Autism, epilepsy and song

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

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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…”

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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.”


This is the face of autism and epilepsy.

And this is the face of a brave little soprano opening her mouth,

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and singing through the storm her hard-won song.

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23 thoughts on “Autism, epilepsy and song

  1. Jeneil – just adore you and your brave girl and your family for sharing your story of autism and epilepsy. It needs to be heard and you do it with such grace. I’m sorry this is just so hard for everyone. xo

  2. and it’s the face of a beautiful girl that teaches and touches those in her sphere and those that have never met her, but return again and again to read the lyrics of her song poured out from her mama’s fingertips. I’m sorry she has to keep going through this…that you all have to keep going through this…praying often for your family. Keep singing, Rhema…

  3. I don’t think anything has ever made me feel so helpless and utterly exhausted, mentally and emotionally, as enduring my son’s EEG hookup. I wish Rhema did not have to experience it so frequently. I hope the next 24 hours pass as quickly as possible for you all, and bring you some answers or remedies. Sing on!

  4. Oh, that picture breaks my heart Jeneil. 58 times a minute is so staggering, and yet she continues to sing. Her spirit and yours are something to behold. Love you. Wish it wasn’t so hard.

  5. “My life flows on in endless song
    Above earth’s lamentations
    I catch the sweet though far-off hymn
    That hails a new creation.

    No storm can shake my inmost calm
    While to that rock I’m clinging
    Since Love is Lord of heaven and earth
    How can I keep from singing?”

    This is the song that I hear when I think of singing through tears. It will now have an extra layer when I sing it — a prayer for Rhema and her family.

    What a beautiful post, Jeneil.

  6. We will be heading to Charlotte next month for a 24-72 hr. EEG. I’m dreading it, all the while anxious to have it done. To see if there are slivers of answers to the mystery of our girl. I can’t fathom that O will leave the leads alone or that there will be a single moment she will be comfortable…

    The picture of Rhema (“face of autism and epilepsy”) breaks my heart. Yet, she sings. As does my girl.

    Mysteries with melody.

  7. So sorry you both have to go through it so often, but so inspired by how well both of you handle it. Love that she keeps singing through it all, and hope that the time goes quickly.

  8. I was going to email you but I might as well say it here – I dreamt of Rhema two nights ago, that we were at a pizza parlor of all things, and while you ate with Hope at our table, I watched Rhema and walked (and ran!) around the restaurant with her. It was such a vivid dream; I truly felt her presence even though I have not been with her before. She is an angel, and I’m so sorry for her suffering with the EEG experience. I love her and I love you!

  9. Reading this made me want to scoop her up in a tight hug! I hope that one day the tests will yield information/help that makes them all worth it.

  10. As always, you leave me breathless. We’ve endured the EEG twice – two days that I’ll never forget. I hope someday soon to meet sweet Rhema and hear her beautiful song.

  11. Oh, honey.
    58 times a minute? What an amazing girl she is, bravely intoning her way through life. What a brave and wonderful mama she has.
    Love you.

  12. Very sweet story about a beautiful and brave little girl. Your story reminds me of one of my very favorite poems of all time! “Real Hero” reminds me so much of your little girl, and my own son who has an ASD diagnosis:

    REAL HERO
    Anyone can slay a dragon, he told me, but try waking up every morning & loving the world all over again. That’s what takes a real hero.
    ~Story People

    I know you give her loads of hugs and kisses every day, know that you are in our thoughts and prayers. Take care!

  13. God has huge plans for dear Rhema… sweet girl, I wish I could take that thing off all the way from Texas! Praying for y’all, so thankful for your sharing not only your words but pictures. Big hugs for you, mama. :-)

  14. I am amazed she kept everything on! We just had another of Nik’s many 24hr EEG’s recently. Had to go back a second time because he ripped every last electrode off his head after just a few hours. He is a good sport about most things…except this. I pray Rhema’s EEG shows some improvement from the frequency of activity. Been thinking of you lots lately. Xoxo

  15. 58 times per minute?????!!!!!!!!!!!!!!!!!! oh my she is indeed brave-just likeyou jeniel- you are brave enough to share this piece…praying for you guys….

  16. Pingback: Heartsong « Autism In a Word

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