Watching the Sky

(If short on time, scroll to the end.)

As the sun began to set last night, Emma asked me to pull the curtains back, so she could see the sky. This, and the early morning light, are the only times of day when she can look at the sky with her own eyes. No dark sunglasses needed. She sleeps a lot, though, so this is the first time she's seen the sky for a while.

This hospital room has a strange set of curtains. In the center of the two long panels, there is a very short portion, creating a permanent opening, which, during the daytime, allows the sunlight to pour into the room and overwhelm Emma's eyes.

My solution has been to grab medical tape, tape the sides of the curtains to the wall, and use one of my large hair clips to pinch the two long panels together, closing that middle open space, which suddenly casts the room into darker grey, muting the colors around us as a result, and providing Emma with immediate relief. It makes us feel like we're sitting in a cave.

When the evening came, and she asked me to open the windows, I taped the curtain panel back far enough to put the sky on permanent display for her (this is what medical tape is for, right?). The evening was quiet and the sky was beautiful. She sat and watched the sky, and I watched her. If eyes could drink, hers were drinking.

In a soft voice, she eventually said, "I really miss seeing the sky. I used to love going outside." I could hear the longing in her voice, the reminiscing about a life before her eyes were like this. But one where she was struggling to live in a different way. It was a trade, though, like we've discovered all of this seems to be. Kind of like the law of equivalent exchange. You can live, but you have to give something in return, and she's given so much.

The night continued on. Tomato soup is her current favorite. It's a simple enough of a meal, but it's still a small amount and never satisfies the hunger. She looked at her food and quietly said, "I really miss eating."

As we prepared for bed, I took her contacts out (she can do a lot with her thumbless hands, but this isn't one of them). Not only are they prescription to help improve her sight, but they also help protect her eyes from her eyelids. Then, I handed her the restasis eye drops. They help to stop the attack from her new immune system on her eyes.

Her left hand pulled back her eyelid, while her right hand tried to put the drops in. Only, as she neared her eyes, her arm started to shake violently. She stopped, gave it a second, and then tried again. It didn't matter, though, she didn't have control over it right then.

I watched her struggle, wanting to do it for her while knowing I needed to give her the space to try it herself. I watched the emotions flash across her face until, in her tiny voice, she quietly said,"Hey, Mom, can you do it? My arm won't let me right now." She smiled a little, but I could see the sadness of having a body that often didn't obey her very well anymore.

Night came, and we slept. She always listens to Enya on a speaker placed near her head, so she can hear it without her hearing aids. It helps to keep the nightmares away.

When we got up this morning, she wanted to shower. So, I helped her, dressed her, and blow dried her hair. She stopped in front of the mirror, grabbed the brush, and brushed her hair. Only the memory of her waist-long locks, that she had grown out in defiance of whatever it was that caused her to lose her hair twice already, looked back at us. The reality of her reflection showed her that, ultimately, it had say over whether or not she got to have hair, as witnessed by the slow hair loss for the third time. She brushed with quick, short strokes, the ends of her hair coming so much faster than they used to, faster than they were supposed to. She glanced, quickly, seeing the regrowth, then sat the brush down and shakily walked away.

Why am I sharing this? I don't know. Because it hurts, and I don't know how to say it. I don't know how to put this into words yet. I'm also too tired to know if this even makes sense to others. But these are some of the things that cause me to run off to the privacy of another room, close the door, and cry for a minute before opening it back up and walking back out.

I would do anything to trade places with her, but I can't. Instead, I try to appreciate the things she knows we should all appreciate.

UPDATE

We've been in the hospital since Sunday night. It's Thursday night now. Hem/onc, GI, and the dietician are over her care. Also, it turns out it was GI that was the one guiding hem/onc to discharge Emma (when we went to the emergency department) because they wanted her to see them as an outpatient instead.

Hem/onc has been quite concerned by things, keeping her here until we can get more food in her. GI has been a little slower to listen and understand. They came in with the belief that she was just refusing to eat, due to having constipation issues for a while, but now we seem to be on the same page after a few different "debates" over things.

They've added Mestinon as a new drug to help her intestines work better. (If any of you are familiar with it, please share your experiences. Good or bad.) They've also doubled each dose of lactulose. They said she had a typical amount of stool, but I've since seen the x-ray, and I've also seen multiple fillings of the toilet hat to the top, and am of a different belief.

Thankfully the GI doctor no longer believes she is simply refusing to eat and thinks she has something wrong with her intestines. Like, he isn't convinced the lack of feeds/eating is due to the constipation issues. Next week she'll be admitted (assuming we're discharged before then, which hopefully we will be tomorrow or the next day) for a three day study, where they will check evvvverything in there. From esophogus to the other end and everything in between.

They've also switched her to a new formula. The one that Cincinnati said works best for FA kids. She has been doing better with that formula, but she's at a really slow rate still (20ml), so it's really to early to tell. Fingers crossed it works better.

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