On Christmas morning, many children excitedly race downstairs chasing the smell of fir and are presented with an adorned tree and piles of wrapped gifts.
For kids in a children’s hospital, there is no fir smell, no tree to call their own and no racing. However, it is still a special day within the walls where smiles, laughter and joy are remembered.
Nurses walk around with Santa hats while administering medications. Christmas cookie decorating occurs down the hall in the arts and craft room if a young patient can make it in between uncomfortable procedures. “A Christmas Carol” is scheduled to play that night in the movie room. Similar to the snow outside, it is one day in the year where fears and stressors melt away as families enjoy this special time.
Reality is never far, though, and it is not uncharacteristic during the holiday season to find a hospitalized child with a disease called cystic fibrosis. Cystic fibrosis, or CF, is an inherited disease affecting mainly the lungs and digestive system. It produces a thick mucus that often clogs the lungs and obstructs the pancreas, making it difficult to breathe, causing lung infections and preventing normal digestion. As a result, the children’s hospitals becomes a second home, especially during the winter season, when respiratory diseases are in full effect, and where these young boys and girls can receive antibiotic therapy and other treatments.
On a Christmas-past morning, a stethoscope around my neck and a matching red Santa hat covering my head, I walked into Sarah’s room — a young girl with cystic fibrosis. Boughs of holly were laid above the head of her hospital bed. Her outline under the covers was made visible by Christmas lights her parents had strung up just a few hours earlier — orange, red, green and blue beacons of hope shining bright. But now, all was silent, as her father’s prayer-filled body lay asleep on the bed adjacent to her. In hopes of not waking up Sarah or her father, I slowly closed the door. Right before the door shut, I caught a glimpse of her Christmas list, which only had one item on it.
Sarah’s Christmas list: “1. A new lung for breathing.”
In actuality, Sarah needed two new lungs. Even with a lung transplant, her life expectancy is still much shorter compared to the general population. A few hours later, as I returned to Sarah’s room, a huge smile sprawled across her face as she was shaking in her chair undergoing vest therapy — the treatment needed to break up the mucus in her lungs — as the Christmas classic “Sleigh Ride” filled the room. One can imagine life is hard for these children living with chronic illnesses, but these are some of the most resilient boys and girls you may or may not ever meet.
Dec. 25 is the one day of the year families get to focus on their child’s happiness instead of the financial burden or the fear of their child’s disease. It is a day of gratitude to spend one more Christmas together as a family — a recognition that next year is not guaranteed. The exploration of gratitude and appreciation should not be seasonal, and Sarah reminds us that every week, day, hour and breath we take, matters.
This is why I choose to spend Christmas in a children’s hospital.