More Extraordinary

It’s 2:30 am and she’s shrieking and running circles in her room. I sit up in bed, realizing that she’s been doing it for at least a half hour. Got to get there, I think as I groggily rush down the cold hallway, before she goes to the bathroom on the floor.

As I open the door, my eyes take a moment to adjust. But I already know the scene. The light is on. She has ripped all the blankets and sheets off her bed. A page from a coloring book, is torn into tiny pieces like confetti on the floor. She is unclothed, running wildly around the bed, lost, completely lost. And I’m too late. The floor is her toilet bowl.

This is the version of autism that grieves me. The version that still devastates me.

Will it always be like this?

In my disheartened, half-awake state, I clean her and the mess. Put her pajamas back on. Put the sheets back on. Put her back in bed. Turn out the light. I go through the motions, knowing that moments later, she will undo it all. There will be no sleep tonight.

*
It’s 10 am and I’m rushing to her school for an emergency meeting. God, give me the words. Let this be the right decision. I will tell them why we think it’s best for her to be transferred to another school. Such a hard decision. She’s attended this wonderful school for children with autism ever since she was three years old. We are indebted for life.

But it’s time for her to be in a place of great expectations.

I practice what I will say. “We underestimate her so often…”

My mind drifts back to just hours before when I looked upon her and saw nothing but a helplessly, hopelessly brain-injured child, hyper and isolated.

I falter.

And then feel the hand of God steady me. Catch my tear.

“I just know there is so much more. There’s more in there, in her. No, even more than we think! I just know it. We’ve only scratched the surface. She’s shown me there’s more.”

Please dear God, help us find the way to unlock what’s inside.

*
After the meeting I stop in her classroom. I see her before she sees me, and I love her all over again. And then, she tentatively gets up and comes over, laughing all the way. I stoop, and she, the giggling girl, tries to climb me. “Hi,” I say. “Hiiii,” she mimics in a high-pitched voice. It’s the first real greeting in a really long time, and I treasure it.

I doubted you for a moment, my girl. But I’ll never stop believing there’s more extraordinary for you.

 

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us…” Eph. 3:20

run_rhema

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35 thoughts on “More Extraordinary

  1. Jeneil, My heart was led to a song by Kimberly and Alberto Rivera; it’s called “More” and is on their “The Longing” CD. I tried to find a clip of it to send you, but I couldn’t. If you want to e-mail me your address, I’ll send you a CD. 🙂

    Love you,
    K.

  2. You know she is a sentient being. All therapy, special diets, hope and most of all love, slowly awaken her. With these kids, you have to battle low expectations. You know they understand and feel everything. They just can’t tell you. Plus, it is good to shake it up a little. New imput. Poo, in the night, alone is the worst. Been there, done that. Praying for you!

  3. We had wild shrieky-giggles in the early morning today too (though not the rest of it). What phase is the moon in?

    A place of great expectations — that sounds wonderful. SHE is wonderful. A great big hug and “Hiiii” to your sweet girl, and to you too.

  4. Follow your gut – you know what is best. Keep those great expectations for your girl – she will rise to them. Big hugs.

  5. The highs and lows of parenting a child on the spectrum.

    Dev thinks he deserves fresh sheets daily so he’s been up wiggling his worm out and peeing on the bed. I told him lookie here Mister Man this ain’t the Ritz!

    You know what’s best for darling Rhema. If you feel she isn’t being sufficiently challenged then it’s time to move on.

    You know what happens when our kids get bored and it’s not pretty.

    xoxoxxoxox

    Jenn

  6. As an in-home ABA therapist…

    Go you! I applaud you for knowing your child and taking the necessary steps! I am praying for you and all who come in contact with your precious girls! I wish I could give you a great big hug but I guess I’ll have to wait until we’re both “home.” Take care, my Sister. You inspire me.

    – B

    • hi natalie,

      yes, we do have a great school picked out for rhema. we are hoping and praying that we will be able to transition her soon!

  7. Beautiful — you know in your gut what is best for Rhema. And she will rise to the challenge.

    (So sorry about the poo in the night. I was up scrubbing with you, friend.)

  8. That’s the scene of our son’s LKS over and over. It seems to have gotten under control….for the moment.

    We too have a hard meeting for an IEP in 3 days. Hard because we have to face the SSN teacher and tell her we don’t believe she’s a good match for our son. She’s too firm, not flexible, not understanding for the strange combination that comes with LKS.

    Hard because my hubs has to work and I have to find the strength alone…..

  9. You are amazing and strong.
    You know all sides of her
    and love her the whole night long
    You know the best is yet to come

    And in the meantime
    You’ll build her a stage
    And in the meantime
    You’ll feel some rage
    And in the meantime
    You’ll find her place to perform
    You know the best is yet to come

    You just need a little sleep
    You just need to build some stairs
    You just need to get some hugs
    And you’ll find them everywhere.
    xo

  10. I have no idea what you go through on a daily basis, but just reading this little snippet makes me feel for you.

    You sound like a great advocate for your daughter. I hope she blossoms and proves to the world that there really is “so much more” to her.

  11. There is sooo much more that we can see in Rhema. “We walk by faith and not by sight.” It helps to see it sometimes, and sometimes Rhema gives you just that; little bread crumbs of hope that will lead you to the miracle time after time.
    I am praying for you, Neily and the girls. I will pray that this whole transition goes well for you and for Rhema and all the teachers and therapists involved. It’s all in God’s hands.
    P.S. A day has not gone by that Mr. Nylis doesn’t loving ask for Rhema and “Dope”. I think he’s in love 🙂

  12. There is sooo much more than we can see in Rhema. “We walk by faith and not by sight.” It helps to see it sometimes, and sometimes Rhema gives you just that; little bread crumbs of hope that will lead you to the miracle time after time.
    I am praying for you, Neily and the girls. I will pray that this whole transition goes well for you and for Rhema and all the teachers and therapists involved. It’s all in God’s hands.
    P.S. A day has not gone by that Mr. Nylis doesn’t loving ask for Rhema and “Dope”. I think he’s in love 🙂

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