I have never talked to Rhema about her autism. Our family has talked about autism around her, but for so long I incorrectly assumed that we could not have a conversation, that she would not understand.
The fact that we can now have a conversation about almost anything still blows my mind and makes me want to cry and dance for joy. Sometimes I type the words that she’s spelled in caps. That’s not proper netiquette, I know. Capital letters make words louder. And that’s just fine by me. After 12 years of silence, I hear her loud and clear.
Yesterday we went for a drive and things were not in order in her mind. She became upset in the car and lashed out at me. It was not a pretty moment – for either of us.
We arrived home and she went to her chair where we do RPM, and she cried.
I came over after a while and picked up her stencil board.
“Rhema, why are you crying?”
“I AM SAD.”
“Why are you sad right now?”
“I HAVE A(V)UTISM.”
“What about autism makes you sad, baby?”
“I HAS HIGH EXPECTATIONS.”
“Yes, I know that. You’ve told me before that you have high expectations.”
There was a pause as I searched for words. I didn’t know what to say so I just asked her if she had anything else she wanted to say.
“AUTISM MAKES ME SO MAD.”
“I get that, Rhema. It must be so frustrating sometimes.”
“I HAVE HARD TIME DOING LIFE.”
At that point we put the stencil board down so that I would not cry. For a minute I just needed to try to process it all – the joy that she could finally share these things and the heartache over the words themselves.
“Rhema, I have something to tell you.” And then I kind of laughed. “I think you know this but I write a blog and I’ve been sharing with people about what’s happening with you… how you’re communicating now through pointing to letters and typing. Someone who reads the blog wrote me this: ‘Please tell Rhema I’ve been praying about something last night, and in her wisdom, she just gave me the answer today. Tell her thank you!’ So Rhema… I guess what I’m trying to say is… I know autism can be so hard sometimes… and I know I don’t even know because I’m not you. But I believe God has a good purpose for your life and He can use even what you’re going through now.”
“I HAVE AUTISM SO HIS GLORY WOULD BE REVEALED.”
I thought about the countless times a scenario likes this has played out where she became overwhelmed or upset, when she put fists to her eyes and wept. And she could never express why.
I thought of the years of seizures and hospital stays and the medications with a host of side effects still today poured into her already dysregulated body. And she could never say how she felt.
I thought of the years of pain – when she would repeatedly bite her hands and arms so badly we’d have to ice them and the school nurse recommended we take her to the hospital for her injuries.
I thought of the years of screaming. The many times I’d walk into her room and find the floor covered with clumps of hair she pulled out. She did not have the ability to say, ‘This life hurts!’ or ‘I am sad’ or ‘I am mad.’
I thought of the years she has been treated like a baby or spoken to like a baby because of her outward behaviors and inability to speak. And disregarded and not included as if she did not have a working mind.
And yet, with her words, she says to me that all of this, all of The Hard, is worth it. If it somehow brings glory to God. Every day it’s worth it.
And if she can say that, then Lord help me, so can I.
I can get off the floor. I can lift my head as the tears fall and say,
“Thank you. Thank you. For your glory, God.”