If I were to ever get a tattoo, my Battle Cry would be the one. Since Lola's diagnosis of Cystic Fibrosis, I feel like I've been drafted into a war against an invisible enemy, a shadow in the dark. It's the first thing that scrolls across my mind when my eyes pop open every morning, the last thing I think of before my day bleeds into night and many, many times it lurks in the shadows of my dreams just to let me know it's still there. There are no weekends or holidays off for this disease. It's 365 days a year, 24-7, in your face. It's like the CNN ticker that crawls along the bottom of your screen. It just never, ever stops...an infinite reminder of sorts. Already our first year of living with CF has come and gone. We came through battered but relatively unscathed and for that I am grateful. Yet, it never fails. Just when I think I've got a handle, a good firm grip on it, that shadow reaches out from within and shakes me to my core. It grabs me by the neck, chokes me with fear and screams it's own silent roar, "Not so fast, Kelly. Not. So. Fast."
"Your daughter's newborn screen came back abnormal. We would like to test her for Cystic Fibrosis." That was our introduction into the wonderful world of CF. Two inconclusive sweat tests and a genetic test later, we were told that she had Cystic Fibrosis. Excuse me, but where was this in the fine print of raising children? I don't recall signing up for this. And twice? Definitely not twice.
Three weeks ago, we got that same phone call. The one that begs your heart to stop as you drop to your knees and try to gasp for a breath that isn't there. That's the one. It was the same, even voice, "Charlie's sweat test results are in. The numbers are high." My Boy Wonder, the protector of his baby sister, has Cystic Fibrosis too. Since that call I often fantasize about redoing that moment. It would have been great to have replied, "I'm sorry. You must have the wrong number. We've already had our fair share of trauma at this household and besides, my pot roast is nearly done. Thanks for calling though. Have a nice day!" Isn't that how June Cleaver would have handled it? Too bad my quick wit never seems to surface during times of crisis.
At this point, the wound is still fresh. It's painful to the touch and still seeping tears. Just this afternoon I had to swallow a lump in my throat the size of Mt. Rushmore as a neighbor child pried a little too deep. "Yeah, I know about the vest - that it helps their lungs but why do they have to wear it? What's wrong with them?" Gulp. Didn't see that one coming but knew it wasn't too far off. I'd rehearsed this moment several hundred times on my way to and from work as if an Academy Award depended upon it. Regrettably, I don't know how convincing my deer-in-the-headlights delivery was.
In spite of it all though, I know how lucky I am. Charlie and Lola are doing very, very well with CF; much better than I come to think of it. I remind myself daily that things could be far worse. And so I make a conscious choice not to ignore but to coexist with the infinite CF ticker running its loop across my brain reminding me that yes, it's still there, lurking in the shadows.
What's in My Head
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