Why caregiver respite is crucial for rare disease parents
Taking time for myself allows me to better care for my children
Among the everyday chaos, I often pause to reflect on what it means to be a caregiver for my son, Juju, who bravely battles CLN2 disease, also known as late-infantile Batten disease. At just 8 years old, he’s not only my child but also a true warrior facing a tough journey that has reshaped our family in ways we never anticipated. My husband and I juggle the complexities of caring for Juju while celebrating our little princess, Serenity, who will soon turn 1.
Serenity, a heart warrior in her own right due to having a a rare congenital heart defect, adds a layer of joy and responsibility to our lives; both kids are fighting unique battles with rare diseases. Living with Juju brings a mix of joy and heartache. His resilience shines through daily, but the weight of his condition can be heavy. Balancing his needs with those of Serenity and our 15-year-old daughter, Faith, leaves little room for a breather. Faith has her own challenges, which complicates things further.
As parents, we want to support our children completely, but the emotional and physical toll can feel overwhelming. Caregiving is a full-time gig that rarely allows for a moment’s rest. Juju’s needs are constant, demanding round-the-clock attention. From managing medications to providing emotional support, I often feel stretched to my limits.
Trying to meet the needs of both kids while being there for Faith can feel like an unending cycle. Yet, I cherish the small victories. Finding five minutes to sip a warm cup of coffee is a hidden treasure. Those brief moments of silence become sacred, a quick escape from the day’s demands. The coffee’s aroma grounds me, reminding me that self-care isn’t just nice to have; it’s essential.
Respite is often overlooked. Society paints a picture of selflessness, but the reality is that caregivers need to prioritize their well-being, too. Without moments to recharge, we risk burnout, which can hinder our ability to provide the love and care our children deserve. Respite is more than just physical rest; it’s about emotional rejuvenation. It’s allowing ourselves to feel overwhelmed, to shed a few tears, and to reach out for support. Asking for help isn’t a weakness, but a sign of strength.
Whether it’s calling a friend, leaning on family, or tapping into local resources for caregivers, every bit of support counts. As Serenity’s birthday approaches, I’m reminded of the strength woven through our family. Juju and Serenity inspire me daily with their resilience and love, teaching me to savor every moment. Yet, amid this journey, I recognize the need for balance. Faith’s struggles remind me that every family faces challenges, and we need to be mindful of each member’s needs.
Finding time for respite can be as simple as watching a sunset, listening to music, or sharing a laugh with my husband. Those moments recharge my spirit, reminding me that I’m not alone. The love we share as a family is profound, and while the road ahead may be uncertain, we stand united in our strength.
The caregiving journey is both beautiful and challenging. Juju, Serenity, and Faith are my greatest joys, but I must also honor my own needs. Embracing respite isn’t just vital for me; it’s crucial for the strength of our family. Through each moment of silence, each sip of coffee, I’m declaring my love for my children and myself. In those quiet minutes, I discover the strength to continue this journey. And as I look ahead, I can’t help but wonder what more lies in store for us.
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.
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