Rhema’s got as much love for sleep as I do for field rats.
The latest boycott on sleep started about a month ago, around the time Brandon left (perfect timing!). Waking at 1 or 2 am, she’s wired and ready for the day.
Per doctor’s order, she’s on quarter tablets of a sleep aide twice during the day. And then a full tablet at night. One would think all this would help her sleep at night. Of course, one would be wrong.
(And did I mention I have a job now? I’m a zombie with a smile.)
I’m most concerned for Hope – that Rhema’s midnight antics disturb her sleep as well. When I tuck her in, Hope often encircles herself with books in her bed. She simply explains the need for all the reading material: “For when Rhema wakes me up.”
This past weekend Brandon came home for a weekend visit (yah!) and we headed north for an overnight trip. My frugalness landed us in The Roach Motel – a tiny room with two beds.
10:00 pm. “Please, Lord, let her sleep,” I pray.
The sleeping pill takes effect, and she dozes. I instruct the others: Don’t move, don’t sniffle, don’t breathe. If you have to pee during the night, hold it. (Just kidding, I gave them permission to use the bathroom if they absolutely had to, but if they flushed the toilet they would bring down the Wrath of Mama).
12:35 am. Rhema’s loud, ceasless sing-songy tune pierces the air.
I’m still praying, “Please, Lord, let her sleep. Please.”
She sits up in bed and begins the Concert of the Hum in fortissimo, with crescendos and decrescendos that could rival Pavarotti. Then she coughs. She likes the feel of it in her throat, and turns it into a guttural hacking. The louder, the better – hacking interspersed with humming.
1:30 am. Brandon takes her to the bathroom. I put Hope in the bed with him, and I try to settle in with Rhema.
2:30 am. She’s jumping on the bed, her voice at a fever pitch. She jumps off our bed and climbs into Brandon and Hope’s. She starts jumping up and down on them, and I catch her and drag her back to our bed.
I try to holding her, but she’s offended by my closeness. She grunts and hits herself, and she continues every few minutes, grunting and hitting.
My eyes hurt. Desperate for sleep, I stumble up in the dark and fish through my bag for the iTouch. I turn down the volume, and for the next hour she plays games, but she is not silent. She laughs. She jumps. She babbles and sings. She hits herself.
3:00 am. I contemplate the puffy bags and dark circles under my eyes. What to do? Vitamin K, cucumbers, laser surgery, beheading?
3:30 am. All hope of a good night’s sleep gone, I am left to think, and I am spitting mad at autism. That day, we’d tried to have a typical family day at a small amusement park. We’d done it, but it had been a struggle. Within minutes of being in the hotel room, we were scrubbing poop out of the tub and off the floor. Now we would listen to her fight, battle the storm in her head all night.
Before we had children we used to love to travel. Brandon and me, that was our thing. At 6 ½ months pregnant, I hiked up to Neuschwanstein Castle in Garmisch, I boldly climbed the 350 steps to the dome of St. Peter’s Basilica. The year before she was born we stayed in Munich, Barcelona, and London. There was Paris and Poland, and Christmas in Rome. I wasn’t worried about a child cramping our style. “She’ll be my easy-going, travelin’ baby,” I’d say, sure of it, images of her slung in a carrier on my back.
I exhale bitterly.What a cruel joke. Thank goodness we traveled when we had the chance. Now look at us. We can barely manage a trip 100 miles from home. And the future feels as dark and stifled as this motel room.
Beside me, Rhema begins to weep. Just minutes earlier she was laughing hysterically. Now she’s sobbing, and we quietly listen, our beds on a sea of tears. I am so tired, my hands automatically reach out to comfort but I don’t understand anything. I don’t know what she fears, why she laughs and cries and fights, why her brain never stops racing. Her sadness – with a source I cannot name – brings me low.
I go back to that night in Rome. I had jumped into a subway, thinking Brandon was behind me. As the doors closed I’d reached out for him and the subway doors clamped on my arm, behind my wristwatch. I couldn’t open the doors, couldn’t pull my arm in. I was in absolute panic and terror thinking the subway would jet through a tunnel and chop off my hand. He-man, aka Brandon, saved the day by prying the doors apart before the subway could take off. But I remember vividly my pounding heart, and how Rhema seemed completely upset inside me. She did not settle for hours. That was it. That must have been the moment her brain development went off course. My fault, my fault.
(Now I honestly don’t believe that. This is the silly talk going on in my sleep-deprived head, and in moments of discouragement and trying to make sense of hard stuff on long nights, I’ll tell myself just about anything.)
4 a.m. Weeping may endure for a night, but joy cometh in the morning. (Ps. 30:5) Really, God? Really? Something in our darkness dries tears like a gentle breath on the cheek. Amazingly, the beautiful child beside me closes her eyes, at peace at last. My dreams of her are sweet.
5 a.m. She’s moving beside me again, her knees digging into my back. She’s got her iPod Touch. She’s had it for almost a year and until now she’s never figured out how to turn up the volume. Somehow she’s found one of the bajillion songs I downloaded on the thing eons ago – a Sara Groves tune.
And I laugh.
As the words fill our small room and the early sun lights up a new day, I shake my head in wonder and laugh with Rhema, with God.
It’s going to be alright.
I can tell by your eyes that you’re not getting any sleep
And you try to rise above it, but feel you’re sinking in too deep
Oh, oh I believe, I believe that
It’s going to be alright
I believe you’ll outlive this pain in your heart
And you’ll gain such a strength from what is tearing you apart
Oh, oh I believe I believe that
It’s going to be alright
We’re going to be alright.”
All of us, all four of us, pull ourselves up for another day. Ready to face whatever it holds. I don’t know how we’ll do it, but I know we’ll do it together. And with the Lord’s help, we’re going to be alright.
Along with the song, a verse and a promise fill my heart, give me strength:
This I recall to my mind, therefore have I hope. It is of the LORD’s mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness!