The Last Nap for a Sleepless Child
by Terri Hart-Ellis

Though she falls asleep with relative ease, remaining in repose has been a challenge for my kindergartner since infanthood.  Along with her diagnosis of Rubinstein-Taybi Syndrome came obstructive sleep apnea and a variety of parasomnias.  Despite having had her tonsils and adenoids removed, thus minimizing the obstruction, her repetitive motions and frequent awakenings have not subsided in the years since surgery.

Not surprisingly, we hear reports of her falling hopelessly asleep during less active or engaging times at school.  For example, one day she piled on her outdoor gear in the coat room and came back to wait for dismissal in the classroom on the rug with her friends.  Alas, she passed out on her proprietary purple carpet square and did not budge when the aide lifted her after the rest of the kids had gone.

She stayed asleep in her aide's arms while I ran her backpack and communication device to the car and moved the car closer to prepare for the carrying of nearly 40lbs of snoring dead weight over snow-covered ice.  She continued to saw logs of notable diameter until I put her in her car seat.  Managing her big junior kindergartner size, along with the layer of ice that has covered our suburb for a week, I had to sort of toss her into her seat to ensure her legs did not tangle with mine.  I also didn't want to take too much weight into my back and topple. That woke her up.  She was absolutely thrilled to be in her K4 room one minute and in her own spot in the car the next--like magic.

We followed our after school routine:  she played in the backyard for a bit (read:  ate all the snow she possibly could) while I made her lunch.  She came in, ate, and then watched Jack's Big Music Show to wind down before going to sleep.  

Through lunch, I debated whether to just skip her nap, but my fear was the involuntary pass out around dinnertime, and how that might have a ripple effect at night.  The girl needs sleep to function and she's just not getting it.  So I decided to give it a whirl.  If nothing else, I could get a few things done.

Addie now sleeps in a toddler bed with a removable rail on one side, the wall on the other.  She has taken the liberty of removing the rail herself a few times (I found her downstairs at 3am one night!), but we have since rigged different ways of preventing that.  Still, she'll sit crosswise on her bed, a specific blanket wrapped over her head and shoulders, and rock with her back against the rail.  Upon impact the rail gives a bit with a thud and then audibly snaps back once she's on the forward part of the rock.  There is no mistaking the sound or her particular rapid fire.  She is neither fully asleep nor fully awake when she does this.

Often, I go up, remove the blanket, lay her back down and cover her up; "reset" her if you will.  This usually makes no difference at all, as leaving her to continue rarely leads to saturation with it--she could go for hours.  We have tried the gamut of strategies, to no avail.  Our interruptions never affect her patience or concentration as she returns to rocking after each reset.

After laying down, we sang/signed our song together this afternoon before I pulled her door nearly closed.  Downstairs I busied myself with details that are tricky to focus on when she is near.  My plan was to give her 45 minutes up there and hope she'd fall asleep within enough time to nab some productive zzzs before I had to wake her to go get her sister from school.  

Within six minutes of kissing her cheek and descending the stairs, it started.

This sound of her rocking is a very familiar, very frustrating sound to us all at night.  It initiates irritation and worry at once.  It tells us that she is not sleeping and neither will we.  It drives us to forecast the 24 hour implications: will Addie make it through the day, will she nap tomorrow, will she be able to participate at school, will this undercut her immune system and her awareness, will it effect her already compromised motor planning, sensory processing and balance.  Then, will anybody else get enough sleep, will I?  Will my nerves be shot to the point of childlike crankiness?  Can I do this all again tomorrow?

In short, it is not a happy sound.

Today, I heard it a different way.  Perhaps the daylight leant perspective.

THUMP-thump. THUMP-thump. THUMP-thump. THUMP-thump.

I did not sigh with exasperation, as is my reflex.  Instead, I was abruptly sent back to two separate moments in time, one before Addie was born and one after.  Different days that centered on the same rhythm I was hearing from upstairs.  Daydreams, hope and promise culminated in the moments anticipating this cadence back then.  Despair and cold, bitter loss followed the silence that filled the gap where this rhythm was supposed to be.  These slippery pits of silence took place in my ob-gyn's office.  I remember looking up to the doctor's honed and professional look of sympathy as the fruitless stethoscope dangled, an expression that also asked a question:  is that enough for you, or do I need to put official words to what you probably already know.  This baby did not make it.  There is nothing for you to hear.

Holding a wet, soapy dish in my hand today as I listened, I let this brief brush with heartache move out of the way quickly.  Those recalled life or death moments were just utilitarian this time.  They had to be called up to lend context to the message I was meant to get.  For a girl who cannot speak, Addie is incessantly talking to me.  Her wordless message this time:  

I am here, mom.  I did make it.  You hear me?  Hear this heart beat?  Bear witness to me, mom, to my vibrancy, to my verve.  I am with you.

I am.

Nap is cancelled until further notice.  In that time slot shall be dance parties, finger painting, snow feasts, sing/sign-alongs, lounging, living.  Listening to our hearts beat.

Terri lives in the Midwest with her husband Michael and their two children: Catriona is 11 and Addison is now 7.  The Hart-Ellis family keeps busy in their community raising awareness and action around disability issues, supporting other families, and promoting inclusive community options for people with differences.  Terri blogs at

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 Author:  Terri Hart-Ellis Date Uploaded:  1/19/2011