with Kenzie’s pediatrician—one that changed everything for me.

“If you close your eyes and hear hooves, what animal do you picture?” the doctor asked.

“A horse,” I answered.

“Exactly. That’s what everyone assumes. But a child with an autoimmune disease is a zebra. Your daughter is a zebra.”

“Your daughter is a zebra.”

That realization hit me hard. From that moment on, I knew my expectations had to shift. The way I saw my daughter had to change. And the version of motherhood I had once envisioned? That had to die.

So for three years, I rocked my child and I prayed. Every night, I played songs about God’s goodness and promises, whispering prayers as I held her close. I begged the Lord to heal her, to take her pain away—to give it to me instead, as if suffering could be traded. I wrestled with so many “why” questions. Some nights, my prayers were desperate and defiant, ones I’m not proud of. I was angry. I was hurting. And I blamed God for all of it.

Then, Kenzie started requesting a particular song. She was only speaking in short phrases at the time, but it was clear what she wanted:

“Lion song, Mommy. Lion song. Roar.”

The lyrics spoke of trusting God to walk us through the fire, to shut the mouths of lions, to do what He is famous for. At the time, I thought it was just a reminder that He could give us peace in our circumstances-which is true. However, never in my wildest dreams did I imagine that a supernatural miracle was on its way just 2.5 years later. I had no idea that as Kenzie and I worshipped together, we were declaring God’s power over our circumstances. I didn’t realize that one day, His hand would actually move to silence the lion. I didn’t fully grasp that I was worshipping a God who not only could heal—but would.

Part 3: A Diagnosis & a Treatment Plan

When we headed to Riley for the first time, I was a nervous wreck. I didn’t know what to expect, and driving over two hours for a doctor’s appointment felt strange, to say the least. The long drive made the situation even more difficult because it gave me too much time to think.

Lost in my thoughts, I drifted into the “what-ifs.” I prayed a lot, but my prayers were scattered and desperate. They often sounded like, “Lord, please give us answers,” “Lord, please stop my child from limping,” and sometimes even, “Lord, why are you doing this to us?” 

“For God hath not given us the spirit of fear, but of power and of love and of a sound mind.” -2 Timothy 1:7

I never felt peace—and that was the worst part. I think it was because I expected God to fail me. I know that sounds horrible, but back then, my faith was fragile. While I loved the Lord, I didn’t truly know Him. Not like I do now. Don’t get me wrong—I prayed a lot, went to church regularly, and even occasionally read the Bible. Ha! But how many of you know that you can talk to someone every day and still not really know them? That was my relationship with God. Because I didn’t fully understand His promises, I missed out on the peace He offers during life’s storms.

Maybe I’m being a little hard on myself, but I truly wish I had known then what I know now. I wish I had leaned on God’s promises and been firmly rooted in His Word. But I wasn’t, and that made an already difficult situation even harder.

“Peace I leave with you; my peace I give you. Do not let your hearts be troubled and do not be afraid.” -John 14:27

Riley Rheumatology

When we finally arrived at the appointment, we had to walk past children with blood diseases hooked up to IV’s, missing their hair, and looking tired and frail. It was both humbling and heartbreaking. Children are supposed to be energetic and full of life, so seeing them in such a state weighed heavily on my heart. Suddenly, having a child who limped didn’t seem as devastating.

We settled into the waiting area and were called back shortly after. My cool and collected husband busied himself with a Rubik’s Cube while I tried to manage our two young daughters. My nerves were shot, and I quickly lost patience, asking him to help in a tone that left no room for negotiation. Tension was high, and he wasn’t exactly helping matters.

After waiting 45 minutes, we finally heard a knock on the door. Our rheumatologist walked in. She was a simple woman wearing a loose dress and a scarf around her head—not as a sign of illness but rather a practical choice, I assumed. No makeup, no earrings, just a simple wedding ring and straightforward attire. Despite her unassuming appearance, I was relieved to discover that she was deeply committed to solving problems. My daughter became a high priority for her.

After a lengthy conversation, we left with a plan of action. The doctor was particularly interested in the locations of swelling and pain, as well as the accompanying rashes and illnesses. I wouldn’t fully understand the significance of this until Kenzie was two years old. All I knew at that time was that this fact was unusual.

Treatment Plan

After a detailed conversation, our new rheumatologist decided to prescribe a heavy dose of NSAIDs—so much so that everyone who encountered the prescription was shocked. Apparently, it wasn’t a typical dosage for a child her age, but given Kenzie’s symptoms, the doctor felt it was necessary to provide relief quickly. Time seemed of the essence. 

Navigating the pharmaceutical hurdles for this medication became a challenge, but we eventually settled into a daily routine of Naproxen to manage her pain while awaiting a final diagnosis.

Officially Official: JIA Diagnosis

A few months later, after ongoing inflammation throughout her body, Kenzie received the official diagnosis of juvenile idiopathic arthritis (JIA)-an autoimmune disease that caused chronic inflammation and pain in the joints of a child. This diagnosis would change six months later, but it marked the beginning of our journey to understanding and managing her condition.

The next step was deciding how to treat this autoimmune disease. We had a few options but chose a well-established drug with 30 years of proven effectiveness. To our surprise, we learned it was also used as a cancer treatment. However, we were assured that Kenzie’s dosage was too low to cause side effects like hair loss, weight loss, or fatigue. Despite the shock, we didn’t have much choice—leaving the disease untreated could eventually render Kenzie’s joints immovable, a thought we couldn’t bear.

We opted for the liquid form of the drug, though we were warned about its terrible taste. The nurse suggested some tricks to help Kenzie take it more easily, but despite our best efforts, the experience became traumatic. Kenzie developed such intense anxiety over the medicine that she would run, hide, and sometimes even vomit in the process.

“Medicine day” became a dreaded event in our home, a source of stress and heartache every week. Eventually, Kenzie began vomiting every time we tried to give it to her orally, forcing us to switch to weekly shots. This shift brought new challenges—tears and anxiety for the entire household. Despite every trick in the book, the only way I was able to administer the drug was by pinning my daughter down to give her a shot in her thigh. I felt like the worst parent imaginable. But what choice did I have?

By the time Kenzie turned four, she started vomiting at just the thought of getting a shot. We were headed for serious trouble, and this momma was desperate for a miracle.