My pastor frequently speaks of “kid pain” and acknowledges there’s nothing like it. I can testify to that. After nine months of uncertainty and unexplained issues following the birth of our now 4-year-old daughter, Harlow, we finally received her diagnosis of Pyruvate Dehydrogenase Complex Deficiency (PDCD), a life-limiting mitochondrial disease with no cure and no FDA-approved treatments. It was heartbreaking.
In moments like these, a parent can fall into complete desperation. You go through a range of emotions almost too fast to name: fear for your child’s life; anxiousness about how much time you’ll get with them; overwhelming grief. And although we were not grieving a death, we were grieving what we thought our life would look like as parents of two beautiful little girls. Our lives changed instantly on diagnosis day.
I would be lying if I said we weren’t angry at God. We questioned His existence in that moment, and those feelings didn’t disappear overnight. The timeline looked different for my husband and me, but faith did not rush back in neatly packaged and polished. It came slowly. Sometimes reluctantly. Yet once the initial shock wore off and we embraced our new title as rare disease parents, we began to see God show up in ways we hadn’t expected. It came in doctors who didn’t give up, in researchers studying treatments, in families who welcomed us into a community none of us asked to join, and in a strength we didn’t know we possessed.
Still, I think we often measure God’s goodness by whether a miracle happens exactly the way we prayed for it. Did the disease disappear? Did the diagnosis change? Was the outcome reversed? And if not, we quietly wonder where He was.
I’ve heard it so many times: “God doesn’t give you more than you can handle.”
Frankly? That’s a load of crap.
This is more than I can handle.
Watching your child struggle for the milestones most parents take for granted is more than I can handle. Living with the uncertainty of how much time you have is more than I can handle. Sitting in meetings fighting for access to treatments that could change her future is more than I can handle.
But here is what I have learned: God never expected me to handle it alone.
Scripture does not promise an easy road. It promises His presence. It promises that He walks with us through the valley and not that He prevents the valley. When I don’t have the strength, my husband does. When we both feel empty, our community carries us. When the system feels impossible, doors open that we never could have opened ourselves.
Over time, something shifted in me. This was no longer just about Harlow. Somewhere between clinical trials, advocacy meetings, and standing in rooms where I felt wildly unqualified, I began to realize God was using our story for something bigger. Not because He caused this disease, but because He wastes nothing. He is using our pain to amplify the voices of other rare disease families. He is using our platform to push for change in systems that overlook small patient populations. He is using our obedience, even when it feels uncomfortable, to serve children we may never meet.
I used to pray only for healing. Now I also pray for courage, for endurance, for wisdom, for the right words in the right rooms. If a miracle comes in the form of a cure, we will praise Him. If it comes in the form of a step taken, a year gained, or a treatment approved, we will praise Him. And if the miracle is simply the strength to keep going tomorrow, that too is evidence of His presence.
Faith as a rare disease parent doesn’t look like perfect peace. It looks like wrestling. It looks like showing up anyway. It looks like trusting that even when we don’t understand the plan, we are not walking it alone.
And maybe the greatest miracle of all isn’t that this is something I can handle.
It’s that I was never meant to.
by Cara Arnold 
by Christena Estby 
