The surgery and the critical time in the hospital were extreme, but in some ways that helped make them easier to get through. The focus was single-minded: comfort Willem; be with Willem; restrain Willem when necessary.
I hardly slept for three nights; if the nurses weren't coming in to administer meds or check his vitals, then Willem's fitful sleep was disturbed by nightmares. "Mom!" he would call out in a new, distinct way, with an urgency I'd never heard before. And I'd pop out of bed and put my hand on his forehead and soothe him back into his uneasy sleep. That's what I was there for.
Now we're home, and the same level of vigilance is not required. And I no longer have the "We WILL get through this" mentality to energize me.
We DID get through it. And I am SO thankful for that. But Willem still calls "Mom!" in his sleep in that new tone of voice. And he has been as vigorously disobedient as the doctors warned he might be. Nels, the most sensitive little boy you're ever likely to meet, has been alternating between losing his temper and falling to pieces by wailing in a heap on the floor every time we tell him something he doesn't want to hear.
All of these things are a little more difficult to handle gracefully once one falls even farther behind on sleep and is no longer in emergency mode.
Today I took Willem to the pediatrician for a follow-up appointment. (He'll see the cardiologist next week.) He did great until it was time to take out the one remaining stitch from where his chest drainage tube was. It took 3 adults to hold him down, and all that hospital sympathy I had for him came flooding back.
If only that sympathy would last. It's easy to rise to the occasion when the stakes are high. The day-in, day-out love is harder. I struggle to remain kind when Willem spends a good part of his day intentionally pushing all of my buttons.
We're all just a little beat and out of sorts as we absorb what's happened in the past week. A little rest, a little "normal" life, and I'm guessing we'll be much better.
And what a luxury that is. Our health issue was only an isolated incident this time. I can't imagine what it's like for families with a member who needs ongoing hospital care, and must figure out a long-term way to synthesize the "crisis" and "everyday" modes. It's draining. Thanks to our experience, I'll be paying a lot more attention these days to how I can support people in that situation.