Last winter, we were planning to have L’s leaky g-tube site surgically closed — a “gastrocutaneous fistula closure,” to be exact. I was busy reflecting on how fitting it would be that this surgery was called a closure, as it would be the first that officially marked an unqualified ending for us — even knowing full well that there may be more to face ahead — when we were derailed by increased symptoms and some imaging that made us pause.
Now, in June, we’re back again for Closure Attempt 2.0.
It’s a terrible time for a surgery, to be honest. We’re busy packing up our entire house, my last day at my job is Thursday, and in six days we’re moving 816 miles away.
At the same time, that’s exactly why we’re having a surgery right now. It should be a simple 45-minute procedure, but when you’ve had so many major abdominal surgeries, scar tissue and adhesions can complicate even the simplest thing. We want to make sure L’s surgeon here, who knows his belly better than anyone, is the one to bring this chapter to a close.
And it is closure in so many ways…. We never intended to stay in St. Louis, Z and I. We’ve had our sights set on the mountains for ages. But when L was born, our world was so entirely wrapped up in his survival that everything else fell away.
Priorities change, when you have a child with complex illness. Options are taken away from you. I changed my career path (for the better, I might add); we delayed having a second child far longer than I ever thought I would; and moving elsewhere left the conversation entirely, because we couldn’t risk leaving a medical team we knew and trusted.
That same medical team that has kept us in St. Louis is now the only reason we’re able to leave. They saw L — and me — through his darkest times; they’ve been with us through every major setback and every major milestone in his recovery, and it is thanks to them that we have made more progress than we used to dare to hope possible. They have given us the gift of being able to leave them.
This small surgery marks a big ending, and we are forever indebted to the incredible people who made it possible.