Finding joy amid grief during holidays with chronic illness
Reflecting on the kind medical staff who helped us through a difficult season
This time of year brings many changes to the usual routines of life. The weather is colder, the leaves have fallen off the trees, and the days are shorter, with darkness arriving early. It’s also a time of joyous celebrations, traditions, and memory-making. For many, this season includes cookies, gifts, holiday cards in mailboxes, and gatherings of family and friends.
Yet not everyone delights in the holidays. Even amid the joy of the season, fatigue and sadness may also appear. Financial worries, gift-giving pressure, and even family gatherings can lead to stress, and feelings of loneliness and anxiety can trigger the holiday blues.
But these issues can feel especially heavy for those struggling with a chronic illness such as hemophilia.
The gift of presence
My youngest son, Caeleb, lives with severe hemophilia A with an inhibitor. He should be enjoying his senior year of high school, but the past few months have proven difficult. Chronic pain keeps him sidelined from the activities he wants to participate in and prevents him from attending school regularly. His struggles bring me great pain and sadness.
I’m working hard to enjoy the holiday season, but at times I’m overwhelmed with grief for my son. When I feel sad about everything Caeleb is missing, I stop and think about a special place.
The sixth floor of the University of New Mexico Children’s Hospital is filled with pediatric patients and their families. Even on Christmas Eve, Christmas Day, and New Year’s, the rooms will be full.
We spent Christmas there when Caeleb was 8 years old and very sick. He’d developed an infection in his port and had a knee bleed that seemed to never stop. I vividly remember tucking him into his hospital bed on Christmas Eve and then going to church with the rest of my family as my sweet son slept with a fever.
I’ve never felt grief the way I did that night.
But amid all the stress and sadness, I still recall how the fantastic doctors, nurses, and medical staff went above and beyond to make the day memorable for the children and their families. The compassion and joy of those working on the sixth floor were infectious.
The child life team brought presents to the children, paying special attention to the ones who were alone for hours on end because their parents were at work. Service dogs made special visits, along with Santa, and staff members hosted a Christmas feast full of special snacks and favorite foods. These thoughtful actions provided struggling families with moments of respite.
While I still grieve for Caeleb’s losses, reflecting on the kindness of medical staff during our family’s most difficult season reminds me that joy can always be found.
I know the holidays can be overwhelming for many, but I encourage you to think about how you can share joy with those who are ill and struggling.
People with bleeding disorders and their families are often sequestered at home or in the hospital, where loneliness, sadness, and anger can easily arise — especially during this season. Perhaps it’s time to reach out to any chronically ill friends or family members and offer your presence. Let your loved ones know that you see them. Listen to their struggles and stories. That’s the greatest gift you can give to someone who’s hurting.
Your presence could make all the difference in someone’s holiday.
Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.