On the morning of my husband's first Father's Day, I sat hunched over my laptop, feeling something shift and desperately wishing I could stop it.
The video showed a baby doing the same jack-knife movements four-month-old Collin had been exhibiting. The video description advised packing up and going straight to the hospital. And the woman who posted the video wrote this:
"There are no more easy options for your child."
The words rang in my heart as unwelcome and true, though I didn't know the extent of it yet. It's a line that has both haunted me and provided a useful handle to grab onto when trying to explain what's so hard about this journey.
But Collin has been thriving in recent months and years, so there haven't been many decisions to make. Consequently, I had forgotten the magnitude of that first lesson when we traveled to a reputable children's hospital for another surgeon's opinion on Collin's hip surgery. We went prepared to move forward, assuming the doctor would heartily back our first recommendation: do major surgery on both hips, and the sooner the better.
What we got, instead, was something much more nuanced and complicated. The doctor wasn't so sure this surgery would improve things for Collin in terms of function -- the sitting, standing, step-taking part of his life. Maybe it would, but maybe it wouldn't. This surgery was really about alleviating pain. But Collin is not in pain yet and we can't be certain he ever will be. If the pain comes more than 6-12 months from now, it will be too late to do this surgery. Then he might need a different surgery, one with a rougher recovery. There is no way to know for sure. With every question we asked, the answer seemed less clear.
When the doctor stepped out of the room to give us a chance to talk, I stared at my healthy, smiling, kicking boy. Then at my husband, also trying to wrap his mind around what we had just heard. Then at the nurse, her brow furrowed with compassion.
I said out loud to the room, "So, we have to make an impossible decision and make it soon."
And as the words left my mouth, I flashed back to that moment seven years before, when I stood up from the wicker chair, clutching my laptop with its looping videos of seizing babies. This was the same life I had been living all along, I told myself. Collin was the same as he had been yesterday, I told myself. But as I walked toward my waiting husband and son, I could feel myself stepping over a threshold I would never be able to cross again.