A thousand sleepless nights.

Olivia was a good sleeper when she was little. I remember the first week home, she slept six hours straight. Brian and I were stoked. It was an awesome second attempt at surviving with an infant in the house. We had been traumatized with Jacob. Colic, sleepless nights, colic, sleepless nights. COLIC. Do you get my drift?

So, we were exchanging high-fives over this cool little girl who seamlessly fit herself in to our schedule.

Ha.

Hip surgery at 8 months came with some odd sleep patterns. But, that was understandable. After all, she was in a body cast for almost three months, legs sprawled to a position her legs would never allow without muscle cut. Once the spica cast came off, we got back into a groove, and sleep came again.

I don't remember how old she was when our nights started unraveling. Three, I guess? I do remember that there was a year and a half time period where the only consistency with her sleep pattern was that we could never expect a full night's sleep. When our minds finally turned to Jello, we went to the doctor and started her on sleep medication. Clonidine. Worth. Its. Weight. In. Gold.

A bad night every week or two was a great improvement, considering we had been getting a GOOD night every month or so. Until... the last couple of months, when the pattern reversed itself... again.

After two weeks of getting up by 3 a.m. every day, we put plan B into motion. The neurologist said to try melatonin with the Clonidine first, but that didn't do a thing. We didn't expect it to, really, because melatonin had never shown us any good results before. Next step, a pill and a half of Clonidine. No luck.

Last week, we gave her two pills a night. She has still been waking up almost every night, but is only up for a short while and goes back to sleep on her own in her bed. Yes! We'll take that! Two pills, it is!

Then, night before last, plans changed again. I woke up at 12:45 to the sounds of Olivia crying. Not sobbing, just a quiet cry. I went into her room and heard her saying, "Is-okay."

When she is hurt or upset, we will tell her, "I'm sorry. It's okay." So, it's what she says to us now when something's wrong. "I sah. Is-okay." Her sleep-safe bed was delivered this week, so I was able to put the side rail down and climb in bed with her. She grabbed my arm and pulled it around her. She seemed so anxious, so wrapped in fear. She wouldn't let go. She seemed as if she was trying to calm down, only to be consumed again with anxiety. "It-okay." Soft cry. Holding my arm.

I hate autism in moments like this. My heart breaks when my girl needs me to understand her and the best I can do is guess. She deserves more. I know nothing else to do but hold her, try and comfort her, reading her cues to figure out if what I'm doing is helping at all.

She didn't open her eyes for the hour and a half I was in bed with her. She would try to sing, try to be happy. Then, a wave would hit and the anxiety would be back. "It-okay."

Brian got up with her at 3:00 and she finally opened her eyes. They went downstairs and she was up until 6:00. Brian said she was not upset at all during that time.

We wonder if she had a bad dream. We wonder if the sleep medication was keeping her from waking fully, and maybe it was frustrating for her.

Last night, we went back to a single pill. And she started the day at 3:00 a.m.

This is hard. These are days when I dream of a world where we didn't have to live by a schedule. Where we could fit into her world, whenever she would let us, and not be burdened with the expectations of the "normal" world. Where sleepless nights and diapers and wheelchairs and humming and stimming weren't round pegs to fit into the square hole that is this world.

These are the days I want to close my little family off from the outside world and live in a cocoon of love and patience. (And naps. I've had four hours of sleep, and I'm a nine-hours-of-rest kinda girl, so yes, naps rank up there with love and patience today.)

The first time I heard the song Blessings, I was touched by the message.  What if trials of this life are Your mercies in disguise.

Then, after hearing it a few more times, I finally listened to the words in the chorus.

Cause what if Your blessings come through raindrops?
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near?