If you’re on Facebook with me, and your mind hasn’t gone into automatic, blank-out mode when you’ve noticed I’ve posted one of my super-long posts, you’ve probably read some of my attempts at poetry. I have no idea why I write poems, or my version of them. The closest explanation I can come up with, and yes, it sounds a bit kooky, is, the words pop into my head and I just have to write them down.

Please note, I absolutely avoided saying, “I heard voices in my head." Er, I don’t. Well, maybe sometimes, but not really. I think it’s the same voice and that is an important technical difference, isn’t it? Kind of androgynous and generally helpful, it concentrates on telling me what to write. It’s really very friendly and exhibits no bloodthirsty tendencies. So no, I don’t really talk to myself; I talk to The V, and even call it that, The V. And in my defence, I don’t think that’s really weird for someone who names the GPS in the car because it’s more comfortable that way to curse it. And I curse it a lot, Martha that is, but that’s another story.

I’ve digressed, as usual. And am rambling. It’s probably because I haven’t slept in a while. Thursday night, just as I settled down, unhealthy cola by my side, to write my piece, my daughter, with an impeccable sense of timing, woke up and decided she wanted to play. She had just fallen asleep an hour-and-a-half previously, delightfully climbing into Mommy’s lap, cuddling and settling down to nap. Daddy had then carried her into her tent, and we, fond, delusional parents, had smiled at each other as we looked down at our sleeping baby. All was well in our little corner of Virginia. Dad went to bed, and Mom settled down to chat with The V and write.

And then Miss K woke up, rested, recharged, and raring to go. It was 12:55 am on Friday. She crawled out, ignored the fact that I had covered my head with a blanket, pulled it off me with a dismissive flick, and handed me her ever-present bunch of balloons and firmly put my hand on it. It was time to play. As firmly, I took her hand off mine (yes, yes, I felt like a heel), and made the American Sign Language (ASL) sign for “No". Those are our two most important signs, by the way. “No" and “Stop"—just like for parents of children who can hear, and who aren’t autistic. There was no way she was going to think it was okay to play at 1 am.

Her lower lip trembled pathetically, her big beautiful eyes welled up, her entire body looked like it was about to go into one big tremble, and I couldn’t help it, I really couldn’t, I laughed. Note to everyone who thinks children that cannot hear you, haven’t a clue what you’re saying, or thinking—you, my friends, are so out of touch with reality! My five-year-old princess saw me laugh, her face changed to one ferocious scowl, she looked exactly like her dad in that instant, and I could almost see her brain go into mental overdrive as she sat down in front of her Mylar, and silently contemplated her next course of action. As soon as she saw me looking at her, though, she moved the balloons to another corner, and decisively turned her back on me. Mommy was definitely in the doghouse.

I told myself I was just fine with that, and ignored her. I couldn’t use the laptop though, because the light from the laptop, from anything really, set off episodes of biting, or crawling under something to avoid the light, and I didn’t want this to turn into that kind of painful night. We had some little light coming in from outside, and that was really it. She still won that round, by the simple measure of keeping me up for the next three-and-a-half hours, even though she did nothing much but keep her back to me and focus on the balloons.

She stimmed with her fingers in the air, rocked a bit, chattered to the balloons, but didn’t move. I offered her warm milk, which was rejected, as was cheese, companionship and any attempt to get her to sleep.

So after a bit, I let her be, and as I watched her body droop, and her mind not let it rest, I decided to burrow under the blanket and dig out a poem I’d written a few months ago. This is that.

Insomnia

It’s our nightly ritual, this battle.

I wait; she aims to bait me out.

I smile, knowing she aims to rattle

Irate, she scolds me with that pout.

A wary glance, a whirring mind

A question unspoken; yet firmly asked

I shake my head, to gently remind

It’s time to wind down; our day is past.

She spins, she stims, then there’s that tug

As little fingers move in desperate plea

I hold out my arms, for an umpteenth hug

Even as my minx chortles with glee

With Parry, Tarry, Tussle & Try

It’s a very strategically planned advance

With Coax, Cajole, Crumple & Cry

She dallies with this daily dance.

The witching hour, comes and goes

To bed, to bed, my mind hastens

I breathe deep; take on an old foe

Tell my buzzing head to have patience.

Her beautiful eyes are heavy-lidded

Her body desperately wants to sleep

But her mind, that mind, won’t admit it

And as I watch her battle, I want to weep

Tired limbs sway side to side

Then the carpet beckons my little girl

Yes! She’s calmed that beast inside

To settle in a fetal curl

I want to hold, tell her all is right

But practice tells me, ‘let her be’

No bedtime stories end her night

No lullabies for my baby.

But as I watch, one eye opens

She beckons, in her imperious way

I touch her back, soothing, stroking

We’ve made it through another day

I look up as the clock beeps twice

Look down; her thumb’s left her lip

I gather, rise, kiss now-closed eyes

Stroke one cheek with one fingertip

I lay her down, tuck in the bear

She twitches, smiles in her sleep

Reassured, I take my cares

And burrow them somewhere really deep

It’s a moment’s rest, and perhaps quite fleeting

I know there’ll be storms & strife & sorrows

But what use is Life if you get beaten

Or always plan for troubled morrows?

Bit by precious, hard-won bit

Life’s taught me a real vital lesson

And this one in stone should be writ

Give thanks for every little blessing.

So I close my tired eyes, and send out a little prayer

Keep her safe, keep us strong, help us do & deal & dare

Test us, don’t best us; let us grow; let us be the best we can

Help me help my darling child, let me be more than I am.

And in my dreams, I see Hope and Happy

They go together, these old friends

Banishing Shadow, that old harpy

And so I heal, begin to mend.

So, this is our little story

A rite of passage I don’t ignore

The moral, well, not quite glory

Just win those battles — you’ll win the war

The thing is, it’s not quite easy to always let your child fight her own battles and curb her own demons. But sometimes, it’s the important thing to do, because you really can’t do anything else, but also because she needs to be able to figure it out herself.

And so it was with Kyra last night. It took a while. She figured it out and settled down. I haven’t sent her to school this morning as yet; we wanted her to have at least five hours of sleep. I will wake her up shortly, it’s about 9:30 am now, but as I end this piece, another little thought pops into my head.

It’s a version of American theologian Reinhold Niebuhr’s ‘Serenity Prayer’, immortalized by AA, NA and everyone else in need of help. “Dear God, give me the strength to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference." As I write these words, I can hear rustling in the tent, and some laughter. Kyra’s up and obviously in a better mood. It’s not bright and sunny outside—it’s grey and a little chilly. But it is a new day, and a new beginning. Our night is behind us.

The Moppet Show is a blog by Kadambari Murali Wade about her experiences of bringing up a child with multiple special needs. A new blog entry will be published every Friday. Read the previous blogs here.

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