When the storms don’t cease

Every year on the day before Thanksgiving we meet with Rhema’s neurologist. It feels like tradition now – to go to Children’s Hospital when the halls are less busy and Dr. C can spend extra time with us.

I’d done my research before the appointment. We’d talked over the pros and cons of keeping Rhema on her current anti-epileptic med. (I’ve written before about diazepam being the only drug to keep Rhema seizure-free. The downside is drug dependency with long-term use and Rhema has been on it for over a year). But when we walked into Dr. C’s office, I was ready.

And then the curve ball socked us in the gut.

“Her latest EEG was not clean. Far from it. In fact, her brain is spiking 40 times a minute, increasing during sleep.”

Hope was climbing over me, fighting Rhema for a toy.

Huh?

“It would seem that the medicine is no longer working. Her EEG results are even worse than before.”

We stammered. Really?

Brandon even asked if there was some mistake. Dr. C assured us that the test was accurate.

“I, I mean, we’ve seen some challenging behaviors lately… and some poor sleeping and it seemed like she’d lost some skills. But, but, overall she’s been doing well.”

Dr. C was scribbling notes, so I rambled on.

“Ever since she started attending Futures School her language has greatly improved. She understands so much more now, she’s learning to trace her name, and she can say single words when prompted!”

Dr. C was quiet while Brandon skimmed the report and I numbly searched for a snack for the kids in my bag. We’ve lost our trump card, I thought, her brain is now resisting the only drug that’s ever worked.

“What’s background slowing?” Brandon asked, looking up from the report.

Dr. C looked at us as if we should already know. “Well… it can indicate structural damage to the brain. And, you know, developmental and cognitive delay.”  

I laughed at this. I really didn’t know what else to do. That very morning I had dressed her in stylish 6X jeans and then scrubbed her mouth out after she ate a bunch of crayons while my back was turned. Yes. Developmental delay. But everyone else who knows and sees my girl – they see her in the context of the autism and the delays and the behaviors. They don’t know her apart from it.

But I still see something different. I still see an angel baby in my arms with the world at her fingertips. I still see her singing in the children’s choir, playing sports, going shopping with me, learning to drive, going on her first date, kicking butt in college, giving me a grandson. I still see my dreams, I still see my future, my very life in her.

So when you say ‘permanent background slowing is associated with poor cognitive prognosis’, it still knocks the wind out of me.

Sometimes I still don’t understand how this can be.

We discussed our options with the doctor. We’ve exhausted the anti-epileptic drugs. There are only two things we have not tried: ACTH steroid therapy or seeing if she’s a candidate for a brain surgery called multiple subpial transection (MST). The steroid therapy has a host of very unpleasant side effects and seems to only be effective for short periods of time. And I’m just not in the mood right now to be slicing up my kid’s brain. I gave an emphatic ‘NO’ to both.

We made plans for another EEG in a few months, but I felt like a chapter was closing. We’ve wrestled this seizure disorder since she was two years old. We’ve put her on drug after drug. At least for now, Mama says, No more.

We took the girls home.

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That night while Brandon was reading the Bible to Hope, Rhema crawled into my lap. She never does this. We’d given her a sleep med, and as I held her head in my hands, she slept. It was a gift.

I looked at my watch and counted to 40. Forty times a minute, her brain is seizing. Have mercy! Dr. C has explained that it’s like a radio station that keeps losing signal or a computer that reboots endlessly. He said that when she sleeps, the quality of her sleep must be very poor. Most of us just take sleep for granted. But drowsiness alone sets off an electrical storm in Rhema’s brain. I want to scream at the LKS monster that punishes my daughter every time her body needs to rest.

I just stared at her. So achingly beautiful, my little girl.

“I’m so proud of you,” I whispered. “What you’ve been able to do, what you’ve been able to learn considering everything that’s working against you. You’re amazing. You’re amazing.”

Brandon read from Psalm 4:8.

“I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.”

Peace.

Please?

In the storm, You are our peace, Lord. Thank you.

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(Been listening to this song ad nauseum called Perfect Peace by Laura Story.): 

stay close by my side
keep your eyes on me
though this life is hard
i will give you perfect peace

in this time of trial
pain that no one sees
trust me when i say
i will give you perfect peace

and you'll never walk alone
and you'll never be in need
though i may not calm the storms around you
you can hide in me
burdens that you bear
offer no relief
let me bear your load
cause i will give you perfect peace
stay close by my side
and you'll never walk alone
keep your eyes on me
and you will never be in need
though this life is hard
know that i will always give you perfect peace
i will give you perfect peace

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