While my husband and I are learning more about raising a daughter with cystic fibrosis, we don't let the occasional humorous moments pass us by. Being able to laugh about certain things lets us know that we have come a long way.
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The only thing that is certain in my life is the uncertainty of my teenage daughter's next hospital stay. Despite this, she has somehow managed to supervise her own academic life from a hospital room.
Looking back at my freshman year, I realize that putting college before my CF wasn't the first thing I had all wrong.
My daughter was born with cystic fibrosis and with an aversion to food. Teaching her to enjoy meals has been crucial to helping her grow and stay healthy.
My son’s CF diagnosis created an unexpected challenge while breastfeeding him. But through practice, help from our care team, and support from the CF community, we found the perfect balance to meet his nutritional needs.
I was determined to finish school and set a good example for my children. Along the way, I learned how important it is to have a strong support system to help manage the challenges that can come with cystic fibrosis while I pursue my dreams.
Preparing for the school year with cystic fibrosis involves careful planning and advocacy. Since my daughter, Desi, started school, I’ve learned about how to best prepare Desi, her teachers, and school administration to help ensure her education and health thrive.
When I realized how much my nutrition strategy was impacting my performance as a marathon runner, I decided to reevaluate my plan to be more intentional about how to best fuel my body before running.
Navigating school can be challenging when you have cystic fibrosis. The following tips can help parents and students feel prepared for a productive school year.
My daughter, Desi, recently started school. Here's what we did to prepare her to manage her cystic fibrosis and navigate the COVID-19 pandemic — and what we learned in the process.