How I encourage autonomy and self-empathy in my CF child
“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…
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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California wildfires reminded me that being prepared is crucial
“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…
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Gratitude and grief can coexist in cystic fibrosis parenting
“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…
Caregiver burnout is taking a serious toll on my mental health
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…
I hate raising funds, but I do it anyway for cystic fibrosis
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.
Glass children syndrome: Are cystic fibrosis siblings at risk?
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…
Adventures in camping outdoors with a child who has cystic fibrosis
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…
Enjoying the benefits of salt water for cystic fibrosis patients
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…
How I learned to become a patient care advocate for my daughter
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…
Finding out I was a cystic fibrosis carrier rocked my world
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,…
Handling treatment compliance issues as a cystic fibrosis parent
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…
I’m processing a recent asthma diagnosis for my daughter with CF
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…
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