When the Holidays Aren’t Merry and Bright
The holiday season can be challenging and stressful for CF families
Every night when I came home from caring for our daughter in the neonatal intensive care unit (NICU), I would gather our mail to sort through it. It was a task I used to distract myself and make life seem a little more normal.
As the holiday season approached, I started getting holiday card after holiday card. Smiling families pictured together highlighted the fact that my family was separated. We had one child at home for the holidays and another fighting for her life in the hospital. I started getting angry every time I saw a holiday card, so I stopped opening them.
That anger was only fueled by the pressure that inherently accompanies the holiday season. Because we had an older child at home, I felt obligated to engage in the typical holiday celebrations. But the last thing I wanted to do was get into a festive spirit.
The NICU staff went to great lengths to make the hospital a merrier place. But for me, it felt unnatural and forced. I didn’t want to decorate our NICU room or have Santa visit our daughter’s bedside, because I didn’t want to be there. I felt little to no joy during the holidays that year. In fact, they only worsened my anxiety as I was torn between home festivities and hospital life.
Keeping our child safe
Today, this time of year brings a different set of worries as we try to stay out of the hospital over the holiday season. Analyzing risks and taking additional precautions are a large part of what we cystic fibrosis (CF) families do. Now that my daughter is older and more aware makes me work even harder to avoid the hospital. Respiratory viruses peak in the winter, leaving us to make difficult decisions about how and with whom we spend our holidays.
Because of that, the isolation CF brings seems heaviest this time of year, when an emphasis is placed on being together and celebrating. Constant critical thinking reminds me how deliberate everything we do is and how this differs so much from others. We frequently miss out on events to try to stay healthy. Our daughter is often sick and on increased breathing treatments that prohibit holiday outings. We sometimes have to choose the safe path over all others. Things are further complicated when those closest to us do not understand the complexity of our decision making.
But after spending our daughter’s first Thanksgiving, Christmas, and New Year’s in the NICU, any holiday spent as a family outside hospital walls is enough of a celebration for me. No family should have to spend their holidays in the hospital. However, I am now aware that it is a reality for many.
For those navigating a hospital holiday season, remember that there is no right way to spend the holidays. If you aren’t feeling festive, skip it this year or reschedule it for another time. If you want to decorate your hospital room, go for it. The key is honoring how you feel and not letting anyone’s holiday expectations impact how you feel. Because ultimately, what the holidays should do is bring things into perspective to show us what is truly important.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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