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The 'Before' and 'After' of My Daughter's Cystic Fibrosis Diagnosis

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Sometimes the moments that divide our lives into “before” and “after,” forever altering us, slip quietly past, only to be realized as important during later periods of quiet reflection.

Sometimes they smack us upside the head.

I’d been the recipient of enough of both kinds of revelations that I’d begun to recognize the moment, even if I wasn’t able to duck the blow. I remember thinking that particular morning, “This day will be the one that changes everything.” Overly dramatic, I know, but I could feel everything changing.

Our daughter, Kaitie, was a happy baby despite an insatiable appetite and digestive problems. At her 18-month well check, her doctor reported that she was no longer growing and was beginning to lose weight. “Failure to thrive,” she called it. Still, I felt that I would just know if something was really wrong; she was our third child, after all, so surely I would see if it were something serious. The doctor didn’t have any idea of what might be causing the problems, so she deferred to me and simply asked that I bring her in again in two months to see if she had grown.

Picking up my sons following Kaitie’s appointment, our neighbor asked if I had mentioned the fact that she tastes salty when I kiss her. So salty, in fact, that she often has salt crystallize on her hair and skin. I’d forgotten to mention it but, at this neighbor’s insistence, I called the doctor and left her a message. This was the clue the doctor had been missing. She called back later that afternoon and asked us to go to Seattle’s Children’s Hospital to have her tested for cystic fibrosis.

Being a writer, my first instinct was to research every aspect of this disease that I’d heard of in only the most general — if dire — terms. After the very first description of CF’s early symptoms, I knew this was the answer. I knew what the test would show.

My husband was nervous the morning of the test, but I felt strangely relaxed, despite my feeling that this was a turning point in our lives. The test itself was painless, merely collecting sweat from her arm and testing it for high levels of salt. The hardest part was keeping an 18-month-old child from knocking it off her arm while she played. Once they’d collected the sample, a moment of panic set in as we were told it could take up to five days to hear the results. After all my supposed calm, I discovered couldn’t wait one more day to know for sure. I called our doctor, and she promised the results that afternoon.

I was alone when the call came, my husband having gone to the store, being too antsy to wait. She told me that test results under 40 were normal, 40-60 were inconclusive and over 60 were positive. Kaitie’s result was 140.

The doctor continued to talk into the phone, but I don’t recall much of the conversation. I met my husband at the door to tell him the results. I don’t know how I expected him to feel, but I was surprised when he began to sob. My first feeling had been relief: relief that we had an answer, relief that we could now do something to help Kaitie feel better. It was some time before the shock wore off and I felt the grief set in.

The following weeks and months were lived in something of a fog. We learned all we were able to absorb about the various possible futures our daughter could enjoy or endure. We discovered that getting a toddler to take medication every time she eats can be a struggle that shreds even the most patient and understanding parent. We also discovered the amazing resiliency and endurance of every member of a family living with a chronic illness.

The fights over medication gave way under the improvements they offered (although those struggles were often renewed during the years of wanting to be a “regular” girl). The uncertainty of new therapies became moments of humor at strange sounds of machines and tickles during chest percussions to clear her airways. Daily efforts to maintain weight, lung function and some sense of normalcy became part of the routine.

Our daughter is now an adult, expecting a child of her own, with no recollection of the days before her diagnosis almost two decades ago. She sees her life as normal for her, having never known anything different. Her brothers have grown to be sensitive and supportive boys, watching her struggles but never failing to focus on her rather than her disease. Her father and I have become advocates for research into her disease and supportive of the efforts and advancements of the hospital where she was diagnosed and still visits on an all-too-regular basis.

I know people often look at our lives in pity, thinking, “How would I ever survive that?” They feel sad to think it could be their child who lives with pain, with the knowledge that life may be hard and too short for someone they love. And it can be hard. It can also be beautiful. It changes how you see the world: in “now” moments instead of “someday” futures, reveling in laughter and family, relinquishing the idea that we have control over what the future may bring. We may fondly remember the innocence of the time “before,” but we have found love and laughter while living the “after.”

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Thinkstock photo by RapidEye

Originally published: January 13, 2017
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