Unbreakable: How I find strength as a parent even while I’m sick

Being sick is hard, no doubt about it. But being sick while parenting JuJu, my son who battles CLN2 disease every day, is a fight on two fronts. There’s no pause button, and there are no shortcuts. My heart stretches further than I ever thought it could.

JuJu is my warrior. CLN2, or late-infantile Batten disease, is a rare and cruel illness that is slowly stealing his ability to walk, talk, and see. But JuJu’s spirit — his laughter, his stubborn determination, those moments when he lights up a room — remind me every day why I fight so hard. As his mom, I’m his caregiver, his advocate, his nurse, and his biggest fan, even if that role feels invisible to everyone else.

When I’m sick and my body feels weak, the weight of caring for JuJu feels even heavier. A simple cold can feel like I’m scaling a mountain. But the CLN2 treatments, the therapy, the constant watching and waiting — none of it stops because I’m tired or hurting. Still, here’s the truth: No matter how sick I am, no matter how hard it gets, I show up for JuJu. Because he deserves every bit of strength I can give.

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I’m not alone in this effort. My husband, Jonathan, is my rock. Even when he’s sick himself, he’s the first to care for me and our kids. He holds us together, steady and strong, when everything feels like it’s falling apart.

Then there’s our princess, our daughter Serenity, who’s fighting her own brave battle with pulmonary atresia with intact ventricular septum. She’s a reminder of hope every time she smiles or hits a new milestone. And our other daughter, Faith, is a teenager fighting silent battles with her mental health. She teaches me that strength isn’t just about what you see — sometimes it’s about what’s inside.

There are days when the tears come, not just because of what CLN2 disease takes from JuJu, but because of how hard it is on me. Those tears are soaked in love and help make me fierce enough to keep going.

That’s what drives me — the hope, the fight, the love. I’ve learned to juggle it all — taking care of my own body while holding JuJu, managing treatments while fighting exhaustion, supporting Serenity, and standing beside Faith. JuJu’s journey is his own. I refuse to fall into cold statistics or fear.

This fight isn’t just about medicine or symptoms. It’s about holding on to hope when things feel darkest, whispering promises of tomorrow when today is almost too much.

The emotions are messy. Guilt creeps in — guilt for needing rest, guilt for feeling overwhelmed. But to take care of my children, I have to take care of myself, even if it’s just a quiet moment to breathe.

To every parent who’s sick but still fighting for their child with CLN2 disease or any other battle, know this: You are seen. Your exhaustion, your pain, your love — they mean everything. When our bodies weaken, our hearts grow stronger. Through that strength, I keep fighting for JuJu, Serenity, Faith, Jonathan, and every single breath and heartbeat.

JuJu is my light in the darkest storms. Serenity reminds me of hope’s power. Faith shows me what resilience really means. And Jonathan is the steady foundation holding us all up. No matter what, being here, truly here, for them is the fiercest act of love I will ever know.

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.