My son was diagnosed with a rare genetic eye disorder after his 4-month well-child visit. I went to that appointment hoping to see that his weight was getting closer to the norms for his non-adjusted age, like we did every visit since he came home from the NICU.
I thought we were past the hard stuff.
I left with a referral to a pediatric ophthalmologist, who squeezed us in the next day.
Then he referred us to a specialist since what he found was beyond his specialization.
There’s only one pediatric retinal specialist in the entire pacific Northwest. Within two weeks of that well-child visit my son was scheduled for surgery with that surgeon.
Under anesthesia they found what they expected—he has a rare genetic disorder that causes retinal detachment, which in turn can cause blindness. The surgery was an attempt to stop its progression and minimize the damage to his vision. He had surgery on each eye a week apart from one another to minimize how much time he was under anesthesia.
I was desperate after each surgery: did it work? When will we know? How did it go? How will we know?
“If we win” is what the surgeon told me afterward. “If we win—if this works, he should be able to navigate his environment. Read on an iPad. Maybe be in a normal classroom.” If we win.
I asked every question I could think of.
I googled everything I could think of.
My burning question: What will my son’s life be like?
Standing in his room at the children’s hospital the day after his second surgery, something broke. Broke—not like snapped, not like a fracture, but a softening. Like I’d been tugging on a rope that was under a boulder, trying to move the boulder to find the answer to my question: what will my son’s life be like?
No One Can Tell You
I finally realized that morning, standing around his hospital crib with hot air balloon receiving blankets as sheets and a pulse oximeter taped to his foot—that the surgeon couldn’t tell me. This specialist of specialists. The Only One in the region. The man who literally got to see inside my son’s eyes—twice—whose hands delicately guided surgical tools to remove my infant son’s lenses. To place a tiny silicone band around my son’s eyes. This gentle, brilliant man who only wanted to win, for us, for our son.
He doesn’t know what his future will be like. He doesn’t know what winning means.
And when I realized that he couldn’t tell me, I realized that no one can tell me. I can’t know.
And I wouldn’t be able to know even if his eyes were just like mine.
Maybe this is a realization every parent has to come to—we just don’t know what our child’s future will be like. We do the best we can. We provide for them. We feed and clothe and nurture them. We hold them just enough but not too much. We read to them. We talk to them. We teach them.
But we can never know what their future will hold.
Big Lessons in Cheesy Clichés
I understand why some things are cliché. “Only time will tell” and “The future is unwritten.” We are walking through a blank canvas, line drawings and colors tracing and splashing across the page just as we enter it. Not sooner. Not a second sooner.
There are things we can’t know. And the second we accept that, we can rest. We can put down the rope, watch it go slack, no longer straining under the effort of the impossible pull. The answer is not under the boulder anyway.
Then we can put that energy into the now—the child before us. And try like hell to keep on winning.
Have you learned a worthy parenting lesson worth sharing?
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