Three weeks ago, Charlie had surgery to (install? No, not the right word) place a Gastronomy tube (from here on out, the button). It was not a decision we took lightly but in hindsight, it’s one we should have made much, much sooner. It’s only been a few weeks, but already, this is a very different life we’re living. Mostly because we’re actually living. I’ve gotten out of the house more in the last weeks than I had in all the months prior. I no longer feel trapped. And I no longer feel guilty. The NG tube changed Charlie – it made him anxious and unhappy. It made us feel terrible, but we didn’t know what else to do, and with all the voices in the medical and therapeutic community assuring us he’d just *get* eating one day, we felt hasty and selfish moving to a more permanent solution. He hated that thing. I hated that thing. It was an anchor that kept me tied to the house, to my baby (whom I love most ardently) and to feelings of frustration and exhaustion.
Surgery wasn’t easy (here’s an “directly after” picture, for those who won’t be put off by a bit of ick). The few days following, just a cough or a sneeze could shock his little body with pain and that was very hard to watch, to know I’d caused, or at the very least, allowed it. I wondered if we’d been selfish. I did not wonder that for long. His recovery and return to happy, relaxed, easy going Charlie was quick and life changing.
We leave the house to take adventures. I have taken on a freelance gig – a small but crucial step toward normalcy for me. I’ve found reasons to put on mascara and use the blow dryer. Yes, he eats through a hole in his belly. That’s not exactly normal. But it works. So well. And as an added bonus, I get to see my son’s face, without all the tubes and tape. And god, it is such a beautiful face.