Finding the time: Caregivers must have respite amid the chaos

In the whirlwind of daily life, carving out time for ourselves can feel almost as challenging as seeking a mythical unicorn; it’s like an elusive figment of our imagination. For my husband and me, navigating the fun house mirrors of parenting three children with significant health challenges adds an extra layer of complexity to our journey.

Allow me to introduce the key players in our story: Juju, our spirited 7-year-old who approaches life like a pint-sized superhero, bravely confronting the formidable foe of CLN2 disease (also known as late-infantile Batten disease); Serenity, our 6-month-old who adeptly navigates the complexities of pulmonary atresia with intact ventricular septum, a congenital heart defect; and Faith, our 15-year-old who is grappling with the ups and downs of teenage mental health while trying to decipher whether there’s a manual for adulthood.

Each day for us resembles an intricate medical obstacle course, filled with doctor appointments, therapy sessions, and the ongoing challenge of care management. Juju requires constant encouragement about his medications, specially prepared meals, and activities that could rival any imaginative preschool art project. Serenity demands round-the-clock care, earning her the title of reigning queen of infant attention.

Meanwhile, Faith is navigating the delightful complexities of anxiety and adolescent angst — a truly charming combination, I assure you. Amid this chaos, finding a moment to breathe (let alone enjoy a Netflix binge) often feels as improbable as locating a clean sock in a teenager’s messy room. Friends and family may not grasp the extent of our juggling act, which transforms our daily lives into a tightrope walk.

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How we get through it all

Yet amid our responsibilities, we’ve discovered a survival strategy: a flexible routine. Although it sounds sophisticated, it simply means that each night, after the kids are finally asleep (and we’ve celebrated our small victories), we carve out a peaceful oasis in our living room, disconnecting from all electronics and the external chaos.

This cherished hour or two becomes our “we time,” where we discuss everything from our high school crushes to the latest parenting theories, often punctuated by laughter or frantic attempts to recall movie plots as we age and forgetfulness creeps in.

We’ve realized that tapping into our creative sides helps us maintain our sanity. My husband’s painting serves as an emotional outlet, allowing him to express his feelings on canvas. At the same time, I find solace in writing by essentially spilling my thoughts like an exuberant toddler with a crayon.

Together, we approach caregiving as a well-coordinated duet, seizing brief moments throughout the day to discuss therapy strategies while expertly attending to Serenity or searching for the last remnants of our patience.

Let’s not forget the invaluable support of online communities! These virtual connections have become our superhero sidekicks, providing wisdom and a sense of understanding that we warmly embrace during overwhelming times.

Remember, taking time for ourselves is not merely a luxury; it’s vital for recharging. A simple walk around the block, a humorous TikTok video, or coffee on the porch can serve as our fuel to face the next round of challenges. After all, a touch of laughter and love can transform this chaotic carnival called parenting into a more manageable experience!

Note: Batten Disease News 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 other 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 Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.