Boring Machines Disturbs Sleep
Happy birthday, Ella.
A year ago today, my youngest arrived from the womb screaming like something from a Clive Barker novel. It’s among the most beautiful things I’ve ever heard. I cried. That scream told me that Ella was strong, resilient, and I knew she’d need to be. Ella’s heart wasn’t healthy, and would require three intensive open-heart surgeries to be repaired. The first was scheduled for two days hence. She came through brilliantly.
It wasn’t until the following week, as Ella lay recovering, her very small body a blossom in a garden of tubes and monitors, that we were told that the surgeries were considered “palliativeâ€, and would not provide full repair. Sometime around 2025—give or take a few years—she would need a heart transplant to continue living.
We were crushed.
We knew Ella’s life was to be challenging: there were the operations, of course; but there were other treatments and not a few limitations with which she would just have to live, to live at all. She would never bear children. She would have to resign herself from a very active lifestyle. She would have to endure growth hormone treatments until puberty, at which point she would take up estrogen treatments in lieu. And there was always the potential for some unforeseen complication or secondary health problem to emerge later in life.
As sobering as is that list, we thought it was the better alternative to waiting on a list for infant heart transplants. Had we known that we were merely delaying the transplantation…I don’t know. I won’t ever know. But we had steeled ourselves with the success of the first operation, and Ella’s obvious strength—she was renowned in whatever ward she lived in for her stubbornness, her relative physical strength, and her nurses were always the envy—for all we’d known to expect. We didn’t expect that a transplant was imminent in every case.
We were crushed, but we got over it. Whatever the reasons, whatever might have been the right decision—if such a phantom ever existed—we pressed on. We spent so many days of the fall of 2005 in one hospital room or another, becoming quite familiar with the sterile sleeping arrangements and cafeteria offerings. We learned about the oxygen tanks. We learned—Danielle long before me—to insert the nasogastric tube, navigating Ella’s nostril and flailing fists and hoarse crying and eventually sinking the weighted tip of it into her stomach. Though she eventually ate more and more by bottle, Ella never quite outgrew the tube, and there are few pictures or memories that don’t include it.
Which is fine. If we had had to chant limericks or eat scrota or do handstands to keep her alive, we’d have done them all. Those necessities of her particular conditions became part of the tapestry of her life, weaving between the kisses and vomit and diapers and pacifiers and those few golden smiles she so stingily gave out. We loved to see her take the NG tube out, for example. That was Ella’s way to let us know that she wouldn’t settle or give up, and that she hated that fucking thing (I’ll presume those to be her sentiments, though she might’ve chosen different words) so much she was going to get better if only to spite it. Spite that fucking thing.
Ella’s second surgery was scheduled for November of 2005. As strong as she was, as impatient as she was to heal and grow and spite that fucking thing, it just wasn’t enough. On the afternoon of Friday, October 7th, 2005, at about 1:45 p.m. (as near as we can figure), Ella died. As quickly as we could, those of us closest to her assembled at the hospital and spent a few hours rocking her and kissing her and marveling at her. We buried her on the 12th.
In these nine months since, I have tried to keep as much of Ella as I can. We have her pictures and a few invaluable minutes of video. We have blankets and clothes and a few pieces of the apparati we used to help her live. It’s not enough, but there’s no use raging against that. She was never just the blankets and clothes and pictures and video and apparati, and never will be; but they were her shadows, and regarding her shadows is the closest thing we have to keeping a loving eye on her.
I smile. I smile and feel guilty about it, but I smile. I feel guilty because I’m supposed to be sad when I see her pictures, right? Sad for the loss, overwhelmed, in perpetuity? Well, I don’t know if it’s just me, or how people normally do it, but I smile. I see her pictures and she’s beautiful and I’m overwhelmed by an urge to reach out and hold her, or put the socks back on her hands so she doesn’t scratch her face, or fix her oxygen canula. Of course I miss being actually able to; but I take what I can get, and what I can get, what’s still with me, is more than I’d have had if Ella had never been. I’d lose more of her if I wasted time worrying and stomping and shaking my fists at the world. I can’t afford to lose any more of her. That isn’t to say there isn’t pain that rises like smelted impurity, hot and broken. But remembering her as much as I can is better than grieving.
So happy birthday little girl. I miss you.
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