It’s Going To Be Okay, Even If It Isn’t

When you are the parent of a child with a chronic illness, there comes a point when you just can’t worry anymore. It’s the equivalent of crying so hard you physically have no tears left. You would if you could, but you can’t. So you don’t.

It is such a daily, sometimes hourly concept, that after a while, you have to let go and say, “It’s going to be okay. Even if it isn’t.”

A friend of mine recently confessed she was terrified of taking her two boys to the park. She had this almost paralyzing fear they would be abducted. When she said this, I had an out of body experience, floating above, watching like an alien, a normal conversation with another parent.

I had never once worried about my child being abducted. And yet, the very first week of living in our apartment in Los Angeles, two teenage boys were shot and killed in our little park at the end of our street. Monthly, helicopters circled, their spotlight shining into our windows. We had lockdowns and street closures, and although a necessary concern, crime was not the enemy. Cystic Fibrosis was. It was our shield from all other dangers. It was our only war.

With my friend’s fear, came a realization.

There were other dangers out there. That may sound obvious, and on some level I’d known it all along, but those “other” concerns only existed in a vague precautionary tale. I’d protected my toddler from falling off of play structures, cut food into tiny pieces, baby proofed the house. But that seemed more like reflex, not fear. I never dwelled long on those what if’s.

Cystic Fibrosis is an all-consuming battle, and there is a certain safety to that – – a buffer zone. It is a bubble of life and death that protects us from all other concerns. Like living in a warzone, you still have to go to the grocery store, visit friends, run errands. You simply cannot live in terror all day, never knowing when the next attack will come, the next lung exacerbation or hospitalization. You have to live. And all of those little what if’s that fill our thoughts in peacetime dissipate when there is a colossal threat. I didn’t fret like other parents over potty training or milestones, the perfect preschool or parenting style. My brain filtered out the minutia, so I could concentrate on enemy number one. I could not physically sweat the small stuff because I just wanted my kid to live.

But after this conversation, suddenly I became hyper aware of all the fears I’d ignored – – bird flu, car accidents, choking on a hot dog, pedophiles, leukemia. I’d been fooling myself. With a diagnosis, we weren’t promised a get-out-of-jail free card from all other dangers. I’d erroneously assumed my daughter’s disease protected her from everything else.

Fortunately this overwhelming paranoia lasted about 20 seconds.

When my daughter Adelaide was diagnosed with Cystic Fibrosis at four months of age, I remember thinking, “We will do whatever it takes.” And part of doing whatever it takes is letting go of fear – – to be that shut off valve for my brain and say, “Nope, not gonna worry that my kiddo just licked a worm, or climbed too high on the monkey bars. Not gonna worry about North Korea or pesticides or plane crashes today. ”

We are vigilant with her healthcare, but even more vigilant about life. We hike and bike, surf and snorkel, ride horses and swim, play soccer and travel. Even with daily respiratory treatments, tons of medications, appointments and hospitalizations, we do not let fear rule us, even the big one – – even the beast that is Cystic Fibrosis. It doesn’t own us or consume us. Because as big as it is, our love is bigger.