Four Years to a Christmas Party: What It Takes to Get a Ventilator-Dependent Child Out the Door

Here’s how hard it is for a child with a tracheostomy to leave the house: first, you need a custom stroller or wheelchair costing anywhere from NT$120,000 to NT$170,000 (roughly US$4,000–5,500). Then you need to bring an oxygen tank, a suction machine, suction catheters, and the ventilator. Then you need an accessible taxi that can actually fit a wheelchair, on the day you happen to need one. And most of all, you need to steel yourself for the chance that his oxygen saturation could crash halfway there and he’d need emergency suctioning — or that you miscalculated and the oxygen tank, good for only three hours, runs dry before you get home. A lot of tracheostomy families never leave the house at all. Some kids go their whole lives barely seeing daylight — about the most scenery they get is the ceiling of an ambulance, since the moment a trach kid gets sick, an ambulance straight to the ICU is standard procedure.

The Taiwan Huanhu Children’s Association invited us to their Christmas party when my son was one year old, hoping to encourage families of ventilator-dependent children to get out and be part of a crowd again. That first invitation, I got hit with a wall of doubt — what if his weak immune system caught something, what if mucus blocked his airway halfway there and that was it. So the first time, my son’s grandmother, his father, and his sister went in his place, without him. Then the pandemic put the party on hold, so it’s been four years since that first invitation — and I still remember how it hit me, seeing other ventilator families for the first time: one family had an eight-year-old sibling who already knew how to suction her little sister; one trach kid was tearing around the room in a wheelchair. Their lives looked nothing like anyone else’s, and yet their happiness looked exactly the same as anyone’s. We ate good food, drew raffle prizes, and the parents traded notes on caregiving. That day was short, but I’ve kept it with me ever since — it became a source of strength that carried me for years.

In 2022, my son finally went himself. It took us four years to fight this battle: first letting the rest of the family go, so they could see other trach families getting out and build up our confidence; then working through the practical obstacles, like getting the home nursing service to lend us an oxygen concentrator and tanks. And then my son, with that handsome face of his and a smile like no other, was wheeled into the Huanhu party. His sister made him a Christmas card and wrote him a Christmas song — the card had a drawing of just the two of them (their parents didn’t make the cut, apparently the paper was too small) — and the lyrics carried a wish that will never come true: “I hope my brother’s sickness gets better soon.”

Four years later, my son has grown, and so have we. We’re a little tougher now than we used to be. There are 365 days in a year, and Christmas is only one of them — the joyful days are brief, but they carry us for a very long time. My deepest thanks to the Taiwan Huanhu Children’s Association for organizing something this wonderful, and to the home nursing service for all their help.

Wishing everyone a year-end spent with the people you love, sharing good times together. Whatever you’re up against right now — keep going. There’s always a way through.