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Opinion | Ben Jackson

When your sick kid becomes a sick adult

Globe Staff; Adobe

In December, my daughter Emma will turn 18.

This is, I imagine, a momentous occasion for any parent. It’s a transfer of power, handing the reins of life to our greatest creation, and watching them ride off toward a horizon of their own making. It is a wistful mix of nostalgia and hope, but if we’ve done our jobs well it is buffered by the confidence that comes with knowing we’ve equipped our children to face what the world will throw at them.

For those of us with medically fragile children, though, that looming age of majority appears a near-unscalable cliff. Rife with crumbling handholds, swarmed by stinging insects, and full of unseen dangers, it is the definition of terror.


The last time I watched Emma nearly die was in mid-January. She walked into an ambulance struggling to breathe and was wheeled out of it unconscious at the other end of the ride. Her chest hitched for air that wouldn’t come. Glassy eyes pointed in different directions as doctors and nurses and respiratory therapists desperately tried to figure out what was wrong.

“I don’t like what her heart is doing,” one doctor said as another used a hand-drill to force an IV into the marrow of her shin. Finally, an X-ray revealed the most critical problem: Her right lung was entirely collapsed. One side of her chest was just empty — the blackest possible void where a ghostly lung should have been. The other side of her chest held things that shouldn’t have been there: The vacuum created by the collapse forced her trachea into a terrifying curve, her heart and esophagus and viscera in the wrong place.

As one doctor futilely tried to ventilate her with a bag, another told me what he needed to do: Insert a needle into her chest to release some pressure, then surgically insert a tube into the space her lung should have been to release the rest. The risk of not doing it was death. That was also a risk of performing the procedure.


It’s what those of us with sick kids know as “informed consent.” It’s great in theory, and broadly the right thing to do. When you are watching your child die, however, it seems an incomprehensible waste of time.

“We consent,” I blurted halfway through his spiel. “We consent, just save her.”

They did. This time.

And any of the myriad other times — starting before she was even born. Life as her parent has been a litany of life-or-death decisions. There was the time she stopped breathing after a surgery. The time we had to decide whether to authorize surgery that would let her survive her birth or allow her to die under anesthesia. The time we had to decide if the chemo that would probably kill her was a better path than the cancer that would probably kill her. And on and on.

You make those decisions because — unless you are a highly trained, multidisciplinary medical professional — you can do nothing else. I can’t cut between her ribs and place the tube in Emma’s chest. I can’t determine the course of treatment for an almost unheard-of cancer. I can only decide.

As Emma aged, it felt like this was the one part of her burden I could lift for her. That if I made the wrong decision, she would not have to carry the guilt. That the horror of those decisions were mine to heft. She had simply to survive.


And now, those decisions are about to be stripped from me.

Those who are 17 know with an absolute certainty that 18 means adulthood. Those of us who have attained middle age know that 18 is a baby.

We are both wrong, of course. But even if we were not, 18 is the arbitrary line determined by people long dead that says I can no longer spare my daughter from the decisions of her future. The burden of her care is hers to carry, and hers alone.

We’ve trained for this. During the many long months of her life she’s spent in Mass. General’s pediatric ward, her doctors have become increasingly insistent on spending time alone with Emma. On taking her word over mine. On asking her input, on informing her well enough to consent. These are the necessary calisthenics for both of us.

But now, as the day approaches, they feel woefully inadequate.

When I talk to other parents who walk similar roads, I am struck by one thing: We are defined by these decisions. It is where we discovered our own mettle, and while our internal iron has invariably rusted over the years, this core remains strong. We know who we are in this world. We know how to do this.

I don’t know who I am when those decisions are not mine.


I suppose many parents need to rediscover themselves when their children are children no longer. But — and for this I am truly happy — very few of those parents need weigh down their children with the heft of their own mortality. I wonder if Sisyphus came to love the boulder, to need it. I wonder if, after a time, he could have climbed a mountain without it.

Ready or not, I’m about to find out.

Ben Jackson is a writer.