Some days start at 2:00 a.m.

I am awakened by Savannah wailing in her room at 2:00 a.m. She doesn't speak a word-- never has and never will-- but I know her grunts and moans and the tonal qualities that differentiate her various cries.  This one, the cry that rouses me from sleep, is the kind that she uses to beckon me like a banshee from the moors.  This cry does not disturb Tamara, who often slumbers on, because Savannah has tuned it for my ears.  I was her night nurse for many years, and even though that designation is no longer relevant, she still calls for me.  When she wakes scared and alone, she wants her Daddy.

I roll over and tell myself she doesn't really need me.  She's a big girl now.  How old is she?  Fourteen.  She's fine.  The sound dissipates.  I strain my ears.  Nothing.  Good.  False alarm.  I can go back to sleep.  The wailing returns.  Crap.  I drag myself out of bed to investigate. Tamara mumbles through her eyelids, “Let me know if you need me.”  What she means is:  "If what you find is so bad it will take two people to deal with, just come get me."

I stumble through the dark house to Savannah's room.  I plug in the Christmas lights that ring her window so I can see.  She is photo-phobic, so I'll only turn on the room light if I absolutely have to. She breaks from her cry to search for me.  She is legally blind, and struggles to control her eyes.  They dart and shift.  "I'm here, Sweetie," I say, "What's the matter?"

She cries again, but this time, it isn't the beckon-cry, it is the one that says, "What took you so long?"  She jerks her arms forward, stiff with anger. She has slid down the bed, which in inclined to help her with reflux.  She's been wiggling with agitation and the sheets are clumped and the stuffed animals we use to position her have become dislodged. I stroke her cheek and brush the sweaty hair out of her eyes.

"What's going on?" I ask.  I run through my mental check list:  I feel around her face for vomit. Finding none, I inspect her diaper. Clean. She coughs a wet cough, which she has had for a few days. I figure the cough or a seizure has woken her up and she can’t get back to sleep. I ask, "Did you wake up with a cough?  I'll get some medicine.  I'll be right back."

The night nurse had called in sick again. She’s called in sick the last two Mondays. She only works three days a week normally, but has even reduced that with cancelling of late. She called me at work, crying again. Through her sobs she told me about her own doctor’s appointment and that the tests had come back negative. I listened patiently. When I got off the phone, I told the person in my office, “Nurses are supposed to support us, not the other way around.”  I'd worked with enough nurses to know that this particular one was at the end of her life cycle.  Often, right before they leave, they begin calling in sick.  They've lost interest in our "case."  This nurse had started complaining about the nights.  "I was up with Savannah again last night.  Did you hear us?" she would say.  "So, I'm really tired today.  I'm going home and right to bed."  How do I respond?  I want to say, "Must be nice.  When I'm up with her all night, I have to get up the next day and go to work."

I burp Savannah's gastric button. The gas that spews out is not enough to account for her agitation. I inject her stomach button with some Ibuprofen and cough syrup. She continues to wail. I roll her on her other side and massage her legs. I've got her balanced on her “bad” side, the side on which she never lies because of her scoliosis. She totters and wobbles on the convexity of her hip. Each time she does so, she has a small startle that is indicative of her seizure disorder. She wretches loudly, and up comes a nasty clump of phlegm covered in cough syrup. It makes a magenta splat on the floor as I skip out of the line of fire.

I talk to her and soothe her.  I am too tired to sing.  I still have her on the other side, leaning up against me so she doesn't fall out of bed. She smiles. We hold steady for a while in this position until I’m sure she’s calmed down. My back is strained and hurts.  Periodically she jerks. I look at the Christmas lights.  They glow violet in this darkness that we share.  They are strangely beautiful and I understand why she likes them so much.

I roll her back to the middle of the bed. I lift and re-position her body. I wedge a large stuffed hound dog behind her back.  I walk to the other side of the bed and place an enormous stuffed rabbit, almost as tall as her, into her arms to cuddle.  I push the rabbit's feet between her knees to support them. "Go back to sleep," I tell her.  My voice is gravel.  "It's sleepy time." I kiss her forehead and stroke her silky brown hair.  "I'll see you in the morning.  I'm going back to my bed and go to sleep.  I suggest you do the same.  Okay?"  She stares past me at the Christmas lights.  They reflect in her eyes.  What a beautiful child, I think.  What a damn shame.

I tell her good night and that I'm turning off the lights. I unplug the glowing violets.  I cross the dark house to my bed. I am tired.  My muscles ache through to the bones as I try to relax. Tamara stirs, "You were up a long time.  Is everything okay?"

"She just needed comforting.  Everything's fine,"  I say. 

Though I am exhausted, I can't get back to sleep.  I lie there listening to the night:  squirrels across the roof, an occasional speeding motorcycle in the distance,  the hum of the ceiling fan.  How many years have I done this?  How many more lie ahead?  Will my life ever be normal?  Would I have it any other way?  What decisions, what twists of fate have led me to this moment?  And where do I go from here?

These are the things I think about when I am alone in the darkness.  I wonder what Savannah thinks when she lies awake in her bed.  Maybe she marvels at the cruelty of fate.  Maybe she asks "why me?"  Why did this terrible thing happen?  Maybe our thoughts, hers and mine, aren't so different?

Or maybe she has managed to transcend it all, and she is grateful that she has a family that loves her and that she can love in return.  Maybe that is what I should do, too.  "Everything's fine." I say to myself.

Tomorrow I'll go to work and pretend to be normal.  Someone will ask, "How's it going?' and I'll say, "Everything's fine," and they have no idea what I'm really talking about.


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