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)