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