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Birth
My son was born premature, weighing under 1,600 grams, his face scrunched up so tight.
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The fifth month
His cry was faint, and his legs barely kicked. I had a terrible feeling, and began a year of hospital visits, booking an appointment in every department there was.
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Ten months old
At ten months old, he sat in his stroller, happily being wheeled in loops around the nursing station. Then, suddenly, his lips turned blue and he went into respiratory distress.
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Emergency intubation
When the mucus could not be cleared, his breathing deteriorated rapidly.
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Two months on the tube
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.
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Day 76 in hospital
Today is your first birthday. We brought a cake and a tiger-god hat into the ICU to celebrate with you.
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Four months after the trach
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.
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Over two years
Over two years, I signed more than a dozen critical condition notices.
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Another resuscitation
Yesterday his heart rate dropped to 30 and he needed two minutes of CPR.
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Back home
So suctioning has no “I’m too tired tonight” option, and it cannot be put off — his oxygen is dropping, and his life is right there at the edge of the cliff.
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Finally able to go out
One of my dreams has always been to take my son out into the world: to show him how big it is.
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When we could not hold up
I’m not strong at all — thinking about how much a baby this small has had to endure, I cry more than I’d like to admit.
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Three years old
Happy 3rd birthday to my son — we made it past one, the age the doctor warned us kids with SMARD1 don’t survive.
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The Christmas party, four years on
And then my son, with that handsome face of his and a smile like no other, was wheeled into the Huanhu party.
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Five years old
My son just turned five.
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Eight years old, now
The baby the doctor said wouldn’t live past one, the baby who’s been in and out of the ICU more than 20 times — somehow, impossibly, he is eight years old.
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Thank you for teaching us to see the rare landscapes of a life, for walking us through trial after trial, and for teaching us to treasure every moment.