This weekend we wound up spending some time in the hospital due to an infection we have been stuggling to manage at home. While sitting in the emergency room on Friday Ez was having a few moments of not wanting me to interact with her and we were just waiting on transport to a test, so I thought I would take advantage of the quiet to start a blog post.
I wrote the following:
It occurred to me today that to the best of my knowledge I have never written a post from the ER. So, while waiting with Ezzy to get worked up, I thought that I might just go ahead and start a post while Ezzy plays quietly next to me.
I have a song stuck in my head. It is one of those songs that make me feel as though I uncovered some precious little secret: “Kiss me like the world is gonna disappear.”
And that was as far as I got because, as most everyone who isn’t me would realize, writing in the ER is a terrible idea. I quickly decended down the rabbit hole that is trying to translate the careful and subtle balance of Esmé’s homecare into a hospital setting…which is, by its nature, not very well suited to the flexible, individualized, and sometimes downright odd care that keeps Esmé making such good progress.
Anyway, here we are a couple days later and I cannot for the life of me remember where I was heading with this post except that the lyric above is from a Mary Lambert song, So Far Away, and that I was supposed to be seeing her sing at a private lunch performance on Friday right about as I was sitting in the ER writing the post.
I think it is also fair to say that I was feeling pretty disappointed about that…about missing the performance (which I had won, surprisingly, the day previous), about being in the ER at all, about what mysteries Esmé’s illnesses always are, and about the larger picture that life just seems to remain so unpredictable for us.
Perhaps I was going to talk about feeling like our lives are so in the moment… Maybe I was going to talk about how excited I get about little bits of language that just cut through everything, that tell a perfect story. Perhaps I was going to whine about the fact that I missed the chance to hear that song sung in person…to watch those words come to life in front of me.
As much as I’d like you, reader, to think I had a solid plan though, the likeliest explanation is that I had not a clue where I was heading and those words would have been reworked and moved around, eventually turned into something different…or nothing at all.
But, instead, tonight as I turned back to writing and saw those abandoned lines I was reminded of the trade-offs that we make, the little false starts that never become…the things on pause, perhaps indefinitely. Having Esmé need another unplanned hospital admission courtesy of her uncooperative kidneys was again a reminder of how much our lives are not our own…how everything has to screech to a halt for Esmé.
This is how we keep her safe. And that is, of course, more important than anything.
Having Esmé in the hospital is always far, far more difficult than having her home. Obviously it is difficult to have her be sick in general (certainly for her!), but there are so many other things to think about at the hospital. We are terrified of exposure to germs. She gets totally out of wack and seems to get worse and worse the longer we stay. Any explanation of her condition and why we’ve come in is rarely much less than a thirty minute monologue–repeated over and over to each new nurse, resident, attending doctor, and medical student. And systems that function pretty well for coming in for an acute illness just don’t work for us…so we have to be totally on…triple checking every dose of medication, repeating important information (and there is a lot with her), and reminding everyone of simple differences like, for example, that her body temperature is naturally over a degree lower than most people or that disturbing her sleep can cause seizures (as it did twice this stay).
In the hospital we administer all of her medications. One of us sleeps in her crib with her. We are almost always two by her side–one to interact with the medical staff, the other to keep Esmé calm. And she is never, ever, under any circumstances, alone. Not even for a moment. We have to advocate for little things and big things that make her more comfortable and safer…some of these things, no doubt, sound like voodoo to the doctors (I can see it on their faces), but they work for her…so we have to insist.
When Esmé is unwell in the hospital there is no room for anything else…
Everything stops…it has to.
The world disappears.
Your diligence I'm sure has saved her life. It's tough to be "on" 24/7, but it is what we do. Hope she is on the mend!