For many families, the holidays arrive with twinkling lights, familiar rituals, and easy joy. But for families like ours, caring for a child with complex medical needs comes with a different kind of weight. A softer glow. A quiet magic. A joy woven with grief.
I used to think the holidays had to be hectic: loud houses, long tables, cousins everywhere, trays of appetizers disappearing the moment guests walked through the door. Brie with pepper jelly was always a favorite. Years ago, December meant matching pajamas ordered in bulk for the entire extended family. Now it’s just the four of us – sometimes six if we match our dogs, Hachi and Mochi – our little circle that holds everything together.
The holidays look different now. But they mean something. Even for families like ours, the season brings a sense of hope and a chance to be together.
At our home, the holiday season begins early. September is Childhood Cancer Awareness Month, and it’s also the month my husband Mandeep and I share our birthdays. It is the month Kabir and Ayaan share a transplant birthday too, because Ayaan—Kabir’s younger brother—was his bone marrow donor.
This September, instead of celebrating five years in remission, we received news no parent is prepared for.
Kabir, our older son, is five years post-bone marrow transplant. Five years cancer-free. His fight has been long, spanning nine years and three battles with PH+ ALL, a high-risk leukemia. This should have been a milestone of freedom. Instead, his care team explained that because his immune system hasn’t “reset,” they don’t think it will. They told us the next tiers of treatment are very risky. They aren’t sure how much more his body can take.
Hearing that as a parent shifts the ground under your feet.
This is another holiday season where I am afraid that if we don’t find the right treatment soon, we may not get another Christmas with him. It hurts to write that, but it is the truth that many families live inside quietly.
Diwali used to be bright and noisy, full of mithai and relatives. Now the light feels gentler, more intentional. I found myself remembering a very different Diwali – the one when Kabir spent more than 100 days inpatient after transplant. My husband and Ayaan stood outside the hospital, looking up at the sixth floor, waving from the sidewalk because they couldn’t go up.
This year, we lit diyas again – this time at home and at the San Jose Sikh Temple. We stood together, fragile but still a family. We reminded our boys that Diwali is the promise that light always returns.
Halloween used to be one of Kabir’s favorite days. But for the past few years, he hasn’t made it to a single door.
Most people never notice uneven sidewalks, steep driveways, or front steps. But when your child uses an electric wheelchair, the world shows you how inaccessible it really is. Even with his power chair, Halloween is exhausting. The costumes add discomfort to an already painful reality. We watch from the curb while kids run ahead. His brother asks for an extra treat at every door, but Kabir only watches now. It breaks our hearts. He deserves to be a kid.
Thanksgiving might be Kabir’s favorite holiday. He wants to be a chef someday. We cook all the foods he loves – the charcuterie board he gets excited about, the desserts he carefully chooses each year. But this year, every special meal carries an unspoken question: Do we have decades of holidays ahead of us, or is this one of the last times we will make his favorites?
No parent should have to think that.
Thanksgiving once meant long tables full of extended family. Our circle has gotten smaller over the years – illness does that. People drift, or don’t know how to show up, or simply can’t understand the weight of a medical childhood.
But love doesn’t need a full table to be real. Sometimes it’s four chairs. Sometimes it’s a parent heating another heat pack on another hard night. It is still a home filled with warmth. And we all share the same thing at the top of our gratitude lists: him here with us.
Our Christmas tree is already up – weeks earlier than usual. We are normally late. The ornaments will wait until Kabir has the strength to hang them, but the tree is there. No one has said it out loud, but we are all thinking the same thing: Don’t let this be his last Christmas.
And yet in all the fear, Ayaan still finds magic. He is counting down to the return of our Elf on the Shelf with excitement. His joy is real and pulls us through the harder moments. One Christmas years ago, when Kabir finally made it home after months inpatient, Ayaan believed fully that Christmas magic was what brought his brother back. Sometimes, I still believe it, too.
The boys have had heavy conversations lately. Conversations no child should ever carry. Kabir has started a “Bucket List.” Ayaan helped him write it one evening. But most days, Ayaan cannot let himself think about what it means.
But some nights the truth spills out. Recently, he said softly, “If Kabir dies, I’m really going to need you both.” I will never forget those words.
Kabir’s condition is rare and complicated. He survived cancer, but he now lives with severe post-transplant immune dysregulation and constant pain. His care requires many specialties, and we haven’t found the right answers in California. That means we will begin traveling out of state to national experts. It is terrifying, but it is the only path forward.
We have been here before, fighting for his life. Fear is a familiar companion. But both boys are older now. They understand more. Some days, the toll on their mental health is the heaviest part.
This holiday season, I am reminding myself that light does not need to be loud to be real. Sometimes it is just enough to get you through the day.
But it is still there.
I see it in Kabir’s courage, even on the days he cannot stand—when he tells us he still wants to live, even if it means more pain. I see it in Ayaan’s humor, somehow still intact, and in his gift for making his brother laugh. I see it in the way my husband and I keep showing up, even through exhaustion. I see it in Hachi and Mochi, whose simple presence is its own kind of therapy. And I see it in every person who continues to check on us – physicians across the country answering a mother’s urgent emails, loved ones who still care nine years in, and kind strangers who’ve joined our circle along the way.
People love the idea that a new year brings a fresh start. For families like ours, January doesn’t erase medical challenges. But I am still looking forward to a few things:
- Getting Kabir in front of national specialty teams who might see what others have missed
• A few more good days, and more chances to check things off his “Bucket List”
• The hope that next December we will still be here together, hanging the ornaments again
The holidays don’t always shine. But there is still something worth holding onto: the four of us in one room, the hope that we get another year, the knowledge that love—quiet, fierce, imperfect—has kept us standing this long. Maybe that’s our holiday magic now. Not brightness. Nowhere near perfection.
Just love that refuses to quit.
