A couple years ago Rhema was hospitalized for her seizure disorder. Doctors decided to give her a bolus – an extremely high dose of diazepam/valium – in an attempt to shock her system out of seizure mode. The medication accomplished its purpose, but initially had a paradoxical effect sending Rhema into a violent fit. She was disoriented, aggressive, out of control, inconsolable. I’ve never seen her so agitated, and she reminded me of a Bible story in which a boy would hurl himself into fire. It was so dramatic that the attending physician ordered a medication to counteract the effects of the diazepam. But before the nurse arrived with the new med, Rhema collapsed like a zombie into Brandon’s arms.
Fast forward to today. The diazepam protocol is no longer working to quiet Rhema’s brain. In a couple months we will most likely begin a long process of weaning her off the med. It’s quite possible that Rhema has grown dependent on the drug so we intend to go S-L-O-W.
Before we go down on the dose however, we have actually gone up. In a last ditch effort, (I had to be talked into it) we have actually increased the dosage to the highest we can – based on her weight – without having to hospitalize her. We wanted to try one last dose increase to see if it has any impact on the spike-wave activity in her brain during sleep.
The nights have been rough. We’ve seen rages – smaller in scale but similar to the one we saw in the hospital years ago. There’s shrieking, grunting, rolling on the floor, thrashing, stripping, total non-compliance. She’s put a hole in the wall, she’s barricaded the door with the bed – still the only object in her room for safety reasons.
It’s quite disturbing, and at times it’s been really hard not to lose my cool. When she’s like this, I have to remind myself that it’s the medication, not her.
Rhema does not have the words to express how she feels or what she needs, and it is incredibly frustrating for her. Trying to comfort her or hold her does not work – I’ve been pushed away, kicked or head-butted one time too many.
But it’s so important to me that she know she’s not alone, that I’m there, that she is safe.
I think about what it means to love someone at their most unlovely moments. And what it means to love someone when it seems they’ve rejected you. And what it means to show love without words or touch. My daughter teaches me. Some nights, loving her means sitting in her room at a distance and singing to the walls as she tantrums.
It’s our time.
Eventually she calms, and I’m able to put her in bed. I climb in beside her. She whimpers and hums almost nervously, incessantly, and I tell her I love her. I tell her how proud she makes me. Whether she hears or understands me, I’m not so sure. Her face never changes expression; she stares at nothing, she continues to hum.
Every night I try to imagine what it’s like to have sub-clinical seizures firing in your head as you try to sleep. I so wish I could fix it, but I can’t. But I’m her mother and I have to do something. I give her my arms around her whenever she can stand them, my head next to hers, my voice quiet in her ears.
The other night was a surprisingly good night. She got her medication and did not fly into a rage. I planned to dump her in the bed and be on my way.
But then she did something that made me know that the time we’ve spent together over the past couple weeks were not lost on her. I had reached her; she had felt my comfort, known my love.
At the doorway, she took me by the hand and led me to her bed.
In that simple gesture, our roles were reversed and it seemed like she mothered me. My heart soared.
We climbed in, pulled up the covers. I whispered her verse. She hummed her hum. Peace in the room.
Then she drifted to sleep to the sound of her mama saying over and over,
“I love you, Rhema.”