Embracing my son’s unique journey as a new school year begins
Second grade will look different for Juju, who has Batten disease
My precious son, Juju, took a significant step in his life recently when he started second grade.
Earlier this year, Juju became an older brother when my daughter, Serenity, was born with a congenital heart defect called pulmonary atresia. Between this new role, more responsibilities at school, and the new environment of a new grade, this school year will be particularly different for my son, who lives with late-infantile Batten disease (CLN2 disease).
This milestone brings a whirlwind of emotions for me as a mother: excitement, hope, and admittedly, a little anxiety. While other parents might have a more conventional experience preparing their children for school, I recognize that Juju’s journey is uniquely different, something I’m learning to embrace fully.
Watching Juju begin the new school year fills me with pride. It’s a chance for him to explore new environments, meet new friends, and engage with the world in ways that are so important for his development.
However, I also know that the road ahead won’t be the same as it is for many of his peers. Juju’s needs are specific, and navigating the educational landscape with a rare disease like Batten can present challenges that other parents may not face. But instead of dwelling on these differences, I celebrate the uniqueness of Juju’s journey.
Thriving in his own way
In a world that often encourages comparisons, it can be tempting to look at other parents and their children and feel a sense of inadequacy or doubt. I’ve wondered if I’m doing enough for Juju or if I should be worried about milestones that other kids seem to reach effortlessly. However, I have come to realize that every child’s path is distinct, and comparing ourselves with others only diminishes the beauty of Juju’s individual experience. His journey through school will be shaped by his strengths and challenges.
He may not learn in the same way as other children, but that doesn’t mean he won’t thrive in his own right. I’ve learned to appreciate the little things — the joy in his laughter, the curiosity in his eyes, and the moments of connection that make our time together so special. Each day is an opportunity to celebrate his progress, no matter how small.
As we prepared for this new chapter, I took the time to communicate with Juju’s teachers and the rest of the school staff. They must understand his needs and how they can best support him throughout his educational journey. Advocating for Juju is a crucial part of this process, and it reassures me to know that there are people who care deeply about his well-being and development.
I trust that they are creating a nurturing environment where he can explore, learn, and grow. It’s also vital to foster an inclusive atmosphere. Inclusion isn’t just about placing Juju in a classroom, but also ensuring that he is respected, understood, and celebrated for who he is. I look forward to seeing how his classmates will learn about empathy and kindness through their interactions with him.
Together, Juju and his teachers can create a space where differences are not merely accepted but embraced, enriching everyone’s experience. As my son embarks on this journey, I am reminded of the importance of self-compassion. I must allow myself to feel the emotions that arise — the worries, the hopes, and the fears — without judgment.
It’s OK to feel overwhelmed at times. What matters is how I choose to channel those feelings into positive actions for Juju. Rather than comparing my journey with that of other parents, I focus on the joy of witnessing Juju’s growth, no matter the pace.
As I watch Juju take his first steps into this new environment, I’m reminding myself that this is his journey. It may be different from others, but it’s filled with potential and promise. I embrace the lessons that Juju teaches me every day about resilience, love, and the beauty of being different.
In a society that often emphasizes conformity, I celebrate my son’s uniqueness and the extraordinary path he walks. I look forward to seeing how Juju will shine in his own way, and I’m committed to supporting him every step of the way, proud of the wonderful journey that is unfolding before 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.
About the Author
Anne Fitzgerald
Beautifully said.
Cristina Vargas
Thank you so much Anne! <3