Deck the Halls and Hospital Rooms: Finding Joy in a Difficult Season
What this family learned from spending Christmas 2013 in the hospital
As we prepare to celebrate Christmas, I can’t help but remember a particular year in the MacDonald household.
In 2013, my youngest son, Caeleb, couldn’t catch a break from hemophilia. Constant spontaneous bleeding episodes into his right knee and ankle kept my boy in the hospital more often than not.
We spent almost every holiday that year in a room on the sixth floor of the University of New Mexico Hospital, where the special pediatric unit was located. We celebrated each day in our way. I played a love song on Valentine’s Day and asked my wife, Cazandra, to dance. We dressed in green on St. Patrick’s Day and brought a cake with green icing to the hospital. July found us looking out our window to see the fantastic fireworks displays all around Albuquerque.
We made the best of what we had, but something changed as we sped toward Thanksgiving and Christmas. Weariness began to raise its ugly head as we faced the possibility of celebrating the holidays in the hospital. We hoped there might be a respite from the pain and constant bleeding that Caeleb faced.
Unfortunately, relief didn’t come, and we realized we had to prepare to spend the season in the hospital. Cazandra moved heaven and earth to bring a sense of celebration into a challenging situation, and I gave thanks for her strength and creative abilities.
On Thanksgiving Day, my oldest son, Julian, and I found an open restaurant and ordered a Thanksgiving feast. We finished the day laughing together as we played board games.
Joy replaced sorrow as we realized that the time spent together was more important than where we spent it. Although Caeleb was struggling with a horrible bleeding episode, we still gave thanks for one another. Nothing could keep us from sharing hope while managing a difficult situation.
As Christmas approached, we felt the same anxiety take hold that we faced before Thanksgiving, How could we celebrate the holiday when stuck in a hospital? Cazandra came up with a great idea. She went to Hobby Lobby and bought a small Christmas tree, borrowed a screen projector, and hung decorations around the room. Her hard work paid off as she filled the room with festive lights and other holiday treats.
As my wife brought the Christmas spirit to us, we realized once again that the most crucial part of the season didn’t depend on our location. The best component had no shape or form; it was simply the love shared freely by my family. We proved that nothing could keep us from finding joy in any circumstance — even one involving joint bleeds and severe pain.
The year 2013 was a long time ago, and our family situation has changed drastically. Our medical team found a combination of medications to stop Caeleb’s breakthrough bleeding episodes. Hospitalizations became the exception rather than the norm, and Caeleb no longer had to complete most of his schooling in the hospital.
I look back and realize that the spirit of Christmas surrounded us and gave us strength. I celebrate my family’s power and give thanks for them. This holiday season, I remember that nothing can break us down if we hold fast to one another.
Although it was a tough year, 2013 helped us find our strength and realize that the essential part of the holiday season is the love we share with family and friends. Hemophilia may make itself known, but it cannot define us.
When we raise a glass on Christmas Day this year, I will say, “I love everyone at this table and am grateful that I call you my family. I offer you each this benediction: Be blessed. Be loved. Be lifted high. Most importantly, know I love you with all my heart. Merry Christmas.”
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.
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Comments
Diana Caskey
Those of us who are parents of children with hemophilia have interesting holiday memories. My youngest son Colin, who is now 51, spent his first Christmas morning in the hospital from a tongue bleed which led to his diagnosis. He was released later that afternoon which was the best Christmas present ever.
Joe MacDonald
Diana,
Thank you for sharing your story. We do have very unique stories.
Peace,
Joe MacDonald