Today when the medicine finally hit Cyrus, his eyes rolled back, his head bobbed, and he started jerking a little bit. The shock of seeing it startled Mindy so that she jumped. I, too, gasped. And we stood watching until he looked peaceful. Then we were led back to the surgery recovery area where we picked up our phones and started in with the distraction.
The procedure takes just 10-15 minutes. It's a tube down the esophagus with a balloon that stretches it. The end.
The doctor came through the hospital curtain after just 5 minutes saying, "Everything is fine. He's fine." I asked why he was there, then, with his resident in tow. "Because," he said, "I can't do it." I told the doctor to stand up, turn around, walk out, and try it all again.
He explained to us that it's far worse than anyone thought or could really see in the upper GI study they did last Friday. You see, the constriction in his esophagus was thought to be, well, vertical, but it turns out that it's kind of sideways. So, it's impossible to shove the thing where it needs to be to dilate it. He told us they found a bean resting on top of nearly shut area. We know he hasn't eaten anything since Saturday morning.
Maybe by now you've figured out the bad news. This problem is not a simple fix. Cyrus has another appointment scheduled for March 2. Then, of course, surgery. A surgery that requires cutting into the flesh and pulling it apart. He already has one scar like that on his stomach-from when they did the surgery to constrict his esophagus when he was just a few months old. The scar that was so long when Cyrus was a baby is now faint and much smaller. But. Here comes another one.
Cyrus was wheeled back to us in the room. We waited for him to wake-up, and he went home with Mindy since it's still her day with him.
I used to write about a time when there would be nothing "wrong" with him. At times, that dream seems just that: a dream. I've gotten used to so many things that most of you have never and will never deal with. My kid eats through a tube. My kid is diagnosed with "multiple disabilities," and goes to a few special classes at school. My kid has never known his stomach not to have a scar or a plastic button sticking out from it. My kid knows what the hospital gowns look like; when he sees them, he cries and refuses to put them on. Like always, I get comfortable with things, then they change. Then something big happens. That's how it's been since he was born.
In order to send Cyrus back to school, the school nurse has to give him Pediasure in his tube around lunch time. Otherwise, he'll go hungry. She can't do that without a doctor's note. Hell, she can't even give water to him without a doctor's note.
The surgery he needs will keep him out of school at least a week, maybe more. And the amount of time he'll need to heal his wounds, well, that could be a lifetime.
Of course, I'm grateful that this beautiful child is mine. I'm grateful for all the amazing things he can do that doctors said he might not. But I still look forward to the day when all of his problems are gone. When I allow myself to finally relax. It's unnerving to wonder when he'll eat, when the tube can come out, when he'll run correctly, if he'll have another seizure. I want those dates and times so I can count down. X them off my fucking calendar. It's what I've craved his whole life. I know that's impossible, so I've learned to cope.
It's any number of cliches:
I'm on a ship in a rough, dark sea. I've taught myself to find joy in the space between near-capsizing waves.
It's a war and I've taught myself to get drunk at camp in between battles.
It's rugby and I have to breathe all I can when the whistle blows and fight like hell when it tweets again.
It's not letting myself live in the horrible anxiety of wondering what's next.
C. This is a devastating post. Beautiful and devastating. I hope you will write and publish an essay about it. I feel somehow that it would be a gift to Cyrus. When he grows, he will read it and see how much you loved him from the very beginning.
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