Finding time to pursue my dreams as a mother and caregiver
How I maintain my sense of self while caring for a son with Batten disease
Caring for my 7-year-old son, Juju, who has late-infantile Batten disease (CLN2 disease), is a journey filled with challenges and emotional ups and downs. As a mother, the responsibilities can sometimes feel overwhelming, but I constantly remind myself that I am more than just a caregiver. In this column, I want to share how I care for my son and pursue my dreams.
For me, being a mother isn’t just about taking care of my son’s needs. It’s about rising above adversity to achieve my goals. Yes, caring for Juju is a significant part of my life, but I need to remember that I have my own passions that I want to pursue. By giving myself time and space to nurture my interests and work on personal growth, I can maintain my sense of self.
Caring for a child with Batten disease can be physically and emotionally draining, which is why I have found solace in connecting with other parents and caregivers in the rare disease community. I’ve sought support from various sources, including support groups, online forums, and local organizations that cater to the needs of families like mine.
It’s incredibly comforting to share my experiences, advice, and emotions with others who truly understand the challenges I face. This sense of camaraderie and understanding has been a lifeline for me.
Time management is key
Finding a balance between caring for my son and pursuing my dreams can feel like an uphill battle at times, but I’ve discovered that it’s possible with proper time management and prioritization. One of the key strategies I’ve implemented is identifying my goals and breaking them down into manageable tasks.
This allows me to allocate specific time slots for my son’s care and my aspirations. Creating boundaries and establishing a structured routine have also been instrumental in ensuring that both aspects of my life receive the attention they deserve. I have come to accept that living with Batten disease means that unpredictability is often the norm. Therefore, I have learned to embrace flexibility and adaptability daily.
I understand that my plans may need to change at a moment’s notice due to my son’s health needs, and I have learned to navigate these challenges with resilience and grace. Caring for a child with Batten disease isn’t an easy journey, but I have found strength in embracing my role as a caregiver while also nurturing my dreams and goals. Through this balance, I can find fulfillment and happiness, both as a mother and as an individual.
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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