by Jennifer Lendvai-Lintner
While driving the day after Halloween, I was surfing my favorite radio stations to find a good song. I paused on one of them as familiar, merry notes rang out. This station had already switched to all Christmas programming. My finger hovered over the button. Stay? Switch? It was the first week in November…something about it felt off.
I’ve seen friends on social media and neighbors around town embracing this early jump to Christmas. We’ve all had a tough run these past few years with the pandemic, so I can’t say I blame them. I’m a big believer in wrapping my arms around what brings me joy without apology. If Christmas trees, jolly lights, and holiday music do this for others, I am not here to judge.
I’m in no rush to Christmas, however. Pandemic holidays, while perhaps a bit lonely, did eliminate the unnecessary sort of hubbub that I frequently get caught up in. The pandemic forced us to do things simply. In that simplicity, I found a much needed breath of fresh air. The race to Christmas this year has me wary. It’s as if I see us careening back toward habits that may not have served us best—they didn’t serve me best anyway. Fortunately, when I need a reminder of what to prioritize, I have my daughter Nóra to thank. She gave my husband and me a gift so powerful and perceptive one Christmas, it helps me keep my priorities in line.
Hilde’s first Christmas was a harrowing time for our family. After two frustrating, grueling weeks in intensive care, she was discharged home on December 23—just in time for Santa to come. I’d like to say it was a Christmas miracle, but those days over the Christmas holiday were more like a nightmare. On one hand, we were happy to be home and together as a family. On the other, my husband Géza and I were up around the clock caring for Hilde. Thank goodness we had the support of my mom because we were in way over our heads. Hilde required supplemental oxygen 24 hours a day in addition to CPAP breathing support overnight. Despite the equipment we had to support her at home, her respiratory status was shaky at best. Every time her cannula would slip out of her nostrils, which happened frequently, her oxygen saturation level would plummet setting her pulse oximeter blaring. She couldn’t be off of the oxygen for even a few seconds without dipping alarmingly low. At night, we had to switch her over to the CPAP machine. Even though it was a relatively quick transfer, we had to hook her up to a small travel O2 tank while we did so. We'd wrangle her into the ill-fitting CPAP mask, pray that she’d tolerate the contraption, and rush to switch over her oxygen from the small tank to the heavy, blue oxygen concentrator. It took two of us to complete the process.
Since Hilde was four months old, we still had her in a bassinet in our bedroom. All of this medical equipment was packed along with her bassinet in the narrow alley on my bedside. The oxygen concentrator alone was the size of a large suitcase. My nightstand was crowded with machines, diapers, wipes, and all sorts of other medical supplies and infant necessities. Hilde received overnight feedings (which I was pumping to provide) via her gastrostomy tube, so we were managing that as well. If she did get fussy overnight (really, who wouldn’t with all of this going on?), I could barely stretch the tangle of wires and tubes to the glider in the corner to try and comfort her. Detaching this, hooking up that, praying that I could get her reattached before the alarms started screaming. One angry machine or another screeched in our ears all night long. Géza and I barely got a wink of sleep. On top of all of this, Nóra came down with the flu on Christmas Eve.
By Christmas morning, I was a zombie. I sat and sipped my coffee beside the Christmas tree, eyes burning from lack of sleep. I was beyond exhaustion; I felt weary—body, soul, and spirit. But Nóra had a specially-wrapped present she had made in school that she was bursting for Géza and me to open. I reached into the gift bag and pulled out a surprisingly weighty bundle of red tissue paper. The contents sort of clinked as I unfolded the wrapping. Inside were three rocks painted with words that represented the gifts Nóra wanted to give to us:
Time. Energy. Relaxation.
Time. Energy. Relaxation. Oh, how desperately we needed those gifts. The painted rocks were accompanied by a beautifully written letter in which Nóra explained why she chose these particular gifts for us. I crumpled. I handed the letter to Géza to read. When he filled up, too, Nóra looked stricken.
“It’s the perfect gift, Nóra. It means so much to us,” Géza told her.
We didn’t have an ounce of time or energy. Relaxation was a concept that felt permanently out of reach. My astute nine year old had pinpointed the three gifts of which we were most in need. As we moved through that difficult season, I kept Nóra’s rocks on my nightstand. I was learning that the terrain as a parent to a child with complex medical needs and disabilities is frequently overwhelming and unpredictable. It can swiftly rob me of my time, energy, and relaxation. Nóra’s rocks are a vital reminder—I am the keeper of my time. I am the protector of my energy. I am responsible for my own relaxation.
Today those rocks have a new home; they sit atop the dresser in my closet. It’s a place I see several times a day, so I remember to be my own keeper and protector. It’s a conscious and constant effort to keep non-essentials at bay in order to create the space I need. It’s not easy for this people pleaser to do, but it means I need to say ‘no’ when I feel like I should say ‘yes’. It means I allow in people and activities that build me up and avoid those that drain me. I pay careful attention to the areas within me that need to be fueled, and then I prioritize things that light me up—reading, writing, fresh air, snuggling Hilde, walking, talking to a friend, grabbing lunch with Géza, spending quality time with Nóra and Bence. These are the essentials. My responsibilities are piled a mile high; our life is really complicated in some areas where there isn’t much I can do about it. But it doesn’t have to be complicated everywhere. There are pockets of peace and ease as long as I claim them.
The holidays have the potential to be a particularly draining time. This is the season when invitations quickly pile up and so do the ‘to-dos’—social engagements, family celebrations, school events, holiday cards, parties, dinners to host, gifts to get and wrap for this exchange or that. The most precious gifts I’ve ever been given are time, energy, and relaxation. I need to hold onto them with both hands.
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[Image Description: Author Jennifer holds three rocks painted with the words time, energy and relaxation. They are cupped in her hands. She holds them out in front of her. Her maroon sweater, gray shirt, black leggings and brown clog slippers are in view. She stands on the grass with fallen autumn leaves scattered about.]