Even though it was scary, I made attending medical appointments during the pandemic a priority.
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Since the loss of my sister to cystic fibrosis, grief has hit me in waves. Sometimes it feels as though I can't breathe. Despite this, I have been able to function and keep going. That is what Claire would have wanted me to do.
It's been a whirlwind year since my son was born and diagnosed with cystic fibrosis. Despite the surgeries, hospital stays, and challenges of living with the disease every day, I'm thankful for the people who helped pave the way.
Having experienced loss before, I thought I knew how to process grief. But, when I lost my cousin to suicide and my grandmother to the pandemic this past year, I reacted in unexpected ways and learned new lessons about coping with grief.
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.
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.