The story I’ll tell… and tell and tell

2015 - Photo taken by Kerrie James

2015 – Photo taken by Kerrie James

I expect that soon Rhema will take over this blog and you will see less of my words and more of hers. And I couldn’t be happier about that!

I do want to share here a bit of her story from my perspective. A couple weeks ago I had the opportunity to speak at my Bible study about Rhema’s amazing journey:

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I am so happy to share a story with you today.

God has entrusted me with two sweet girls and one generous husband. Rhema is age 12 and Hope is 9.

Rhema’s name literally means “word” or “thing said”. Before she was born we chose Romans 10:8,9 as her theme verse, and I’ve recited that Scripture to her every night at bedtime for the past 12 years. “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 that Jesus is Lord and believe in your heart that God raised him from the dead you will be saved.”

At age two Rhema was diagnosed with autism, apraxia and a rare and stubborn seizure disorder. These things robbed her of her speech. A neurologist also informed us that she most likely suffered from aphasia which is an inability to comprehend language, also known as “word deafness.”

I thought it was all a cruel cosmic joke. My child named “word” could not speak or understand a word.

For years we struggled under the weight of Rhema’s diagnoses, challenges and needs. Brandon was in the Army and was away a lot – he was deployed to Iraq three times, with each deployment lasting a year or longer. Caring for our girls fell heavy on my shoulders. And I think I put on a good face, but inside I felt isolated and alone and angry and bitter and heartbroken. Even though I could not see what God was doing I had to make a choice to believe that He was and is faithful.

My daughter’s struggles did not go away – even now she can still have very hard days with overwhelming senses, self-injuring behavior, aggression and seizures. But God was doing a healing work in our family, and in many ways, it had nothing to do with autism.

I had such a longing to have a real conversation with my daughter and for her to be able to  share her thoughts about… anything – her favorite color, why she was upset, or if she hurt, or what she liked. At age 11, standardized tests indicated she had the receptive and expressive language of a 12-month old. But there were little signs that caused me to believe that she understood far more than we thought. We began telling her that we would never give up on helping her communicate better, that one day she would be the storyteller.

In 2015 we took her to WI and TX to learn a teaching method called RPM, Rapid Prompting Method. It involves teaching a student to point to the letters to spell words and sentences on a simple stencil board or letter board. It was a total paradigm shift for us because it meant teaching age appropriate material to Rhema as if she really understood everything. For her, pointing was a challenge because she lacked the motor planning to form her hand into a point. But we came home, and I was determined to keep teaching her using this method.

First, we studied the book of Exodus. Because Rhema, like Moses, needed to find her voice. In the beginning I would read from Exodus and then ask her a question about it, writing down 2 choices and spelling the choices out loud. “Did Pharoah want to kill all the Hebrew boys – B-O-Y-S or girls G-I-R-L-S?” And then I would encourage her to point to a choice.

There was something sweet about studying the Bible that way, letter by deliberate letter we were believing more and more. It was like God was spelling it out for us, inscribing it on our hearts. One night we read Exodus 4 and I sensed that Rhema could really identify with Moses. “O Lord, I have never been eloquent… I am slow of speech and tongue.” The LORD said to Moses, “Who gave man his mouth? Is it not I, the LORD? Now go; I will help you speak and will teach you what to say.” ~Exodus 4:10-12

After our study time I wrote the following:

“I have indeed seen their misery… and I have heard their cry. I know their sorrows.”

We’ve been reading the book of Exodus. Rhema and I. I write that casually, as if it is nothing new. But we sit and I read to her and ask her questions about it, and I believe that she is listening and understanding. Well, that’s never happened here before, and it’s remarkable.

I write out the words God spoke to Moses through the burning bush: I have seen, I have heard, I know.

He tells Moses that He has come down to rescue the people of Israel. He is sending Moses to deliver them from their slavery and oppression. Moses protests, saying, ‘Who am I that I should do this?’ No doubt he is thinking of his inadequacies, his unworthiness, his past failures and fears, his “slow tongue.”

God says, But I will be with you.

I ask her about it, writing out different choices on paper. What did God say to Moses’ objections?

She waits. She lifts her hand and slowly, purposefully points. That beautiful, hard-won point. Her finger presses the words, But I will be with you.

“He will, Rhema,” I whisper. “Always. He will.”

When I cannot, He will.

And if she remembers in the moments when she feels so alone, little girl standing at the window, always on the outside looking in, that she is indeed seen…

And if she believes that when she can’t speak, that she is heard…

And if she trusts that when no one understands her quiet sorrows, that she is known…

by the God who wonderfully made her and whose love for her is indescribably extravagant, measureless, endless…

that is enough, more than enough.

No matter what life brings if she will touch those words, cling to them, hold them close to her heart,

‘But I will be with you’

Then this mama’s heart rests and rejoices.

She has all she’ll ever need.

After a full year of studying together every night, she spelled her first sentence of open communication with me. We’d been doing a lesson on the Lord’s Prayer, and I asked her if she could tell me what she prayed for. I held up the stencil board and she spelled “I H-A-V-E M-Y V-O-I-C-E.” I asked her again because I couldn’t believe it, and she spelled it again. She was telling me that she prayed to have her voice.

It was the most incredible moment of my life because I knew that God had done it. Rhema word. And the moment she spelled that she prayed to have her voice, she had her voice. God answered her prayer then and there.

So that was March 16th of this year. Every day since has been like a dream as she tells us – through pointing – remarkable things. We are getting to know her in new ways for the first time. God is indeed with her mouth and He has given her a beautiful voice. Like Zechariah whose tongue was loosed, she is full of praise and thanksgiving to Him.

This is the kid who makes noise in church, colors with markers in the hymnals, runs laps around the sanctuary and has been known to do the low crawl under the pews from the back of the church to the front. Her favorite part of church is the end where she can race to the fellowship area and drink all the lemonade. To this day she struggles to make it through a church service or Bible study, and yet she has a faith story as God has cultivated a real and genuine relationship with her.

For the children and grandchildren in your lives – speak the God’s Word over them, read it into their ears. It might not seem like they’re listening or they understand or even care. But God speaks their language perfectly, and His love translates.

“Nothing happens to happen

My hope is in the Lord

I have high hopes that I will speak someday

but if not I will speak in my heart

I will say I love the Lord

He gave his life for me so that I might live

He has given me my hearts desire

He is so good to me

He is so much love

I am His”

-Rhema

Once upon a time I would have given anything, really anything, just to hear her thoughts. Now I have pages upon pages of words she had spelled and I have written down – in notebooks and journals, on desks and the floor by my bed, on the ironing board… and of course Facebook. 🙂 Her words fill the rooms of our home and our hearts.

In all the silent years, it seemed like God was silent. But all along He was, and is, speaking.

And now I am the speechless one. There are no words to describe my amazement and joy, my gratitude to Him. Our God is a God with perfect plans. He sees and hears and knows us. He comes down to deliver us. He teaches us what to say. He performs wonders in our midst. And He is with us.

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5 thoughts on “The story I’ll tell… and tell and tell

  1. I read each word of this, slowly and deliberately. I didn’t want to miss a thing. I often read yours and Rhema’s words that way. I am so thrilled that she has an avenue to communicate and that she knows Gods love. My faith story has been wobbly; but I’ve never given up on myself or Gods role in my life. We went to Church as a family for the first time in a long time this past Sunday – and it was good. We moved fairly recently so it was a new Church for us. Our family is unconventional but we felt very welcome. I hope this will be the start of a long and beautiful relationship that my boys and I can have with God and a Church family. Reading your posts definitely helps to inspire me. Your family is a blessing to me. Thank you so much for that!

  2. I am weeping after reading your words. That sounds so dramatic, but weeping accurately describes the mixture of humility, emotion, wonder and awe that I feel. I am in awe that you gave your unborn child a theme verse from the Bible. And that it was that scripture from Romans: “The word is near you.” The significance of that alone is incredible. “It is in your mouth and in your heart.” God said it, and it is true. I am in wonder that you recited that verse to Rhema every night. You said, “Even though I could not see what God was doing, I had to make a choice to believe that He was and is faithful.” Thank you for teaching me. I am amazed that when you began teaching Rhema age appropriate material, it was the Book of Exodus! And her words, Rhema’s words. “The word is in your mouth and in your heart.” Thank you, God, for moving in this way. Thank you for letting us all be a part of this journey. Thank you for this lesson in faith.

  3. I tell your story so often. I want everyone to know what God has done–can do for them, as well. Love, love, love His beautiful mercy on your family and the joy that the world feels as they watch this unfold.

  4. Wow! I’m just AMAZED at what the Lord has done and is doing in your lives. I haven’t visited your blog in over 3 years and am just so incredibly happy for Rhema and for you. This is a miracle, no other way to put it. What an incredible testimony of the power of your faith and the faithfulness of God. Thank you for inspiring me to resume daily scripture reading with my son!

    My son is 11, has autism and is also non-verbal. Since 2013 or so, he knows how to type on his Ipad to communicate his basic needs but his comprehension is still limited due to his cognitive impairment. He can type his name, our phone#, address and other basic facts that he has memorized but the only things he types of his own initiate are short phrases like “I want cookie” (or bike or swimming) etc. I’m wondering if this RPM also promotes comprehension not just speech. What do you think?

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