Finding balance and identity as a cystic fibrosis mom
Even though I already had one child when my daughter, Claire, was born, her birth was a pivotal moment in my life. I wasn’t just a mom anymore; I was a cystic fibrosis (CF) mom. With that title…
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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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 like other 5-year-olds, dreaming of…
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Having doubted before, this year, I’m trusting my intuition as a mother
It started when I was pregnant. Halfway through my pregnancy, we were faced with the possibility that our daughter Claire would be born with cystic fibrosis. This news brought a physical and emotional sensation like I’ve never…
How we have a social life while protecting our child with CF
When I hear a cough in public, my body tenses up and I immediately start scanning the room to see where it originated. (As a cystic fibrosis (CF) mom, I can usually find the source within seconds.) Then…
Fighting for global access to equitable CF healthcare, treatment
Most parents of children with rare diseases spend their lives trying to ensure that their child outlives them. That usually means taking part in fundraising to support the development of new treatments. But even if a child lives…
How a child with cystic fibrosis helps me confront health anxiety
Every time my phone rings and shows the hospital prefix number, my heart skips a beat, there’s a lump in my throat, and I feel paralyzed with fear. Do I answer it or let it go to voicemail? My…
What a ‘nondiet’ diet looks like for cystic fibrosis patients
As I drive through the fast-food line for the third day in a row, I can’t help but feel like a bad mom. Am I really feeding my kid fast food day after day? Would you believe I’m actually…
Past trauma resurfaces as my daughter faces another CF setback
“Direct admission is a possibility.” These words from our daughter’s pulmonologist have been hanging over my head and lingering in my heart for weeks. Today, our daughter, Claire, is scheduled to undergo a bronchoscopy, a fairly routine procedure for…
Finding a balance between working and caregiving as a CF parent
I hate to admit this, but retail therapy is a coping mechanism I use when I’m stressed. It can be as simple as treating myself to a new facial product, but the expenses can add up quickly. Before I…
Maybe we can’t count on medical miracles after all
Note: This column describes the author’s own experiences with Trikafta (ivacaftor, tezacaftor, and elexacaftor). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Recently, we experienced a miracle. Or…
A back-to-school message from a cystic fibrosis parent
Dear fellow parents, After a long summer, it’s finally time to send our kids back to school. Trust me, I’m just as excited as you to have some quiet in my house. But I’m also incredibly nervous. While…
Applying to Make-A-Wish has me thinking about CF life expectancy
The thought of having a critically ill child never crossed my mind until it actually happened. I’d hear or see stories about sick children fighting for their lives on television commercials and social media, but I never imagined I’d…
I worry about how others perceive my daughter’s disease
“Is your child OK?” These perfectly well-meaning words from a stranger cut deep for me. Claire had just finished having a coughing fit in public on a recent road trip when a woman approached us. She introduced herself as…
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