The part of rare disease care they don’t prepare you for

There is a moment that happens after every appointment, infusion, or procedure that people don’t see. From the outside, it may seem like the hardest part is over. The appointment may have gone well, or the treatment may be done. There may be a sense of relief, even if it’s a small one.

People might say, “Now you can relax.” But the truth is, this moment isn’t an ending, but rather a transition. It’s the part no one prepares you for, where a different kind of care begins.

Infusion days with my son Juju, who has late infantile Batten disease, are long. They require planning, patience, and a level of emotional strength that I’ve learned to carry without even thinking about it. I go in prepared and ready to advocate. I pay attention to every detail while staying strong for him. I hold it together, even when my heart wants to do the opposite.

Recommended Reading

Nov. 5, 2025 Columns by Cristina Vargas

How Batten disease parents can drive change through advocacy

Then we go home. That ride feels different every time. Sometimes it’s quiet and heavy; other times, it’s filled with small conversations, trying to keep things light. In the back of my mind, I am already shifting into the next role.

I am not just Mom in those moments. I become nurse, monitor, comforter, and protector all at once. Some families call it the “hangover” — that period after treatment when everything catches up. Juju’s body needs time to recover from something he never chose.

I watch him closely during this time. I notice every little change and adjust everything around it. Entire days, and sometimes entire weeks, revolve around how he is feeling. There is no clocking out from that role. It becomes part of our everyday life.

The parts of caregiving people don’t see

This type of care doesn’t remain behind hospital doors; it follows us home and settles into our routine. It shows up in the quiet moments that no one else sees. Amid all of that, life doesn’t pause. Everything keeps moving forward.

I still have other children who need me. I still have responsibilities waiting to be handled. Calls need to be made, and messages need to be answered. Things still need to get figured out. All of it continues as I make sure Juju feels safe and cared for.

It becomes a constant shift: One moment is spent managing medical care, and the next, trying to bring a sense of normalcy back into our home. Sometimes that looks like letting Juju rest as long as he needs. Sometimes it looks like celebrating the smallest win.

People see the appointments and hospital visits, the strength it takes to show up. What they don’t always see is the after — the late nights, the quiet worry, the way my mind never fully turns off.

They don’t see how much of this journey happens behind closed doors. That part matters just as much as everything else. In those moments at home, healing continues. Comfort becomes its own kind of medicine. Love fills the spaces that treatment cannot reach.

Being a rare disease parent means learning how to live in two worlds at once. The clinical world and the personal world exist side by side. Life becomes both structured and unpredictable at the same time. I’ve learned to be strong while still allowing myself to feel. That balance is part of who I am.

There is no training for this role, no manual that explains how to carry it all. It is learned in real time through love and instinct. Strength reveals itself in ways I never expected. Still, I keep showing up.

I show up the next day, even when I am tired. I show up for the next appointment and the next challenge. I show up for every moment Juju needs me — not because it’s easy, but because it’s what love looks like in this life.

Care doesn’t end when we leave the hospital. It continues in the quiet and unseen moments, living in the everyday acts of love and protection. Parents like me carry it every single day.

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.