Some Days begin at 4:00 a.m.

I woke up to the sound of coughing at the other end of the house.  It was a wet, productive cough that I recognized immediately.  Savannah's cerebral palsy prevents her from dealing with mucus the way most people do.  She can't blow her nose, or swallow, or hock up a chunk of phlegm and spit it out.  What she can do, without the aid of suction, is cough.  Sometimes she coughs with enough force that a glob of snot shoots out onto a waiting cloth.  Usually it only comes up into her mouth.  If one of us is around, we'll fish it out before she swallows it again.  Often she can't swallow it because of her poor muscle control.  The pearl mucus rolls back into her throat where it sets off her gag reflex.  She retches.  If she has a full stomach, she vomits.  I listened in the dark for these sounds.

I looked over at the clock.  Almost 4:00 a.m.  I had a splitting headache... so very tired.  The evening had been a rare one, in which my brother and parents had come over.  It had been more than a year since we'd all been together.  We  had sat around the table, eating extraordinarily good, sweet potato tacos Tamara had made.  I kept everyone's glasses full of frozen margaritas.  We rolled Savannah up to the table.  She sat at the opposite end from me, smiling at all these voices going around as we told outrageous stories or when we made fun of each other.  After dinner, I pulled out a stack of my father's LPs and I let him pick what we'd listen to.  Ruby, the perpetual ham, did the most perplexing, yet comical interpretive dances.

So, at 4:00 a.m. when I heard the coughing, I hoped that was all that it was.  I didn't want to crawl out of bed.  I wanted to sleep away my hangover instead.  But when you have a child with disabilities, you don't get the luxury of being sick, or having hangovers, or getting a full night's sleep.  It is like having an infant forever.

The cough turned into a retch, followed by a gag, followed by the unmistakable sound of vomit.

I groaned and slid to the floor, not fully awake, I walked zombie-like to her room.  The smell of stomach acid hit me a the door.  I flicked on the light.

"Hey, Savannah.  Daddy's here.  I'll clean you up."  I donned gloves and pulled out the things I would need.  She gasped for breath as she cleared more gunk.  "It's okay," I soothed, "get it all out and you'll feel better." I won't go into the details, but I changed out what needed changing, wiped down what needed wiping, cleaned her hair, and about thirty minutes later, kissed her and told her to go back to sleep.  She gave a horsey giggle.  Now that she was dry, she wanted to party.

"I'm going to try to get some more sleep,"  I said, "and you should, too.  See you later."  I stumbled to my room and fell into bed with a thump.  I glanced at the clock.  Savannah's morning feeding and medication time were not that far away.

Later in the morning, over coffee on the front patio, Tamara asked why I didn't get her up to help.  "You know you can always get me if you need me," she said.

"I know, but I could handle it.  I figured at least one of us should get some sleep."


  1. I hear you.

    Permanent sleep deprivation feels like jet lag, except without all the excitement of actually going anywhere.

  2. I like your description of life as a caretaker. I had "permanent jet lag" for about a decade. It taught me how to sleep just about anywhere for just about any length of time. For a very long time, napping was my only method of sleep... and I wonder how I survived.

    Thanks for the post.


Post a Comment

Popular Posts