“I hate my treatments. I don’t want to have cystic fibrosis anymore.” That statement came during a recent night with my daughter, Claire, who has the disease. I was trying to persuade her to complete her breathing treatment, but I was facing resistance. As parents of a…
Raising Rare — Jennifer Chamberlain
Jennifer Chamberlain is a wife and the mother of two. Her youngest child was diagnosed with cystic fibrosis while in the NICU. Jennifer has always been passionate about writing, majoring in English in college and teaching a creative writing workshop to middle school students upon graduation. She went on to receive her law degree and is currently a practicing attorney. A Southern California native, you can find her at the beach, planning her next trip, or teaching Pilates in her free time.
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“Mommy, what was that?” The wind whistled against our house, reaching 50 mph. We’d already lost power once in a precautionary outage. Meanwhile, communities less than an hour from our home were burning to the ground. While we weren’t in imminent danger, I was worried. As a native of Southern…
“I want to have a baby girl with pink hair and a baby boy when I’m a mommy,” my daughter, Claire, boldly announced as I was cooking dinner the other night. She’s a lot like other 5-year-olds, dreaming of her baby dolls coming to life — except she has…
After a particularly stressful six months, I hit a breaking point a few weeks ago. I was finding myself constantly overwhelmed by life. I still feel that way to an extent. School activities, schedule changes, and behavioral issues with my kids send me into a tailspin. Work deadlines haunt me…
In the next two weeks, my goal is to raise thousands of dollars for the Cystic Fibrosis Foundation. I’ll hike 17 miles and host a Pilates fundraiser to try to reach this amount. These commitments are atop my already jam-packed schedule filled with school drop-offs and pickups, after-school activities,…
Most days when I start my computer, I barely glance at my home page before shutting it down. But the other day, an article title about a “glass child” caught my eye. Something was telling me to read the article. Upon reading, I learned that the term “glass child,”…
As the dust swirled nearby, I adjusted my daughter’s mask. We were in the middle of nowhere, off-roading to a mining ghost town with no cell service. The scenery was gorgeous, yet I began to second guess my decision. Was I putting her at risk for a day of adventure?…
Recently, we went on a trip with my husband’s family to Maui, Hawaii. The trip came after a particularly stressful two months of being displaced from our home. I was looking forward to relaxing and unplugging. But I was most excited about how our daughter with cystic fibrosis (CF),…
For days after having an anatomy scan, I spent most of the time lying on the couch, crying. My eyes were so swollen I had to ice them to keep them open. We were living every parent’s worst nightmare: Our unborn baby had ultrasound abnormalities. The fear of the…
I can still remember my husband’s face when he walked through the doorway on that fateful summer day. We were awaiting his genetic carrier results during my second pregnancy. As a first responder, he never comes home early from a shift, but on that day, he was home five…
I nearly fell asleep in the bath the other night. It was after a particularly hard day with my daughter, Claire, who has cystic fibrosis (CF), and I was exhausted. The night had ended in screaming and tears once again. In the last few weeks, it feels like there’s…
My husband and I sit in the same waiting room we did years ago when our daughter, Claire, was a newborn. A similar sense of anxiety washes over me as I watch for her pulmonologist to emerge from the operating room. Claire was undergoing a bronchoscopy, a procedure to…
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