Taking Note

Last week was the anniversary of Brave Baby's tracheostomy surgery. Not much to celebrate, really. It's not as though we celebrated it, merely noticed it as in, "Wow, we've been living with this a year already." Not much has changed with her in that year, at least not outwardly. Still the trach, still the oxygen, still the g-tube. What pipe dreams I had this time last year-that she'd need the trach no more than a year, the oxygen no more than a few months, the g-tube for six months, tops. Ha!

But things have changed. I have to remind myself of that. We haven't been able to get rid of any of the technology, I guess because the underlying conditions requiring all of that technology turned out to be considerably worse than we'd thought. When Brave Baby was first trached, it was for polyps on her vocal chords, which made it difficult for air to pass through. The ENT doctors assured us that these would likely go away on their own within a year. The really good news, they told us, was that there was no damage to her subglottic region. That's real trouble.

Two weeks later, Brave Baby had her g-tube placed. During the surgery, the ENT did a routine bronchoscopy to find out what was going on with those polyps. And lo and behold, subglottic damage. Major damage. Stage 4 stenosis. Where'd that come from?

I'll never forget the way he gave us the news. Grimly. Like a reaper. "Not many treatments for this," he said. "Major surgery. Only 80% effective." "You're saying she'll have a trach for the rest of her life?" I cried. "Well that's not very common. But this is a lot more serious than we thought. We only have maybe one or two children in our practice with this condition. And we've never seen it happen like this."

Floored. Just absolutely floored. Dad and I were directed to the chapel to do our (my) crying. We sat there, stunned. A couple who'd been in the surgery waiting room when we got our news, who'd witnessed our drama, came in to pray. An odd couple. The woman, short, rotund, with lots of curly light brown hair. The man, even shorter-a little person-stocky and cleanly bald. But kind. They were so kind. They promised to pray for us. Later, we saw them leaving the hospital, both crying. I have seen them since, on subsequent trips. They are regulars, like us.

So stunned were we that we completely overlooked the good-extremely good-news that day. Brave Baby had also had exploratory bowel surgery-yes, it was an incredibly tough day for that baby-because scans had suggested she might have a bowel malrotation. Turned out she didn't. Her small intestines are just slightly more to the left than most people's, but not a problem. So they didn't have to do more extensive surgery to correct the malrotation which, I've since learned, can be extremely serious.

And that is what I often fall into doing, overlooking the good news. I take for granted the things that are going well. But isn't that what the average parent of the typical kid feels entitled to do, to take for granted their child's health, their child's aliveness? Yes, indeed. But I cannot afford to. Every moment, every breath is a blessing. Every complication dodged. Every little piece of progress. Mark it. Remember it.