Including extended family in our Thanksgiving in the hospital
What we once avoided became a source of strength, wisdom, and love
One thing I noticed during my son Caeleb’s frequent hospitalizations was the need for his mother, Cazandra, and I to circle the wagons to protect him and his brother, Julian. We gave friends and family updates and quick calls, but during many holidays that we celebrated in the hospital, we didn’t include other family members in our bubble. Our goal was simple: We wanted to protect each other and keep a safe space to express our anxieties and fears.
Allowing others into our “core four” meant reaching outside of our nuclear family. Doing so made us open to other opinions and suggestions that we neither wanted nor needed. I didn’t need any questions or hurt feelings while we had our issues to sort out. I didn’t need anyone else’s voice in my ear. I’d studied hemophilia, which both my sons have, but those others had not. I learned the language and earned the respect of Caeleb’s medical staff. I didn’t want to be the one who started a family uprising.
Another reason I didn’t want others to try to help me in my struggles was because I knew Caeleb. I knew what worked (and didn’t) to motivate him through the trying times of continuous bleeding episodes in his right ankle and knee. I didn’t want to give up my power over the situation. I didn’t want to invite anyone into my family’s bubble. Hemophilia complications were our issue and no one else’s, I decided.
Another point of view
I was playing these feelings out close to my chest. But while maintaining our tight unit was necessary, it also had a downside: It didn’t allow other people the chance to provide us with strength. We missed other people’s wisdom, particularly the wisdom from our grandparents, mothers and fathers, aunts and uncles, sisters and brothers. While the bubble worked to keep us focused on one another, it also kept out those who loved us and longed to show their support in an exceedingly demanding situation.
One year, when Caeleb, my youngest, was in the hospital over Thanksgiving, I decided to do something radically different. My extended family lived in Houston and usually ate dinner at 1 p.m. I phoned my mother and told her we wanted to celebrate the holiday with everyone and asked if we could set up a Skype session (in those pre-Zoom days) so our family could eat with those in Houston. I could hear the excitement in her voice as she said, “Oh, son, that would make my holiday.”
When the time came, we gathered at the screen and ate our feast in a hospital in Albuquerque, New Mexico, while my mom sat at my aunt and uncle’s table in Houston. Despite the physical distance, the joy and connection we felt were palpable. We laughed and discussed life, the hospital, and other events going on in my family.
We even participated in a tradition dating to my earliest years.
It went like this: Each member at our tables would say one thing for which they were thankful. Some of my crazy aunts and uncles made us laugh while others made us cry. When my turn came around, I grabbed the hands of my wife and sons, looked into the screen, and said, “I am grateful for my family, all of you. I could not manage the difficulties of a bleeding disorder without your incredible love and support. You are amazing, and I am grateful to be a part of this family.”
My mother started to cry, so to break the ice, I said, “Calm down, Ruby Jane. This holiday is a day of gratitude. Oh, and I am blessed to be called your son.” We raised our glasses, said “Cheers,” and began our feast. I closed my eyes briefly and had the feeling that we all shared a place at the same table.
I learned an important lesson. There are times when complications related to hemophilia must take center stage, and we must put people at arm’s length to handle the situation. However, we must also remember to bring our loved ones back into the fold because their support is crucial. They provide us with a safe place to land when all seems hopeless.
The relief and comfort of sharing the burden with loved ones are immeasurable. The refuge they offer us serves as a place where we can gather strength to face another day.
On this Thanksgiving Day, I wish you peace and joy, all infused with hope.
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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