Notes from the Wilderness

Cartography doesn’t exactly have the sexiest ring to it when it comes to vocations, but if you think about how crazy mapping out uncharted territory must be, the job smacks of adventure. A lake bends just here; and mountains sweep along to this side, extending to the forest. Because of cartographers and their pioneering work, explorers who come after them have an easier go of navigating the terrain.

Becoming a CF mama* has made me wish someone could hand me a map marked out with the landscape I’ll be expected to traverse. Knowing precisely where the quicksand of despair, the cliffs of exhaustion, and the high hills of holy hope are located would definitely make things easier, but this life doesn’t come with a map.

It would be really lovely to tell you that I have taken up my own side hustle of cartography, that I can point out every significant landmark of CF motherhood so that others might have an easier go of it. But I’d be lying. Because cystic fibrosis varies so widely from case to case, the topography is different for everyone. What I can offer is a list of five things I’ve learned during my first two months in this new wilderness. Think of it less as a map and more as a travel journal filled with sketches, notes, and survival tips from my own expedition.

1. To thrive (or, heck, even survive), I have to fall out of love with my ability. About a week after bringing our baby home from the hospital, I was a sleep-deprived hot sobbing mess calmly pondering the deep realities of pain in this broken world and my severe inadequacy to deal with them in my own strength. Anger rose red in my throat at the thought of wrestling our sweet girl into a face mask twice a day for the rest of her life just to keep her breathing. And then I crumpled. If I’m going to maintain even a shred of sanity in the middle of all this devastation, I have to recognize that my very, very best effort won’t be enough. I can’t love my daughter healthy. I can’t plan her well. I can’t organize or work or try away her diagnosis. There’s no amount of anything I can do that will control the situation—and that scares the stuffing out of me. Then the gospel crashes in and reminds me that I never had control to begin with; I was never meant to. There is One who does have total control, and He is good, and He is kind, and He is able to uphold us in all our weakness. Leaning on the little I have to offer rather than on the limitless resources of His love will wreck me. The quicker I throw my hands into the air and go running back to my Daddy, the better I position my family—and my own heart—for God’s best.
2. A wise woman told me that when it comes to CF, it’s just as important to guard against fear as it is to guard against bacteria. Don’t let the fear win, she said. I’ve realized that every time I go down a dark path, it’s because the what-ifs are leading me. What if she catches a cold and ends up in the hospital for weeks? What if this treatment doesn’t work? What if it causes permanent hearing loss? What if it does work, but then she gets to college and doesn’t take care of herself and dies at twenty? What if, what if, what if? Fear never leads anywhere worth going. All I can do is give my girl back to the Lord and remember I’m simply called to steward her well today.
3. If I lose my joy, I lose my witness. For some reason, suffering provides a unique sort of platform. Sure, that platform could serve to amplify my wailing… but an already wailing world needs more than my wailing. It needs proof of a God who hasn’t been shaken despite everything going on. Staying joyful isn’t something I can drum up on my own; it’s part of the Spirit’s work in me. Now I’m not saying I need to paste on a plastic smile and pretend. I can grieve deeply and be filled with joy—there’s hope in this sorrow, faith that one day all sad things will come untrue.
4. Sabbath is no longer simply a nice suggestion. It. is. life. Just like coal miners used to rely on canaries to warn them about carbon monoxide, I need to recognize my own internal canaries that signal an emotional, physical, or spiritual threat. With chaos and bottles and diapers and enzymes and hours of therapy a day, a girl needs some really good quality soul care time. It might include napping, crafting, reading, or listening to a favorite preacher, but a mental mini-vacation can reset this weary mama like nothing else.
5. Sometimes I’m called to fight; other times I’m called to sit. The same God who said, “They shall be like mighty men in battle, trampling the foe in the mud of the streets; they shall fight because the Lord is with them, and they shall put to shame the riders on horses” in Zechariah 10:5 told Israel, “The Lord will fight for you, and you have only to be silent” in Exodus 14:14. When standing face to face with a massive problem like CF, my personal response is to get to work trying to eradicate any vestige of the fall (usually when I have forgotten #1 above). But it’s okay for me to not feel the weight of having to fix this. I can just be present to God in the midst of it. He is still after my heart, even now.

As nice as it would be to study the work of a skilled cartographer in charting my course through CF parenting, no such tool exists. I have a big new frontier ahead. Maybe that, too, is a mercy, causing me to depend on the Maker of the mountains more than on a mapper of them.

*Cystic fibrosis is a rare genetic disease that progressively limits the ability to breathe. Out of the 3.8 million babies who will be born in the U.S. this year, my Pippa is one of the 1,000 to be born with CF. While new treatment options have extended the average life expectancy, this illness will eventually kill her unless a cure is found in her lifetime. To learn more or to help fund crucial research, visit cff.org.