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In our sleep, pain, which cannot forget,

falls drop by drop upon the heart,

until, in our own despair, against our will

comes wisdom through the awful grace of God.

— Aeschylus

I have a friend, Brooke, whose sister had cancer. The cancer spread steadily until it had filled her entire body. The pain was terrible to witness. For hours, sometimes, she would scream with the agony of it.

Finally one day, when Brooke couldn’t stand to watch the struggle any longer, she asked her sister, “Why don’t you just die?

Her sister looked at her and responded with a remarkable question. She asked, “How do you die?”

You see, she’d tried. She’d surrendered. She’d let go as best she could. She’d tried to leave her body. She’d prayed to be released. But she didn’t know how to die.

I can relate.

Not about the dying part, but about the truly surrendering and letting go part.

Sleep is, after all, like a little death. And, since the day we got Joseph’s diagnosis, sleep has been difficult for me.

It’s anxiety. When you have a child with ASD, anxiety gnaws at you with the consistency of a rat who has discovered a rotting corpse all to itself.

If you’ve practiced prayer and meditation or other techniques for staying centered and present, then daytime is relatively easy. But when you sleep — ah, then your defenses go down. That’s when anxiety can rear its ugly, poisonous, fang-toothed  head.

In the last week I have stopped running from it. Instead of popping a pill and leading myself through deep relaxation after the dream or the sudden awakening, I have chosen to use instead the light of awareness. I am journaling, asking, why did I wake up this time? What triggered it? What did I dream? Where did my mind go then? How am I feeling?

The findings: at least half the time, it’s a nightmare. Filled with anxiety, terror, and panic.

About Joseph.

In my last nightmare, I was so tired and zombielike that, when I passed by a couple of women and looked at them, my deadened eyes led to them having nightmares.

Wow.

My cousin, Lisa, who also has a son on the spectrum, tells me that there’s chronic anxiety and then there’s situational anxiety. But what if it’s a situation that’s chronic — like autism?

Chronic situational anxiety? asks Lisa.

Whatever its official title, I am amazed at how deep the anxiety goes, and it’s the same for every single other parent I know who has an ASD child.

I know what hasn’t helped: running from the anxiety. Popping a pill to cover it up without even trying to look at it.

Working with the light of awareness is proving to be an amazing thing. It’s like I’m stepping aside and allowing this spotlight to go where it will, to show me what it wants me to understand.

I am humbled to see that, just like every other mortal in this situation, I am so very worried, scared, and fearful.

I am also vulnerable, open, and absolutely sure that I don’t know all the answers.

It’s a mixed bag, just like the rest of life. What doesn’t kill you makes you stronger — but, in this case, strength isn’t about squaring your shoulders and pretending it doesn’t hurt. Strength is about looking into yourself with compassion and awareness. It’s about honoring your process — and it leads to empathy with the process, the journey, of every other human being on this planet.

For me, there is now a new willingness to be aware of the deepest, darkest anxieties. Where it will lead me, I don’t know.

But I am trusting the process. The light of awareness is indeed a light — and isn’t that an aspect of God, after all?

Will this new approach teach me how to let go and sleep again? For three nights in a row now I have closed my eyes to sleep and not opened them again until morning. It’s the first time in over three years that this has happened.

So I think maybe I’m on the right track.

I am also discovering that, when those formerly dark corners are flooded with light, they don’t look nearly as scary.

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At first, it was just changing to a gluten-free and casein (dairy)-free diet.

And that was a lot — especially because, in one of those ironic twists of nature, we covet those things we are most allergic to. So by the time we got Joseph on the GFCF diet, his meals consisted almost entirely of cheese, crackers, yogurt and toast. It’s all he would eat — and, as his mother, I simply couldn’t refuse him and let him starve.

So the diet change was a huge shift for all of us, and perhaps I will write a blog about it sometime. But today I want to cover what happened after the shift.

You see, as the cliche says, one thing leads to another.

Even after Joseph was well into the diet, he was neither pooping nor sleeping through the night. Addressing the sleep issue, our biomedical doctor said, try an air filter in his room. We ushered in RabbitAir (another few hundred dollars into the Cure Autism kitty) to clear the allergens from his bedroom full-time.

Then I cleaned EVERYTHING in his room, looking for mold, dust, and anything else that might possibly maybe perhaps please God be causing his waking up — so that we could eradicate it and have a kid who slept through the night.

When that didn’t work, I did more research. As are most ASD moms, I became a Google Queen. Check other allergens, Google urged me. What is in his shampoo, for instance? Is there aluminum in your cookware? How about your household cleaners? Laundry soap?

Out went anything artificial, and ‘most anything with a fragrance. In came Le Creuset cookware (let’s don’t even think about how much that put into the Cure Autism kitty) and environmentally-friendly laundry soap.

I learned to make my own cleaners. One more thing, I grumbled to myself when I began. As if I don’t have enough going on in my life.

But the truth is, a little distilled vinegar or baking soda can go a long way, and they are incredibly easy and inexpensive to make. The Google Queen found many “recipes” for these things online, and is very happy with how well they clean.

The bottom line is, we were always into living naturally and greenly (new word — do you like it?). But Joseph’s sensitivities forced us to do it more deeply, more thoroughly. And I LOVE living in a chemical-free home. It feels light and clean and fresh.

So, going au naturale is just one of those unexpected gifts that we didn’t see coming on this most interesting journey.

If Joseph wasn’t sleeping through the night most of the time, we would pull up his carpet and put in wood flooring.

But I dare not try to fix what’s finally working. Sleep is one of the most precious of all human gifts, and, knowing the precariousness of it, I thank God every morning for another night of it.