This is the second of a three-part series of articles on suffering and questioning God, written by a parent coming to terms with his daughter’s chronic diagnosis. Check out part one here.
Parenting a child with a lifelong illness has rocked my faith. For me, it isn’t a rock-solid belief anymore. Faith is no longer something I feel down to my bones. It isn’t a light that perfectly illuminates my world. Rocks erode; bones break; the sun can’t stop clouds from covering it.
I know, now, that faith is a paradox.
In November 2017, my beautiful, brave, carefree 2-year-old daughter was diagnosed with type 1 diabetes. And as we recently passed the one-year anniversary of that diagnosis, something unexpected has begun to take place: I’m beginning to feel again.
When your toddler gets a lifelong diagnosis, you immediately enter survival mode. Throw two other kids in the mix, a marriage, and relocating for work—and you don’t have time to feel. But we’ve slowly settled into our new normal. It involves math at every meal. Four injections a day. Constant blood glucose level checks. Visits to a specialist every other month. And a low-level dread that things could change on a dime.
Numbness is a survival mechanism. And normalcy ends the need for it. But as I began to feel again, I could have never anticipated the flood of disparate emotions that would come with it. Oftentimes, in the same breath, I find myself both pissed at God and grateful for his care; feeling the defeat of a victim and the empowerment of a victor; weak enough to stay in bed all day and strong enough to fight diabetes to the death. And, as strange as it may sound, I think that’s exactly where a genuine faith grows.
Pissed and Grateful
I feel this the most—almost every day. And dammit if my toddler did anything to deserve the lifetime of injections, blood sugar spikes, and nutritional label-reading that has become her world. Also, please, now is not the time for theological pandering about original sin and the depravity of mankind. You’re right; she isn’t perfect. And she still doesn’t deserve it. So I’m pissed. Because if anyone had the power to stop it, God did. If anyone had the foresight to know this was coming down the line, God did. If anyone has the ability to reach out and heal her, God does. And, yet, he does not.
But for all He’s left undone, God hasn’t been absent. And for that, I feel a level of gratitude that I struggle to put into words. Before the diagnosis, when my daughter’s blood was becoming dangerously acidic, He kept her alive. When we had to wait an entire weekend to see a doctor, believing it was just a stomach bug, He was with her as she wallowed on the couch. When we got to the hospital and her blood sugar was dangerously high, He kept her from paralysis and organ failure. Through nights in pediatric intensive care, four days in the children’s hospital, the fear of going home, and even mistakes in our treatment of her disease—she still lives, she still plays, she still laughs. And I know that I can’t take credit for that.
It reminds me of Hannah, an equally distressed parent, whose story is featured briefly in the Bible. Hannah’s heartbreak stemmed from the fact that she was unable to have children, though she prayed year after year. The Bible records this about her:
She was deeply distressed and prayed to the Lord and wept bitterly.
Bitter, angry, broken—her emotions didn’t drive her away from God, but toward him. Hannah knew something I’ve only recently begun to grasp: As disappointed, as frustrated, as pissed as I am, God is the only answer. The words fall short, but I don’t know any other way to put it. If I look inside myself, I find no answer. If I look at science to tell me “why,” all it can explain is “how.” If I turn to self-discovery, the best medical care possible, or even grief counseling, I find no answer. I’ve cursed into the night. I’ve yelled and screamed and bargained and begged. And it’s only God. Though He injures me, still I run to him. In Him is the only healing, the only truth, the only reality I will ever find.
I’m trying to be like Hannah. To let my anger push me toward God, not away from him. It’s the paradox of being both pissed and grateful. It doesn’t make sense. But, it also totally does.
Victim and Victor
Diabetes ripped a path through my home. At my worst, I count myself one of its victims. That’s a difficulty of grief. It blinds you to the fact that the real pain is actually borne by someone else. My daughter has diabetes. I do not. Why is it, then, that I mourn how it changes my life? How our vacations must change? Our meal times? How the cost of medicines and appointments must take away from other purchases? I convince myself I’m grieving for her, but in reality, it’s much more about me than I’m comfortable with.
The paradox is that what appears as defeat is a canvas primed for God to paint a victory on. He walked this path with his own child, Jesus, who was illegitimately tried and brutally executed. To everyone around, even his closest friends and followers, it was utter defeat. They had nothing left. And yet that hopeless darkness provided just the right hue for God’s master brushstroke of blinding light. Easter Sunday, God rose Jesus from the dead, marking a permanent clearing of our sin.
For us, Easter came this September. And it came in the form of a continuous glucose monitor. These devices, worn by patients, monitor blood glucose without the need for painful finger pricks. It’s amazing technology that would give our daughter a more “normal” childhood and add peace of mind for us as her parents. The only problem: They are supremely expensive.
When we first learned about the device, my wife and I felt victorious—and then, after running insurance, we found out we’d still owe a couple thousand dollars. And just like that, I was a victim again. The cost made it an impossibility, hope snatched from our hands. My wife prayed. I was too pissed.
A few weeks later, we got a phone call. A stranger—someone I don’t ever remember meeting—heard about our need. And she wrote a check. The number had a comma in it. Paired with a financial gift from my parents, it paid for the device. The day it arrived in the mail, Easter sunrise broke over our house. Out of the ashes of despair, God had made a way.
I still go to that victim place far too often. But my wife’s faith, and the memory of that kindness of a stranger, pull me out of it. They teach me that victory only feels that way if you’ve honestly stared down defeat.
Weak and Strong
As a father, I believe my place is high on a white horse. I want my family to look to me for strength, for inspiration, for wisdom. To think that dad’s got his shit together. After my daughter’s diagnosis, everything about me—my spiritual depth, my emotional health, my authenticity in relationships—was exposed. And I found it all much weaker than I ever believed.
You’ve read enough to know there’s a paradox involved here: With God, weakness is translated as strength. An early church leader, Paul, who himself suffered from some kind of physical or emotional turmoil (even asking God three times to remove it—he didn’t get his wish), wrote this:
I pleaded with the Lord three times that it might depart from me. And He said to me, ‘My grace is sufficient for you, for My strength is made perfect in weakness.’ Therefore I will boast in my infirmities…for when I am weak, then I am strong.
When I let God father my daughter—even father me—things go much smoother. My daughter plays. My wife rests easy at night. I find the ability to laugh again. But when I’m eaten up with having to be perceived as strong—all the problems anticipated, all the treatment plans lined out, all the t’s crossed and i’s dotted—my stress skyrockets and I find control slipping through my clenched hands like water. I’m not fooling anybody.
Strength is found in admitting weakness. In owning my limitations. In crying out to God for help. There, and only there, true strength is found. Jesus himself described a mature spiritual life as becoming “like a child.”
For all the sleep I’ve lost about my daughter’s diagnosis, she doesn’t seem fazed. In fact, in many ways, her simple acceptance and trust in me, as her parent, surpasses my acceptance and trust in the God I call Father. Her faith is something to aspire to—it changes things.
A few weeks ago, my family sat around the dinner table. My daughter, in passing, said, “Daddy, I want God to give me a rainbow.” I smiled and hoped she’d quickly forget what she said. It was monsoon raining outside. There was no rainbow on our horizon. Fast forward 30 minutes, and we’re at a gas station when she points out the window. “Daddy, look!” And there it was, a rainbow streaked across the sky. Unanticipated, even un-looked for, by everyone except the child with faith. The child with simple trust, honest emotions, and a space for paradox.