Love Is Not Rare: Why I'm Writing About My Son's Tracheostomy

Never Make Careless Wishes — the Universe Grants Them

As a kid, I dreamed of becoming a writer. Growing up, I learned that fancy language alone only produces something showy — without a story carved out of real suffering, you can’t write anything that actually moves people. So I made a wish: that I’d be given a life rich enough, hard enough, to write about. Twenty years later, the universe delivered. Except the “prize” arrived in the form of a one-in-a-billion rare disease — my son.

If I Could Turn Back Time, Would I Choose Differently?

I still remember the four months my son spent hospitalized with pneumonia, unable to breathe on his own, unable to come off the tube. The doctor suggested a tracheostomy. We didn’t have another option — staying intubated long-term meant repeat infections and, eventually, death; the trach was the only way forward in that moment. Four months after the surgery, the whole-genome results finally came back: a rare disease, Taiwan’s first documented case, and no cure. My son would spend the rest of his life on a ventilator, whatever that life turned out to be.

This series is written for families weighing a tracheostomy decision, families caring for medically complex children, anyone whose friends or relatives are going through something similar, and volunteers or companies who want to help.

My hope is that laying out what long-term care actually looks like will let families let go of treatment that no longer helps, and let their loved ones go in comfort when it’s time. I want to point families toward support groups and home-care resources. And, honestly, I’d like to see less medical care that prolongs suffering rather than life — so the health insurance system doesn’t collapse, and its resources go to the people who need them most.

Does modern medicine extend life, or extend suffering?

Why Share Something This Private?

When you’re staring down a tracheostomy decision for someone you love, panic is the only thing you can feel clearly. Most families end up agreeing to the surgery because no doctor is going to ask you to give up on your family member. What no one tells you is what life afterward actually tests you on: a single piece of mucus caught the wrong way can end a life in an instant. Round-the-clock care, the financial and emotional weight of long-term caregiving — it will make you question whether advanced medicine is extending a life, or extending how long someone suffers.

Almost everyone I know has an older relative who’s had a tracheostomy. Deciding to let an elder go is harder than anything — there’s always some rarely-seen relative who reappears at exactly this moment to call you an unfilial child for wanting your father dead. Taiwan’s health insurance spends NT$21 billion a year on respiratory care, and Mayor Ko Wen-je once joked that Taiwan runs the world’s largest “vegetable garden,” since so many tracheostomy patients exist in a permanent vegetative state. One tracheostomy patient can cost the health system NT$22 million over nine years of hospitalization — unable to speak, fed through a nasogastric (NG) tube, unable to live and unable to die, a soul locked inside a body that’s already given out.

Love Is Not Rare — Let’s Walk This Together

Families waiting for medicine to catch up are often desperately alone: where do you even find other parents who’ve lived this? Facebook won’t surface the groups you need, because every community for medically complex families is private, invitation-only. I got lucky — a kind nurse introduced me to other parents, and that’s how I learned there were LINE groups quietly trading notes on respiratory care. These closed communities exist to protect the children’s privacy, but that same wall shuts out families who need help finding it. Not knowing enough leads to decisions you can’t take back — like not signing a home-hospice directive in advance, which can mean a loved one who dies at home is autopsied to determine cause of death; or not knowing that calling an ambulance means resuscitation and defibrillation whether or not that’s what the family wanted, denying the chance for a peaceful death.

So my hope for this series is to help families evaluate the tracheostomy decision and understand what comes after, and to use my own experience to show other medically complex families the paths to the resources that exist. And I hope companies serious about social responsibility will step up to help families like mine.

Thank You for Choosing Me as Your Mother — for Giving Me This Rare Mission

Our son spent half his days, as a two-year-old, in a cold hospital room, and I was living through what it means to be a caregiver to a medically complex child in real time — which is maybe why all of this cuts so deep. I’m someone who hates showing vulnerability; the thing I feared most was hearing “hang in there” or “you’re so strong.”

Why did a one-in-a-billion chance land on us? There were stretches where the weight of it nearly broke me. But if every misfortune carries a hidden gift inside it, I want to turn this pain into something useful — so families in the same position have to carry a little less of it.

Facing Down the Fear, and Doing It Anyway

At a gathering, I met other parents of medically complex children whose kids were already in elementary school. I couldn’t help wondering — did I, someone barely a year into this, have any right to share what I’d been through? Would any of this actually matter to anyone?

Becoming a mentee in the Chinese Leaders 100 program opened doors I hadn’t expected. I helped found an association for families of medically complex children, and talked with my mentor about writing a book — but I still couldn’t make myself sit down and write.

Taking my mentor’s writing class was the first time I ever told my story out loud, in public, to people who barely knew me — it took two years to work up the nerve. Once I did, the response was overwhelming. A fellow mentee told me he’d once cared for a tracheostomy patient in the hospital — when he lifted the patient’s body for an X-ray, the look of pure, unspeakable suffering on that person’s face has stayed with him ever since, something he still can’t bring himself to revisit. My mentor told me this mattered, and urged me to be brave enough to follow through.

With everyone’s encouragement, this piece finally exists. I hope that going forward, we can pool everyone’s different strengths to help families like mine — one fellow mentee specializes in helping people find spiritual grounding, which caregivers desperately need; another works as a home-care designer, planning wheelchair-accessible layouts, which every long-term care household needs. Beyond writing this series, I hope to keep working alongside my fellow Chinese Leaders 100 mentees on projects that give back.