On the opposite of permanence.
I was trying to come up with a title for this blog post that would hint at its content. I wanted to talk about the opposite of permanence, but it’s not an exact opposite. If I was to write that life is temporary, I imagine the response would be something like, “No shit, Sherlock.” And I’m not talking about mortality even though I’d be a bald-faced liar if I said Maddie’s accident didn’t bring it to the forefront of my mind. Life’s temporary because we all die, sure, but life’s temporary while you’re living it and not only because everything can change in literally a moment’s notice but because it does change.
My days used to be managed by school bells; now they’re managed by other alarms–the pulse oximeter’s beeping; the feeding pump beeping; the ventilator beeping. All these beeps are overwhelming and make it nearly impossible to relax.
I’m having trouble expressing myself. That could be for any number of reasons, but I think it mostly stems from the aftermath of Maddie’s traumatic and tragic accident. I’m selling my house; it’s under contract and we’re scheduled to close May 14th. I moved back in with my parents for about two weeks before traveling to stay with my sister in Florida to help care for Maddie, but now we’re in Harvey, Louisiana–which is just outside of New Orleans–to get Maddie care from a hyperbaric oxygen treatment specialist. I’ve been living out of duffle bags and garbage bags and laundry hampers since March. When the legal forms for the selling of my home needed to be filled out and signed, I had no idea what to put for an address, and that’s the first time that’s ever been an issue for me.
They posted my job online. I knew they would but it really felt weird seeing my replacement begin in real time.
Some days are harder than others, but that’s true with anything, I guess. Lately, the days have been very difficult. Missy’s feeling overwhelmed and I don’t know what to say or what to do. I believe Maddie will get better and I know I get a lump in my throat when I consider the possibility that she won’t. No one is giving up on her, but thinking about what raising a special needs child entails is overwhelming. Missy talked about what she misses, like playing with Maddie and just hanging out with her, and how unfair it was when she imagines all the things she will miss out on if Maddie doesn’t recover.
But no one knows the future. And if Maddie’s shown us anything this far, it’s exactly that. The doctors said she’d never breathe on her own–and she is. Today, when we were changing out her G Tube, she withdrew from pain. She feels things and I KNOW she’s still here.
It’s hard. It’s so hard. Just when I think I have a handle on the situation, I’m listening to my sister sob and wail in the bathroom. Nothing is permanent. Everything is temporary. That’s not a perspective I’ve ever explored before. I’ve always been more of a romantic, insisting that everything happens for a reason and that love is the only, only thing that matters. And I’m struggling to hold onto those ideas. This is the most difficult test of my faith I’ve ever faced.
I have to keep myself in a positive headspace. And to do that, I need to remind myself of a crucial fact: Maddie is getting better. Her tone and reflexes have improved from just two dives. My sister’s looking more and more into stem cells and she’s liking what the research has to say.
We just have to keep breathing and we just have to keep taking it one day at a time.
As for the writing, I haven’t done much outside of this blog post. I try to journal but it seems like everytime I sit down to write, an alarm goes off or we’re crying too hard. Before I came down to Louisiana, I did complete the first round of edits on my manuscript.
But, as Ingrid Michaelson sang, all that I know is I’m breathing.
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