Another piece written for The Mighty.
A Panera Bread Employee’s Simple Remark Turned Our Dark Day Around
This is the story of how someone we didn’t know turned one of our toughest times into one of our best days.
When you have a child with Menkes disease, you spend more time than you’d like in the hospital. At its best it’s stressful; at its worst, I’m ready to bark at people for the tiniest misstep. How could they be so insensitive? Do they not know what I’m dealing with? I’m in the ICU of a hospital; isn’t that enough of a clue?
Even on a good day, people can say the wrong thing about my son, Lucas, and set my fingers to white knuckled claws. It’s easy to say the wrong thing. Too easy. Talking to us about our son can be a trap. My wife and I know that’s unfair. Not surprisingly, a whole lot of people avoid talking about Lucas. They want to stay clear of the trap. But then we resent them for ignoring our precious boy. Trapped if you do, trapped if you don’t.
I can’t even recall the reason for this one particular hospital stay. I think we were finding out Lucas wouldn’t be able to eat by mouth anymore. He’d need surgery for a G-tube. He had massive bladder diverticula. Two bad news whammies on the same day. Tensions were high; our moods were grim.
One of the minor problems with spending too much time in a hospital is eating too many meals in the hospital café. We’d worked our way through all the menu items more than once. If we had the luxury of more than a few minutes to eat, we could cross the street to a sports bar, a Starbucks, and we heard they’d just opened a new Panera Bread. On that day, we had time between appointments and Lucas was cleared to leave the building, so we eagerly tried the new dining option. Luckily, everything went smoothly. Had some one messed up our order, we would have snapped.
As we sat with our meals and Lucas in his wheelchair, we did nothing special. I think we hardly spoke. We were too spent. Maybe we doted on our boy a bit more than usual. A young man who worked there came over to us to say something. It wasn’t his job. We’d already been served by someone else.
“I just want you to know I have a little brother with special needs, and I think you guys are doing a great job.” That was it. One perfect sentence. I almost cried on the spot. I’m crying now, three years later, and have every time I recall it. His name was Julian. He didn’t fear the trap. Maybe he sensed how much we needed a boost. Maybe he still had the fearlessness of youth. He might have been 20 years old at most but seemed to have more maturity and perspective than my wife or I at twice his age.
He said a few more things about what it must be like for us. And he got them all right, on key. I managed something in the way of a compliment like, “You saying that made my day.” And then he shared that he too spent a lot of time at hospitals. His younger brother has a rare condition called Dandy-Walker syndrome. And it all made sense.
Yes, he was a stranger, but he was one of us. He’d walked our road. No wonder he could avoid the traps. He turned a dark day into one I’ll never forget. I’ve seen him there since, without my son at my side, and he remembers and asks about Lucas by name. It was such a small thing with such a huge impact. All he really did was let us know he knew our path was rocky and he thought we were doing well on it.