As the mother of a toddler with cystic fibrosis, I found it hard to deal with the daily grind of treatments, appointments, and insurance claims on top of all other daily responsibilities. After months of suicidal thoughts, I finally reached out for help.
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Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
I am anxiously awaiting the U.S. Food and Drug Administration's approval of Trikafta for children with cystic fibrosis ages 6 to 11. To prepare, I'm doing everything I can to ensure my 11-year-old son can take advantage of the medication as soon as it is approved.
Despite letting negative thoughts get to me when I was younger, I learned to make the most of any situation. This positive mindset has helped me succeed in college, and I want to help pass along what I have learned.
When I feel anxious, I go for a run or do a crafting activity to relieve the stress. I used to think I didn't have time for this, but now I know that I need to make time to take care of my mental health.
When my husband got COVID-19, we had to set up strict rules and procedures to keep our adult daughter, who has cystic fibrosis, safe.
With COVID-19, a year indoors -- and online -- has brought up a familiar feeling that screen time has the potential to bring us hope and laughter. On the other hand, the internet can also convince us that the sky is falling.
The hope that came with the authorization of two COVID-19 vaccines has been coupled with anxiety and frustration as I wait.
Although many believe COVID-19 vaccines will allow for a return to normal for some, unanswered questions leave me wondering what “normal” will be.
Although they have been full of physical and emotional challenges, as well as life interruptions, multiple transplants have helped me become the person I am.