Raising Rare - a Column by Jennifer Chamberlain

“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 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…

“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…