This post would probably have an entirely different tone if it were written several months ago, when everything felt SO out of control. But lately, it feels like we're settling into a life that vaguely resembles normalcy, albeit our own heterotaxy-flavored version of normal.
The first 18 months or so of Jojo's life were a complete blur... we were all so sleep-deprived and totally stressed out, and we were in and out of the hospital so often that we were never fully able to adjust to either hospital or home life before it was time to switch settings again.
And then, after Jojo's most recent heart catherization in November 2016, we got a bit of a break from procedures and appointments. This gave us a chance to (partially) catch our breath and start to crawl our way out of survival mode.
We've hit a few bumps along the way since then, but it feels like over the past 6 months or so, we've been on a slow but overall upward trajectory towards a more peaceful and enjoyable existence.
That being said, I wouldn't necessarily say our life is typical in a conventional sense.
Consider the scene below:
I took this right before stealthily exiting Jojo's room at 10:14pm, after spending about 90 minutes in there for his nightly routine: giving meds, setting up his overnight G-tube feeds, reading book after book, and then I lie next to him for however long it takes him to fall asleep, since he becomes inconsolable if I leave before then.
Jojo more or less sleeps through the night now, once he finally falls asleep, but there's always something going on with him at night... whether it's the feeding pump clogging and the alarm beeping, or a random vomiting episode, or night terrors, there's always something...
So, one of us (99% of the time, Eric) will go in there later when we're ready for bed ourselves and sleep next to him overnight, on the queen-sized mattress on his floor. It's kind of a funky arrangement, but we figured out we all get the most sleep that way, so it's what works for now.
That's just one of many examples I could think of to illustrate our abnormally normal new life. It's exhausting and chaotic, and I don't know if that will ever change completely, but it's also incredibly fulfilling.
...because despite what we may have lost, in exchange we've gained some perspective on what really matters. I've never felt more present and grounded, and that feels really good.
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