For many of us, the thing that makes this time of year special is our commitment to our holiday traditions. It’s the customs we find ourselves doing year after year like decorating our homes, volunteering in our local communities, driving around town to look at the lights, and cooking a special meal with our families that creates the feel of magic in the air.
So what happens to these traditions and this feeling of enchantment when you find yourself spending the holiday far from home, and in the midst of a medical crisis? For Jackie, mother to 11/2-year-old Chloe and 9-year-old Destiny, the answer to this question is to be creative, accept help when it’s given and shift your priorities.
Jackie and her wife Beth are well versed at this whole “holidays in the hospital” thing. Seven days after their daughter Chloe was born, she was diagnosed with SCID (Severe Combined Immunodeficiency), which essentially means Chloe was born without an immune system. Chloe has spent every day since at the hospital, in isolation, to help keep her protected while she receives treatment. Over the course of her first year and a half, Chloe has received two bone marrow transplants, two different types of chemotherapy, and has had to have the lines in her chest replaced. She is a warrior in a fragile body. With Chloe’s health in such a delicate, precarious balance, Jackie and Beth had to make some difficult adjustments. First, they had to divide their family up to ensure everyone’s needs were being met. Destiny, their oldest daughter, went to live full time with her dad in Longmont, and has yet to meet her baby sister because of Chloe’s tenuous immune system. Then, with mounting medical bills and the need to be at the hospital daily, Jackie and Beth decided it was best to give up their home and move in to Brent’s Place permanently until Chloe’s health improved. For the past 500 days, their lives have been in a constant upheaval, and they have had the excruciating task of making a life for their little girl as she grows up in a sterile hospital room.
Last year was their first experience of the holidays in the hospital; it was also Chloe’s first Christmas. Their typical holiday traditions like going to the Zoo Lights, decorating their Christmas tree, or visiting their large family were not an option. At first, Jackie felt the heartbreak that comes with that realization. Her daughter’s first Christmas was going to be anything but typical. Jackie and Beth had to split their time between their two girls, and started feeling the stress building thinking about buying gifts for both of them and finding a way to make the occasion special within their limitations.
Looking back at that experience now, though, Jackie realizes that that she learned a few vital lessons through that first holiday go-round. First, while they couldn’t partake in their normal holiday customs, they could make new ones. Bringing the nursing staff holiday breakfast, for example, is a joyous part of their annual tradition now.
Letting go of the reins just a little and allowing others to step in and help, was a humbling and unexpected experience as well. Jackie credits Brent’s Place for making the season magical for all the families who reside there. She says that Brent’s Place makes the holidays happen so the parents don’t have to worry about pulling it off in the midst of everything else on their plates. They can focus on what really matters—their child’s health, spending time together and making memories—and the Brent’s Place staff will do the rest. With the help of Brent’s Place, Jackie and Beth were able to enjoy special holiday meals and provide heartfelt gifts to their children. The holidays happened, and they were special, even if they were a little different than usual. As Jackie puts it, “Brent’s Place will make sure you have everything you need. Things will fall into place. Don’t stress. Smile, feel blessed and thankful that there is this amazing nonprofit available to us. They provide us with so much more than just a place to lay our heads, shower, and eat. They truly provide us with a home.”
And finally, Jackie says the little things take on a new, deeper meaning when you’re celebrating the holidays in the hospital. Watching Chloe’s joy and curiosity as she studied the Christmas lights in her hospital room for the first time was a happy memory for both she and Beth. It wasn’t quite to the scale of Zoo Lights, but it was still a magical experience. And, Jackie adds, being provided a holiday meal so she didn’t have to stress about cooking, was a gift unlike any other.
When I began interviewing Jackie for this post, they were preparing for a second Christmas at the hospital. However, on December 7th, 508 days after Chloe was admitted, she was finally released to her Safe-Clean home at Brent’s Place! Although Chloe still has a long road to recovery ahead of her, this first step is the biggest one. This year, Jackie, Beth and Chloe will wake up Christmas morning together as a family; a seemingly small act that we may have taken for granted had we not known their story. They will partake in their new tradition of delivering breakfast to the nurses at Children’s Hospital, eat a special meal around their own dining table, and maybe even drive around Denver to see the Christmas lights. These “little” things have taken on a much bigger meaning this time around. While they still might not be able to resume every holiday tradition just yet, Christmas will be magical nonetheless.