How we celebrate Halloween with medically complex children
Life looks different with Batten disease, but we still find ways to make it special
When October rolls in, the world seems to transform overnight into something magical. Pumpkins glow on porches, kids giggle in costumes, and for a brief moment, life feels suspended in a cozy, candy-filled haze. However, for families like ours that are raising children with Batten disease and other complex medical conditions, keeping up with the spooky season can feel less like a treat and more like a tricky balancing act.
Still, year after year, we find ways to make it special. Even though life looks different for us, the heart of Halloween — the joy, creativity, and connection — belongs to all of us.
When your child uses a wheelchair, has limited vision, or is nonverbal, it can be hard to do the traditional version of trick-or-treating. Bumpy sidewalks, crowded events, or flashing lights might not be possible or safe. Accessible doesn’t mean less magical, though. Sometimes it just means redefining what celebrations look like.
Adapting the celebration
You can do a reverse trick-or-treat, where friends or neighbors come by to drop off candy or sensory-friendly toys at your home. If your child is in the hospital during the holiday, bring the fun to them by decorating their room with pumpkins and cute ghosts.
Let nurses or caregivers join in so your child still feels part of the celebration. What really matters isn’t how big the party is, but how loved and included your kid feels. Those memories stay with them forever.
Finding a costume can be tough when medical equipment is involved, but creativity makes it fun. One year, I turned my son Juju’s wheelchair into part of his vampire costume by covering it with spider webs and little spiders. It looked amazing and made him so proud.
If your child isn’t comfortable in a full costume, you can still join the fun with themed shirts, soft hats, or cozy blankets with festive prints. What matters most isn’t how perfect the outfit looks, but that your child feels like they’re part of the moment. Sometimes the best costumes are glow-in-the-dark pajamas and pumpkin socks that make everyone smile.
For those of us raising medically complex kids, planning starts early. We must check medications, time feeds, and ready emergency supplies. Halloween night might not be long, but it takes a lot of energy and coordination.
Yet it’s in those small, carefully planned hours that the most powerful memories are made. There’s something healing about watching your child’s face light up, even for a few minutes, when the world feels normal again. So, if you’re feeling the pressure, please don’t.
Prepare early and pack smart, but also give yourself permission to adapt. If the outing is cut short, it’s OK. If you end up celebrating at home, that’s OK, too. The success of the night isn’t measured in candy bags. It’s measured in smiles and calm moments that remind you that your family’s version of Halloween is just as beautiful.
To all the parents out there balancing caregiving, marriage, work, advocacy, or just the chaos of everyday life, I see you. Sometimes it feels like you need a superhero costume of your own. The exhaustion is real, and there are moments when the decorations stay in the box. That doesn’t mean you’re falling short. You’re doing more than enough.
My husband and I have learned to find joy in the little things. A simple movie night with popcorn and soft Halloween music playing in the background has become one of our favorite traditions. Being a rare disease parent has taught me that joy doesn’t have to wait for perfect moments.
It can exist right in the middle of the hard stuff — in the alarms, the feedings, the paperwork, and the late nights. Halloween, like life, doesn’t have to be all or nothing. It can be simple, gentle, and still absolutely full of heart.
So, whether you’re decorating IV poles, rolling down hospital hallways, or watching your child smile at a single glowing pumpkin, please know that it’s enough. You’re creating memories that matter.
This isn’t just for rare disease parents; every mom and dad needs this reminder. It’s OK to slow down. Your plans don’t have to look like the ones online. What your kids remember most isn’t how things looked, but how they felt. They’ll remember your laughter, your love, and how you made the moment special just by being there.
Take a deep breath. You’re doing great. The decorations don’t have to be perfect, and the costumes don’t have to match. What matters is that your love fills the room.
This Halloween, find joy in the small things, the giggles, the glow of pumpkin lights, and the peace that comes from being together. Even in hard times, there’s always light to be found. You’ve got this!
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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