Six years and about a billion miles

As I’ve written about before, I have a very real strong tie to locations in my memory. Even as a child, nothing would trigger nostalgia like a place.

While I didn’t share it here, I’ve spent most of the year in and out doctor’s offices after a period of spending several nights a week throwing up and losing a bunch of weight. I’ve embarked on a gluten-free and diary-free diet, which has helped greatly, slowly clearing up all of my symptoms.

Of course, before arriving at this answer, I underwent a handful of diagnostic tests at a hospital about 15 minutes from our house. It’s the hospital where both of our sons were born, and where we went after losing a pregnancy in the fall of 2013. I remembered and thought about those events while parking, but as I was being walked down the hallway, the nurse and I passed the ultrasound suite where Josiah’s tumor was first discovered:

The day before, a routine checkup had ended in a conversation of “drive to the hospital. Don’t stop to go home, don’t stop for lunch. There will be doctors waiting for you in the ER.” Needless to say, we were shaken, but not until an MRI and that conversation on that creaky plastic couch at Lebonheur Children’s Hospital did we know the full extent of just how bad things were.

That checkup was six years ago today.

Before we drove across town to the ER, I had a few minutes to step into the lobby and get in touch some people. I called our parents and siblings, whom met us at Lebonheur. I texted my boss something vague, but that day would be the last day I worked for a month.

While May 8 will always be burned into my family’s collective DNA, Josiah’s disease doesn’t rule our lives day to day, like it once did. It’s been four years since Josiah stopped chemo, and just last week, had an MRI that shows his brain tumor remains stable. It’s still there — he’ll never be “in remission” — but it hasn’t grown. He’s finishing up kindergarten and, for the most part, is a normal six year old.

None of that seemed possible while sitting in that little room.

The years have been hard, and the mileage has been harder, but we’re intact. I never thought we’d get this far. The truth is that Josiah lives on the edge of what his doctors know about his disease. Any day, any MRI, any seizure could throw us back into the trenches. Living with that weight is hard, but we’re learning how to manage it.

I don’t know how many more miles are on this road. I don’t know this story ends, but for now, I’m trying to treasure every moment I can with Josiah and his siblings.