Your love is a symphony
All around me, running through me
Your love is a melody
Underneath me, running to me
~Switchfoot, Your Love Is a Song
My friend JoyMama has a darling daughter Joy who is Rhema’s “sister across the way.” Both our girls are window-dancers and are usually up to the same antics. They are the same age, and both have autism and epilepsy issues. Months ago JoyMama sent me a piece about the comorbidity of autism and epilepsy. According to the article, roughly one third of individuals with autism also have seizures.
JoyMama pulled the following quote:
“During development, the brain is trying to set up all these connections,” notes Ann Berg, research professor of biology at Northern Illinois University. “You’ve got these little neurons trying to sing to each other and then this crashing cacophony comes down over them.”
Then JoyMama wrote something that made my eyes smart and gave me goosebumps:
“Blessings on our beautiful girls and their hard-won songs…”
I’ve written about it many times here. Rhema. Her language, her life is a song. Hope calls it “talking with music.” We don’t know or understand the words, but her serenade is ever present. Like a long musical, she intones her heart-thoughts; she sings every emotion. It seems to be a melody for her, for us, for the morning and night, for toilet paper and rain and air and macaroni and blades of grass; she hums to the world.
And when I think about it, it kills me and inspires me that she keeps singing.
To date, Rhema’s epileptic condition has proven untreatable. She must endure several EEGs a year, and for a child with autism and the communication paralysis and anxiety and all the sensory sensitivities that tag along, the EEG hookup can be sheer agony. So it was yesterday, and I’m convinced she fought harder than she ever has.
Can I say? I wish we didn’t have to keep doing this.
For 24 hours a device in her backpack will record every spike and wave, every electrical blast in her brain. Just a few months ago the EEG revealed that the “crashing cacophany” occurs on average 58 times a minute for my girl.
She repeatedly takes my hand and puts it on her head. It’s her way of pleading with me to take those awful leads off her head.
“I’m so sorry, sweet girl. We have to keep it on.”
And this is the face of a brave little soprano opening her mouth,
and singing through the storm her hard-won song.