On Relearning

The first year of Rhema’s autism and epilepsy diagnosis I felt gripped by an ever-present, distracting sadness. I no longer feel such a sense of loss. But lately, as things have been more difficult for my girl, I feel the old grief catching me off guard and threatening to spill from my eyes. (And I’m not a crier. It’s an emotional time in general around here. Maybe that’s it.)

“Does she count anymore? She used to count.” Brandon’s only been home a few weeks. He missed a year of her life. Apparently there were things she could do a year ago that she is no longer doing.

I remember well the day she started “counting.” Hope was only weeks old, and I had my six-week postpartum appointment. My mother stayed with Rhema in the waiting room, and when I came out my mother could barely contain herself. “You’re not going to believe this. She counted for me. She counted!!!!” And then Rhema counted for me to five with the perfect voice and intonation of Dora the Explorer. Nevermind that I knew exactly which Dora episode she was mimicking (and I thought, note to self: find a Dora video where she counts to 12 or 20)… my Rhema was saying her numbers! I was relieved. I felt, I believed that everything would be alright. She could say numbers. Surely she would be talking up a storm soon.

“She used to count,” Brandon repeats emphatically. “To 5, at least. Maybe 10.”

I don’t tell him that I have not heard Rhema say any numbers in years. That somewhere along the way we stopped working on it constantly, and she lost it. I don’t tell him that once upon a time she would sing a little of Twinkle, Twinkle Little Star – I have the video to prove it – but no longer. I don’t speak of the impossible exhaustion I feel in knowing that every single darn thing she might learn has to be reinforced and practiced every single day or it might go away.

And what breaks my heart the most… what I don’t want to say out loud… is that she does not say the words in her verse anymore. That day was one of the happiest of my life, they were the sweetest sounds I’ve ever heard. It’s the moment on which I hang my hope. And I don’t want to take anything away from it, by facing the fact that, now, somehow the words are lost.

I think I know some of what it’s like to lose what you know, to lose you. When you’ve fallen a thousand steps back and no longer recognize yourself. When confusion, despair and shame have their way with you until there’s nothing left but a numb soul. You stumble in the darkness and cannot recall the words to get out.

In desperation I whisper, “God, teach me again! Speak to my heart! Give me the words that will bring new life.” And He, the Speech Maker, surrounds with songs of deliverance.

And I find that I never really lost it. The Word was always there. As I learn to speak the words again, in the midst of waiting-on-answer prayers and unchanging circumstances, I know them better now. They were once in my head; now experience has painstakingly etched them on my heart. The Word is sharp, true, alive… able to penetrate soul and spirit, able to save. Forever stands.

So we’ll start over. Again I’ll teach her, and we will learn. Word for word.

I’ll sing them over her until she finds her voice strong once more.

.

“Rhema, The word is near you; it is in your mouth and in your heart, that is, the word of faith we are proclaiming: That if you confess with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved.” (Rom. 10:8,9)

 

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21 thoughts on “On Relearning

  1. you are a gift, jeneil. to your beautiful rhema and to each and every one of us who you touch so deeply with your words and your spirit. a gift. i’m so, so sorry for the pain and i’m so, so grateful for the hope.

  2. Andy actually confessed to me recently that he secretly cried (which just doesn’t happen too often) over some of Jack’s recent losses.

    I think realizing that something you had, that you worked so hard to grasp, has evaporated just like that, is one of the cruelest components of the autism we deal with. It’s hard to keep moving forward .. it really, really is.

    But just like you, we do. Love keeps us moving even when we are numb. Please know that you are not alone in this experience. We can link arms and soldier on together, right?

  3. Oh, my sister.

    Just as you (we) never really lose the Word, I believe too that these things our daughters once did are not gone. They may be temporarily obscured from us, but some imprint of them remains — and they will burst forth again, when we least expect them.

    Joy stopped chiming in on our bedtime songs for over a year. We kept singing. The chime-ins finally returned, including an echo of her own name that she hadn’t been doing previously.

    I will be waiting to rejoice with you when you tell us all that Rhema is speaking the words from her verse once again!

  4. The loss of what you thought your child would be when diagnosed and then again when skills come and go with no rhyme or reason is frustrating, maddening and heartbreaking.

    But the hope in your heart and your faith are amazing and inspiring.

    I am blessed to know you.

    “Return to your fortress, O prisoners of hope; even now I announce that I will restore twice as much to you.”
    Zechariah 9:12

    You can get off the floor now.

    xoxo

    Jersey

  5. Thank you Jeneil. I’m not sure what else to write. I wanted to at least thank you, though. After reading this post…and the responses, I can barely type. Tears are a form of sign language, I believe…and I’m grateful God is fluent. There are times when no words are required, don’t you think?

  6. I’ll be right with JoyMama waiting to rejoice when the words resurface.

    With love,

    (The verse from Jersey is perfect.)

  7. It is so exhausting, this rollercoaster of grief and hope.
    One psychologist told me that my son’s information gets disorganized in his ‘mental filing system’, so he can’t always retrieve it but that it is in there…that seems more plausible to me than that our kids are just losing skills randomly. Maybe the repetition helps to organize their pathways to the information and makes those pathways stronger, but then their effort to constantly process sensory information derails them and sends them down another pathway for awhile.
    I hope the theories of an overtired mom aren’t too annoying.
    Hugs.

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  9. gosh. crying for you…well for both of us reading this post because so much of it is how I feel. The part about losing myself and wanting the old me back. The joyful, hopeful me. I am working on it and God’s promises are always there. I think this trying time is to teach me to believe. To truly test my faith…

    ((HUGS))

  10. a lesson I need to re-learn…

    To lose what we know; to lose ourselves.

    Funny how that fits with my heart today. I must keep practicing my faith. I must.

    blessed Thanksgiving, sister. May your house and heart be filled with laughter, love, and joy of all heaven.

    peace~elaine

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