Jan 6 2011
This is the blog entry I’ve loathed to write. I don’t know how to boil it down. How do you sum up seven month’s of stress and fear and tears, smattered with lapses of relief. It’s just too daunting. Besides, writing makes it more real.
Not that we haven’t dealt with reality.
The reality that when Brynn was 10 days old, we learned that she has cystic fibrosis. A reality that seemed impossible since both parents must carry the CF gene to potentially pass it on, and we knew that while I was a carrier, Martin was not. He tested negative. I remember when his results came back. I was about 4 months pregnant and we were eating lunch, instead of Christmas shopping. Negative for cystic fibrosis, the voice on the phone said. Phew, one less thing to fret about.
But humans make mistakes, lab technicians make mistakes, wrong tests are submitted, and results are tainted.
It’s all a game of odds. About 1 in 25 people of European decent carry the CF gene. Unbeknownst to us, both Martin and I silently carry a copy. Unbeknownst to us, each kid had a one in four chance of getting CF. Which is exactly what happened to Brynn.
Since early June, we’ve acclimated ourselves to the realities of cystic fibrosis — a manageable but incurable illness that thickens the mucus in the body, chiefly affecting the lungs and digestion. We’ve dealt with the reality that Brynn must swallow enzymes with every meal for the rest of her life, to make up for what a normal functioning pancreas should do. And we have to help clear the mucus from her lungs, by tapping on her chest and back and sides each day, twice a day, even when she’s healthy.
Over the summer and fall, we adapted to these changes. Brynn made it easy by gaining an astonishing amount of weight for a baby with CF (high body mass is equated with a strong immune system). With Brynn’s good health and stocky build, it’s been easy to ignore potential complications that lurk far away. Chronic illness, lung disease, a potentially shortened life span.
We’ve skated along, crowing about improvements in CF treatment. And basking in Brynn’s health…allowing ourselves to think that she’s one of “the ones” — a mildly affected patient, who lives a relatively healthy, normal life, aside from niggling asthma-like symptoms.
But even as I’ve soaked in this hope, I knew winter loomed ahead. And in December we hit a speed bump. Brynn got sick the week of Christmas, with a run-of-the-mill virus. She responded well to standard medication. But then she got worse. Her breathing became labored, her cough intensified. Her appetite dipped when eating competed with breathing.
In the last couple weeks we’ve shuttled to doctors, specialists, to the hospital. We’ve strapped a mask on her face every four hours to administer aerosolized meds. Counted her breaths per minute. Willed her to stopped coughing. To stop coughing so hard, she throws up her medicine.
Ever the pessimist, I worry that these are the opening credits of Brynn’s life and of our own. Trips to the emergency room, labored breathing, lung damage, diminishing return on medical treatments. With stress, sleep deprivation and a healthy dose of depression, I’ve been wallowing in my own emotional basket case state. I’ve cried a lot, and drank a lot of wine. Neither seem to help.
Martin is equally stressed — probably more so with my frequent breakdowns — but he does a better job shelving his worries and focusing on the rest of reality. Work, farm, meals, laundry, the other two kids. Despite this wheelbarrow of stress, other aspects of life shuffle along.
Right now, we’re crossing our fingers that Brynn turns the corner today. Otherwise, she’ll be admitted to the hospital tomorrow.
There’s that saying that God (or life, for that matter) gives you only what you can handle.
I’m not sure I believe that.