Baseline
For all of us, there’s a baseline, our normal state of being. Not a particularly good day or a particularly bad one when it comes to health… just an average day. But what does “baseline” look like for a child whose neurological condition can switch on and off like a light?
When we went to the hospital with Archie the first handful of times, we constantly got asked if he was back at “his baseline?” We had no clue. It was something we had never thought about before. Seeing your child hooked up to numerous machines, dazed from rescue medications, and trying to calm the million thoughts in our head, it is near impossible to see this as anything close to baseline.
Figuring out Archie’s baseline has been one of the greatest challenges. To the outside world, he may look like a typical one-year-old. Maybe a little wobblier when standing, but still seemingly “normal.” At the same time, one side of his body could be paralyzed, unnoticed because he hasn’t needed to use that hand. Is he uncomfortable? We don’t always know, because he isn’t able to communicate that yet.
If you’ve spent more than a day or two with Archie, you know that he experiences bouts of dystonia-like episodes nearly every day. Is his crying a response to these episodes, or simply the cry of a child wanting attention? That constant assessment, that constant judgment call, we do it all day, every day. It’s exhausting, but it has also become second nature.
This new reality has spilled into every corner of our lives. Traveling home to Ocean City now requires monitoring equipment, contingency plans for the closest hospital, and the acceptance that we may not see everyone we hoped to visit if Archie is having an episode day. And as much as he longs for the beach, the risk means we can’t let him enjoy those hot summer days the way he deserves.
The hardest truth is that with every passing day, every episode, every setback, we seem to drift further from Archie’s baseline. One day he begins to say “Da,” and the next day that word disappears. One week he firmly grasps objects, the next his hands lack the strength. We search for the right SMOs to help strengthen his legs, holding onto hope that one day he might walk.
And yet our lives aren’t defined only by loss. Watching Hudson wrestle Archie while they both cackle reminds us that joy still bursts through the cracks. Seeing Archie crawl after our dog’s tail shows us that his curiosity is alive and his brain is still reaching outward.
Our world will never return to what it once was. Archie’s baseline has changed, and with it, so has ours. But in that change, we’ve learned to embrace new definitions of normal, to celebrate the small victories, and to find light where we didn’t expect it. The Zimmer household may never return to the baseline we envisioned, but each new baseline holds a lot of hope.