In the morning…

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.

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.”

 .

Really.

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!

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20 thoughts on “In the morning…

  1. Your posts never cease to amaze me. Love this J. How you can write so beautifully on so little sleep is astounding. I’m so glad that your hubby was able to be with you even if it was only for a few days. Wishing him a safe and speedy return home. Xoxo

  2. Your hope…your courage, you honesty, you ability to pour strength over others by showing your own weakness. You have given me hope….I am forever grateful.

  3. Sleepless nights are new to me. My littlest angel, Jonas, who was diagnosed with ASD last year was always a perfectly sound sleeper. My husband and I figured it was the trade-off for all of the challenges that we face each day, that we ALL of us would have restful sleep each night. And we did. We slept soundly for more than 3 years. Thankfully. But recently my little one has been having trouble falling asleep. It sometimes takes hours, which burden his older brother whose body and mind are tired, ready for sleep because they share a room. And in the middle of the night when he awakens again…Oh, how I miss sleep. Thank you for sharing this very powerful piece.

  4. I remember those sleepless nights. Mine was barely in bed by one and up by five most days and that was when we were lucky. My son takes a medication cocktail of sorts in order to get the sleep his brain needs. He had severe sleep deprivation and I was getting concerned that there may be some permanent brain damage with such lack of REM sleep. Contact me and I would be happy to let you know what he is taking to see if it is something appropriate for your daughter. She looks to be happy and very well loved!

  5. Tell me, fellow creature of the night, how you always manage to do it? I’ve got the zombie part down, but the smile is somewhat jaded.

    This post brought back a repressed memory of hiking up to Neuschwanstein Castle with an almost one-year old Pudding. I’d contracted food poisoning in Garmisch, but was determined that nothing would stop be from doing it- no babies, no illness, no jet lag, nothing. I felt like it almost killed me, but I have to say, totally worth it! Funny that. 🙂

  6. Oh my goodness – I wasn’t expecting that song at the end of it – wow! God is so good!!

    I sincerely hope you get some quality sleep very soon, though.

  7. I know this desperation all too well. But the song.. I don’t know it! Will get it on iTunes tomorrow..

  8. I love those words “You will gain such a strength from what is tearing you apart” So true and so wonderful. Reminds us how our lives and our children can bless us even through our trials. Your sweet girl somehow manages to speak to you in such amazing ways. She is so blessed to be loved by you. I am so sorry for your pain and struggles but I am so thankful for your blessings

  9. All will be well, just hang on to hope. Hope is what got me to where am I today with my 6 year old who has Autism. He would wake up and literally scream for hours and there was no calming him down. I never got through it, but with faith, love and hope, all things got better. I love your blog, I love your writing. Oh and I see that she slept last night! yay!

  10. I find it so courageous that you release those thoughts out into the world, making them real – the twisted, ridiculous things that pop into our minds in those exhausted zombie moments. I have had so many thoughts like that – did I ‘make’ RM the way she is? is it punishment for things I have done in younger days?

    Our minds can play awful tricks on us when we are least able to quiet these assertions of lunacy.

    Our Lord does indeed keep you and hold you up when you are so tired, Love. And He surely reminds you of that in those precious moments when a simple song can pull you back to Him. It is Rhema’s intention to do the same – she knows ;0)

    XO

  11. Your writing is so lovely, the sleepless nights and the desperation so familiar and dreaded. Don’t know if you recall, but John used to be up every night from 1 to 5 a.m. having a party in our bed. Medication has made all the difference for us but I know every child is different. I’m glad to read she slept through the next night!

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