I Will Rest You

I will lie down and sleep in peace,
     for you alone, O LORD,
     make me dwell in safety.  Psalms 4:8

amb_eeg2

Rhema during an ambulatory EEG

 

Rhema’s brain and sleep have always been in an argument.

When she was a baby, I was baffled by the fact that she did not sleep. I thought that babies slept, and mine simply did not. She was colicky and seemed uncomfortable in her own skin. Just as she would start to fall asleep, she would flail and shake. Even when swaddled, she would shake. Sometimes, she would briefly turn purple.

I was a clueless, new mother. I read books for advice. I tried home remedies and supplements. Nothing seemed to work, and my baby would scream at me all night long. When I called the nurse, she always brushed it off as colic and suggested I try the things I had already tried. Brandon was in Iraq at the time and there were so many long, sleepless nights, that I seriously feared I might lose my mind, or even worse, hurt my baby. (I suspect I had postpartum depression and did not even realize it.)

There was a television channel called PAX that featured a program from 1 a.m. to 5 a.m.  It was simply Scripture verses set to instrumental music and nature scenes. I could not hear the music over the crying, but I could read the words. The program was my lifeline during those long nights. (Some time later I wrote the program creators a letter and sent a donation – I basically told them they saved my life.)

 

Fast forward a couple years later and we are sitting in the neurologist’s office at Children’s Hospital. He tells us that Rhema’s EEG results indicate that she is experiencing continuous epileptic activity during sleep. The doctor is excited in a wierd sort of way. He shows us graphs and highlighted images of her brain: In drowsiness, the electrical discharges increase in “rhythmicity and frequency.” In the transition from sleeping to waking, there is even more epileptic activity… on both sides of the brain. One report states that they were unable to get a normal reading for more than 2 seconds. ‘This is a very abnormal study’, it reads … ‘Landau-Kleffner syndrome.’

I’ll never forget that day, sitting next to Brandon, with baby Hope in my arms and Rhema, in her own world, pinging off the walls. It was a day where everything finally made sense and absolutely nothing made sense. And I felt tired, achingly tired.

 

Fast forward to today. Rhema has been unable to sleep, really sleep, for the past month and a half.  She is up all hours of the night, screaming in frustration, crying, laughing hysterically, humming, babbling, crashing, banging, pounding her feet against the headboard. For safety reasons, we’ve had to remove everything from her room except the bed and a few books (in which she has torn the pages) – the dresser, toybox, even the light bulbs are gone. She goes through phases like this, and she amazes me with her ability to function during the day and even do well in school and therapy on little to no sleep.

But this latest run has been particularly brutal. As I lay in bed, listening to Rhema’s antics, it’s heartbreaking for me to wonder about the electrical storm raging in her brain. Lately, it’s taking a toll and we’re seeing an increase in meltdowns, aggression and even self-injurious behavior.

 

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” Matt. 11:28-29

 

I’m for real here. I’m not trying to be Happy Christian or toss out pat Bible verses. Our load is heavy, the road stretches out looooonnnngggg before us, and we get weary. I’m angry in the morning at the huge circles under my eyes. 

But there is a rest for the soul. And I’ve found it only in God. It is a grace-given, saving rest that does not depend on external circumstances. For me it is rooted in the fact that I know the Lord is faithful and true. Time and again, He has blessed us with provision, guidance and miracles, big and small.  In the words of a favorite song, “I can’t remember a trial or a pain He did not recycle to bring me gain. I can’t remember one single regret in serving God only and trusting His hand.” A rested soul can refresh a weary body. His promise, when we come to Him, is literally, I will rest you.

 

So tomorrow, it’s back to Children’s for a 24-hour EEG. Although we will have to wait for some of the results, I suspect an increase in her current anti-seizure meds is on the horizon.

 

Meanwhile, I’m learning to rest.

 

Return unto thy rest, O my soul; for the LORD hath dealt bountifully with thee. Psalms 116:7

 

Note: Many individuals with ASD have sleeping problems. Sleep issues rarely indicate a seizure disorder like Landau Kleffner syndrome. An EEG will rule this out. 
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33 thoughts on “I Will Rest You

  1. Having a child with autism is like being in a state of permanent jet lag.

    LKS is pretty rare, isn’t it? It’s funny, it was the first thing that Kayla’s neurologist thought of, not autism. Although the EEG ruled that out.

  2. I feel for Rhema and for YOU. Daniel had terrible sleep problems but Rhemas sound even more profound. I’m glad you are going to have another eeg. Sleep is SO important to health. So besides sending you a giant giant hug bc I remember walking around in a daze for YEARS. I didn’t realize it was a daze until I started sleeping. But I will suggest this. If you need to have someone come over in the afternoon so that YOU can nap. Please please do it. You need to be stong and healthy for your family. My body was so beaten down I started having heart palipitations all the time and had to go to a cardiologist. After testing they were determined to be “benign”, but as I was warned by a cardiologist that I HAD to find a way to sleep, I knew something had to change. He told me that the heart is a muscle that must have rest to function properly. So do what you need to to help Rhema, but don’t forget about you. <3

  3. Jeneil, I am so glad that you blogged about that. It helps us to know how to pray more specifically and it also shows such inner beauty – thank you for being so real in the joys and the struggles.

    These are the moments when I do wish that you lived closer so I could come watch the girls while you rested. I do that for my neighbor occasionally. Her son is entering puberty and his seizures have increased substantially. She too is worn, but I am constantly amazed at the strength of you both.

    “I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.” Ephesians 3:16-19

    *HUGS* & prayers! Let us know how it goes.

  4. Jeneil,

    I am so glad I read your blog today because now I will be thinking especially of you and Rehma tomorrow. I can only begin to imagine the stress of the day ……….

    I will do my best to send positive thoughts and energy your way. And I will pray for sleep for everyone in your family.

    Leah

  5. She is beautiful.

    I am so sorry about the sleep and can most certainly relate. My son didn’t sleep for about a month and a half due, we later found, to him developing an intoxication to the meds he was getting. The hard part was that he wasn’t sleeping and neither were we, which made for a very irritable, exhausted household. Our solution was a hospital stay for him that lasted a month, but he has come out the better for it. And sleeping through the night.

    I wish you some rest — for you and Rhema.

  6. You amaze me, as always, with your strength. Can you get respite after the EEG so you can get a little sleep? Remember, you can’t take care of anyone if you don’t take care of you first.

    • Funny you should mention respite. We’ve been trying to get respite through our health insurance for months. It has not been easy.

  7. We had such a nice time with Brandon yesterday. Wish we could have seen all of you. Praying for a good night’s rest for you tonight back in strong arms. And for answers with this EEG that may bring sweet deep long sleep for Rhema. I can’t imagine functioning as she has after so many sleepless nights. She is incredibly strong – it runs in the family.

  8. My heart hurts for all mothers who do not get enough sleep and then wake to a day filled with trials most can not imagine. I hope they can find something to help her sleep long and well.

  9. Jeneil, I’m sorry to hear that Rhema is having difficulty sleeping again. And, whew, that is a heart-rending photo of her! Look at that beautiful face and those beautiful eyes!

    I’m going to respond to you shortly with my discernment on our e-mail conversation. In the meantime, this is what I’m led to pray:

    Oh, Lord, would You break the yoke from Rhema’s neck? Would You bind Yourself to her like a garment, completely insulating her in Your love and peace? Leave no gaps, Lord … no room for residuals. Lord, You Who never slumbers nor sleeps, would You grant Rhema and Jeneil the mercy and grace of restful and restorative sleep? Grant sweet sleep to these that You love. Protect them as they rest; fill their bodies, minds, and spirits with Your goodness even as they slumber. I pray in the name of Jesus Christ, Your perfect Son & My precious Savior. Amen.

  10. ok, i don’t take insurance. name an evening .. or let’s figure out a time over a weekend. i’m coming over and you’re leaving.

    no arguments.

    e-mail me and we’ll figure it out.

    you listening, woman?

  11. SO glad to hear that she slept well last night! (Hope you were able to sleep too…)

    Praying that the EEG is going well and that you get some helpful answers.

  12. …this blurry, dizzy, psychedelic picture is perfect to depict sleep deprivation, while Rhema’s eyes are perfectly clear in the midst of it. How does she do that? If I miss a few hours for one night, my eyelids stick to my eyeballs, the whites of my eyes are bloodshot red, and my expression just says, “Huh?” Rhema’s look is ethereal, somehow peaceful, while she’s sleepless and has electrodes glued to her head. She’s beautiful.

    We’re praying for you all today and tonight and for the results of this EEG.

  13. ((((hugs)))) we’ve been through bouts of no sleep although not with seizure activity like you’re talking about. As babies, our boys had such a hard time settling down to sleep too, and they did that startle thing, although I think it was more sensory / overstimulation. And more recently, a certain boy who seems to be able to stay up til all hours, wake up in the middle of the night for more, and then still get up at the crack of dawn ready to tackle another day. I know how exhausting it can be when we don’t get sleep though, will definitely keep you and your family in my prayers.

  14. Thank you for reaching out from Barbara’s guidance. I know for certain it would have taken absolutely too long to find another parent with a child with the same challenges.

    I’m forwarding your post to my husband. Your descriptions are EXACTLY what our son does. We’ve been screaming about this for about 4 or 5 years. So much damage done.

    Please email me directly. Until then, I’ll be reading. My thoughts are with you and your absolutely beautiful Angel!

  15. His grace is sufficient. Every time I look on your blog page I’m filled with conviction, moved to tears, and filled with compassion. I will commit to praying for rest for dear Rhema’s mind and for your body, heart, and mind, but your soul sure seems at rest. Your faith in God is sooo deep; I can literally feel it every time you proclaim your faith in Him. I never used to understand the scripture, “as deep cries out to deep”, but now I understand and know what that is.
    Neily, I am praying for you and am so proud of you for leaning completely and totally on the Lord. You have every reason to gripe and complain and rebel against Him, but instead you cling to Him and allow Him to shine in you in a way that is too powerful for words. I love you….
    Perhaps it’s time for Nylis and Hope to have a little outting some afternoon so that you can get a nap :)

  16. Oh dear one, I am praying for your dear, beautiful Rhema and for all of you. I am inspired by your strength. Exhaustion is the biggest theif of joy and optimism, so the fact that on little sleep you’re able to speak to us all with such conviction and wisdom is amazing. I love you and am thinking of you.

  17. “I see people who have learned to walk in Faith with Mercy in their Hearts and Glory on their faces”-Rich Mullins

    And I see my sister.

  18. This is SO beautifully written. I remember ruling out Landau Klefner, as well as Rhett’s Syndrome with my (now 14 year old) daughter when she was around 4. I’ll be praying …

  19. Pingback: 25% « a diary of a mom

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