To Have and to Hold

To Have and to Hold February 5, 2014

Last night after putting you to bed, after turning off the bedroom light and turning the closet light on and leaving the door ajar, after turning on your white noise machine, after uttering my usual nighttime prayer for you, after rubbing coconut oil on the lingering scars on your face and your consistently chapped lips, after covering you with your favorite heavy blanket and kissing your forehead, I left the room and shut the door.

Throughout all this you said nary a word to me. You giggled, burrowed under the covers and patiently allowed me to rub the oil on you, swiping it at with your sleeve as soon as I rubbed it into your skin. Khudahafiz, Jaanu (good night, darling), I said. I love you. You didn’t reply back.

I knew you didn’t really want to go to bed yet. You weren’t show me your classic signs of sleepiness. But still, it was after 9 p.m., so I figured getting you in bed under your cozy covers in the dark would facilitate the sleep.

I was wrong.

It’s been a long time since you had a sleepless night. And I had forgotten how hard it can be. I had buried back in my memory the years of sleeplessness, hours spent awake in the middle of the night by your side rubbing your back, having you fall asleep at 5 a.m. when you needed to wake to get ready for school at 6 a.m. I had forgotten the internal struggle I would have in my head – do I wake you to go to school or do I let you sleep? Or, if you stay awake and go off to school, do I allow you to fall asleep in the afternoon or fight to keep you awake until it’s close to bedtime?

I had forgotten the all the years when I just figured that this was how it was going to be. Along with you, I was never going to have good sleep.  That this was an unavoidable part of your autism, and there was not much I could do about it.

But we figured some things out, and we helped you find good sleep. And so when in the past few weeks we decided it would be best to switch some things up for the sake of your health, I worried about your sleep. Would it be affected? Would we be going back to sleepless or interrupted-sleep nights?

Because I’m getting too old for it. I’m too used where we are now in life – you getting good sleep and your brother and sister also firmly placed in their own rooms getting their own good sleep. I’ve got my worries and heartaches and prayers that keep me up at night now, but that’s all mine – I can only blame myself for that.

So last night I panicked a bit when you couldn’t sleep. Is this an aberration? Is this because of the changes we are making? Will this settle itself out? Will it affect your moods and behaviors the next day? Is this an unwelcome autism chapter reopening itself in our lives again? God, please no.

You held my hand while I sat by your side for two hours. You never hold my hand anymore. But now you did. You yawned and grew sleepy, but you remained restless, tossing and turning, making noises and switching positions – all the while never letting go of my hand.

You put your face on my hand, rubbing your chapped lips on my fingers and tapped your teeth against my ring. I felt your warm breath spread out against my skin as you searched for elusive sleep.

I texted back and forth with your Baba – I’m soooooooooo tired. But he won’t let go of my hand, so I’ll stay here. Let’s see. Just a little while longer, I hope.

And a little longer is what it took. You fell asleep at 11 p.m., and I kissed your forehead again, adjusted your weighted blanket, and snuck out to collapse in my own bed.

What do you think, your Baba asked me. Should we be concerned?

Let’s give it a few more days, I said. Maybe you’ll settle down and find your good sleep patterns again. I’m praying for that. In the meantime, though I definitely don’t want to go back to sleepless or sleep-interrupted nights, I’m always here to hold your hand.


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