Sayin’ it

“I want you to know, brothers, that what has happened to me has really served to advance the gospel…”

We’ve been reading Paul’s letter to the Philippians in my Bible Study.

Paul was specially called by God to preach the gospel. And yet he constantly found himself imprisoned; he spent roughly six years of his ministry as a prisoner. He was put to death in Rome after his last incarceration. Why would God do this, allow such confinement of the man he appointed to proclaim His Word?

“This is my gospel, for which I am suffering even to the point of being chained like a criminal. But God’s word is not chained.” (2 Tim 2:8)

When Rhema was born we, like most new parents, sent out a birth announcement. Brandon explained the meaning of her name:

Rhema (pronounced ray-mah) is the Greek word God uses to describe the living, soul-stirring communication He uses to reveal Truth to individuals.  It is the “rhema” that draws each person to salvation.  Romans 10:8-9, 17 states, “The word [rhema] is near you; it is in your mouth and in your heart, that is, the word [rhema] 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…consequently, faith comes by hearing the message, and the message is heard through the word [rhema] of Christ.”  It is our prayer that Rhema will be used as God’s instrument to communicate the Truth of God’s Word to many souls who need to hear the message of hope and forgiveness of sin through Jesus Christ.

We gave her a middle name after her great-great-grandmother who spent many years praying for all of her children and grandchildren to come to faith. We hoped Rhema would be a bold witness to everyone around her just as her great-great-grandmother had been.

It’s funny looking back. We had such big plans for her (we still do). Before she was born we’d already envisioned who she would be and how things would go. Our purposes were good, just what we thought God would want our purposes for her to be. When she was diagnosed with autism and a seizure condition that assaults the speech and language centers of the brain – we felt duped, offended, disappointed that God would allow our good dreams to be crushed.

Over the years I’ve come to understand that God’s dreams for my children are far bigger than my own. Indeed I’ve seen that “what has happened to her really has served to advance the gospel.” Some have encouraged me, saying that I speak for her through this blog. Yes, I record the stories and share what God is teaching me through it all. But I believe that she speaks (and will speak in whatever form that may be – writing, pictures, etc.) for herself. God’s word is not chained by prison walls or epilepsy or autism.

Years ago I also saw myself serving and ministering in very specific ways. Since then my own failures have left me constantly battling feelings of guilt, unworthiness, and the whispers in my head that I’ve no right to speak. But I am strengthened by this fact: if God can spread His Word across continents and decades through a jailbird and speak Word through a girl without words, then He can still speak through bumbling me.

Even now Paul’s joy and courage embolden me, and Rhema always inspires.  So I say (if you are still reading at this point):

Jesus loves you. He takes away the pain of sin and death and gives Life. If you will trust him, He will meet you and say, “I have loved you with an everlasting love. I have swept away your sins like a cloud, I have scattered your offenses like the morning mist. Oh, return to me, for I have paid the price to set you free.” I am so thankful for grace, that we don’t have to be eloquent or deserving or even good to gain Christ, we just have to believe.

That’s gospel truth.

Getting to know her

“I am autistic but that is not who I am. Take time to know me, before you judge me. I am cute, funny and like to have fun.”
~ Carly Fleischmann, age 14

.

Over the holiday break, we watched a 20/20 segment that my father-in-law recorded about Carly Fleischmann, the nonverbal teen with autism who communicates through typing. I have always been fascinated and inspired by her story. Until the age of eleven, she seemed locked away in her own silent world and was considered severely impaired. But then she began typing, and as the words pored out, her family discovered a brilliant, expressive, feeling person they had never met. (Carly now has a blog and is writing a book.)

In an interview, Carly’s father said something that hit me like a ton of bricks. He said that when they realized all that was inside her, they were horrified that for most of her life they had spoken in front of her as if she didn’t exist.

When you live with someone who does not seem to understand your words and does not initiate interactions or voluntarily speak, it’s easy to forget that they’re… there.

But Rhema is always there. We try to be aware of where she is and what she is doing at all times. We talk about her in her presence – with teachers, therapists and friends. We talk around her – in the car, in public, at home – constant conversation is buzzing among the other members of the family. We talk over her (when she’s humming). We talk to her, but it’s a one-sided conversation and often involves directions to do or not do something.

So it is. My girl is with us, but not.

We make efforts to draw her in, but we get used to her occupying the periphery. And she seems quite content there.

A week ago we were loading the van with last-minute items for our drive home from Michigan, and something in Rhema’s ever-present sing-songy tune caught my ear.

It sounded like:

“Ud-byyeee!  Ud-byyeee! Ud-byyeee!”

She was walking around the house, not looking at anyone or anything in particular, singing her song.

I looked at my mother-in-law,

“She’s saying good-bye, isn’t she?”

She nodded, “Yes, she is.”

I watched her as she roamed the house, and I marveled. She completely understood everything. No one had bothered to sit her down and explain that Christmas vacation was over and that we were leaving Grandma and Grandpa’s house. Although she seemed oblivious, I’m sure she noticed us packing suitcases. But even beyond that, I’m sure she heard us discussing our travel plans and she knew that we were leaving. And she was saying good-bye… in her own sweet perfect way.

So often we autism parents say, ‘I know he/she understands so much more than they are able to show us.’ When the proof of that statement is revealed I am sometimes – I mean, always – left in mouth-hanging-open awe.

She really is with us. Right here with us.

And then my heart wilted. How many times has she been telling us something through one of her “songs” and I totally missed it? How many times have we failed to hear her… when all the while she’s been hearing us?

R, thank you for being patient with us. Forgive us when we overlook you, disregard you, underestimate you, under-believe in you. You are so smart and thoughtful, and we are loving getting to know you. You have so much to share with us. We see you, baby girl. And we’re listening.

crazy beautiful wonder

“I want to trip inside your

head,

spend the day there… 

to hear the things you

haven’t said

 

and see what you might see…

the songs are in your eyes

I see them when you smile…”

~U2

Her Language

From the moment she wakes, she is making sounds. High and low, up and down, soft and loud and soft. She sings and hums, she babbles repetitively; sounds that cannot accurately be represented through typed letters. It is, as one woman put, incessant.

During the day, it becomes background music. At bedtime, it can be annoying. But I am most aware of it when we are in public. Once, I was told that she was “distracting the other children.” But there is no stopping it. There is no silencing her.

Her vocalizations were once hurtful, indicating an altered brain, and the fact that I, her own mother, had no idea if she was speaking words I should recognize or if she was just making noise.

In the past, I clumped all of her “noises” in the category of vocal stimming. Recently, I’ve started seeing it as one of her languages, her primary language. (Hope was actually the first one to help me see it as a language – she used to mimic Rhema’s sounds back to her. And then I watched Amanda Baggs‘ profound video, and it forever changed my thinking about communication.)

It occurred to me that while it is so important to me that she learn to speak and understand my language (and I am so appreciative when she does), it’s just as important that I learn hers. So I’ve been practicing when she’s asleep or at school, trying to say things the way she says them and when she says them. When I sing a string to her, she doesn’t always look me in the eye, but she grins a soft grin. Sometimes she repeats it back to me. Sometimes she just giggles.

As I wrote in Song Without Words, I realize that I don’t have to know the meanings of the words in her language. Often she is prompted to repeat words in my language whether she understands the meaning or not. The hope is that she will understand the meaning in time. Perhaps I will understand the meaning of her words in time.

Sometimes she is so busy talking in her language, she does not listen well… to me or to her teachers. She has to be shushed to hear what we are saying. Sometimes I am so busy talking in my language, I do not listen well. I have to be shushed to hear what she is saying.

But when I hear it, really hear it, I feel like the most blessed mother of all, because her lovely chorus fills my days.

Here’s a sample of my daughter’s beautiful song, her voice, her language. It’s called “I Want Rice.”

“My language is not about designing words or even visual symbols for people to interpret. It is about being in a constant conversation with every aspect of my environment, reacting physically to all parts of my surroundings.” ~ Amanda Baggs

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

Nothing

Rhema was *great* during her EEG. It was unbelievably smooth, and I know that someone must have thought of us and prayed for us! I will write about her results soon.

Rhema’s doctor is one of the top pediatric neurologists in Boston. On Monday, before he arrived, a team of medical students and residents came to speak with us. First, they asked lots of questions of Brandon and me, getting Rhema’s history from our perspective. (Rhema’s seizure disorder – Landau Kleffner syndrome – is rare. You just don’t see a case like hers everyday.)

Then the resident examined Rhema while she sat in bed. These examinations are never easy – even something as simple as getting a temp or blood pressure on her is difficult because she gets scared. She wriggles, squirms and fights. The resident did manage the standard checks – he looked in her eyes with a flashlight, tested her reflexes. Some tests were unsuccessful because they required following directions and understanding the directions to begin with, such as ‘raise your arms,’ and ‘deep breath in and out.’

The resident stooped down to look her in the eyes (she was sitting on the bed). He raised two fingers and asked, “How many fingers am I holding up?”

There was silence as Rhema looked all around, anywhere but the doctor’s face.

“How many fingers am I holding up?”

He attempted to get her to look, waving his fingers in front of her, “How many fingers am I holding up?”

No response.

Switching gears, he asked, “What’s your name?”

Silence. Crickets chirped.

“What’s your name?? What’s your name?”

I could feel the heat in my face. I was starting to get angry, angry at him, angry at the whole situation. Hadn’t this guy read her file? Didn’t he know her medical history? Surely the word NONVERBAL was written somewhere in magic marker on her records, across her forehead? Wasn’t it painfully obvious by now?

The doctor spontaneously ripped off his watch and dangled it in front of her. “What’s this? Rhema. What’s this?”

Finally, I interjected. Surprisingly, my voice was soft:

“She’s not going to answer you.”

He slowly turned to us, “What does she answer?”

I know he wanted to know for education’s sake, for the benefit of the other medical professionals in the room.

Brandon and I looked at each other. A flicker of deep longing and… loss… passed between us. Something I believe no one can understand unless, they, like us, would move heaven and earth, spend their last penny, and chop off their limbs…
just to have one real, meaningful conversation with their child.

It is what we miss most of all.

What does she answer?

His pen was ready to take notes on a blank page.

“No… nothing.” I stuttered, as if realizing it for the first time.

He waited. He seemed to want us to scroll our memories, to come up with something. But we didn’t have to try to remember. Surely we would remember. But there was,

“Nothing.”

Later, after everyone had left and it was just Rhema and me, I nearly jumped off the sleeper chair when I remembered something.

Rhema is nothing!

Seriously. Rhema is nothing!!!

I have been studying her name’s meaning for a long time. Many who read this blog know that her name is translated from the Greek as “the spoken word” (as opposed to logos, which is “the written word”).

But there’s another, lesser known meaning for rhema, and that is “no word” or “no thing.” Specifically, in Luke 1:37, when the angel is telling Mary that she will birth the Son of God, he says,

“For with God nothing shall be impossible.”

‘Nothing’ in the original translation is ‘rhema.’

She is the embodiment of that verse. I look at her, and I already see God doing the impossible. There are a LOT of discouraging times, but I tell you, there’s no doubt in my mind God will continue doing the impossible in her.

In that hospital room, and even now, I am prompted to open my fists and give all of my nothing to Him… “to the God who gives life to the dead and creates something out of nothing.” (Rom. 4:17) 

I give my rhema to the One, who with a Word, framed the worlds from nothingness and sustains it even now. (Heb. 1)

 

Write our story, Lord, in your words. Take our nothing, and fill our blank pages with all of the impossibles You have made possible.

 

*My friend Lianna sent a link to a beautiful post about nothingness. Click here.

Song Without Words

She “sings”. She scats. She hums.

Almost all the time.

Mostly babble. Recognizable tunes here and there.

She sings when she’s happy and when she’s distressed. She sings during her therapy and has to be shushed. She sings in the middle of the night. “I call to remembrance my song in the night…” Ps. 77: 6.

I know. I can hear the experts. It’s a vocal stim. Meaningless, autistic babble. To me, it’s the gentle music of a sweet voice (well, o.k. not so much in the middle of the night).  But there was a time when she was completely silent. Now I like to hear the song in her heart.

I only wish I knew the words to her songs.

My father is an old Georgia preacher. In the small church he grew up in, the old folks had a tradition called “lining a hymn.” I believe the practice was carried over from slavery days and was intended to serve those who could not read.

Sitting in the old country church of hard wooden pews and no air-conditioning, I can still hear the moving, harmonious sounds of worship in my ears (and the flapping of cardboard fans from the local funeral home). An elderly deacon would stand and sing, in a deep tenor, one or two lines at a time of a hymn or Negro spiritual. Pass me not, O Gentle Savior… Hear my humble cry… The church members would collectively sing the melody back, line for line. Then the deacon would hum. Whatever he intoned, they intoned back.

There was repetition and call-and-response. No piano. No drums.  The raised voices and the stomping feet made the music. For long periods of time, there were no words. Only deep, heartfelt humming and moaning offered up to a sovereign God. A sacrifice of praise. With all the meaning in the world.

Sometimes I think she is lining a hymn for me. (I need not know the words.) Reminding me, prompting me to sing.

Because I had almost lost my song.

But when I sing, my anthem comes back to me: Behold, God is my salvation; I will trust, and not be afraid: for the LORD is my strength and my song; he also is become my salvation. Isaiah 12:2

A nonverbal girl. A simple song. An amazing God.

Missing What I’m Missing

Hope wants to be a princess.

It sort of caught me off guard.

She recently began playing at a friend’s house with two 4-year old girls. The older girls are always creating some magical adventure, and Hope drinks them in, eagerly following them, trying to be just like them. So I should not have been surprised when my almost-2-year-old started telling me about her “castle.”

I was a tomboy as a child, only interested in kickball, collecting frogs and skateboarding. And Rhema seems completely unaware of such things – she’s been too busy learning how to sit and attend and point and imitate and learn her letters, numbers, shapes and colors. No time to explore princesses, fairies, moats and such.

So I bought Hope a tiara. Oh, the joy on her face when I put on her tiara as she stood in the mirror. Her hands flew to cover her open mouth as she squealed and exclaimed, “Princess Hope!”

Daily she dazzles and amazes me with her imagination and intelligence. She never stops talking. From the time she wakes up to when she goes to sleep, she offers a running commentary on all that she sees, hears and thinks. I spend all of my days laughing – now I know. Now I know why they say kids say the darndest things.

As I experience this new kind of motherhood with Hope, my thoughts always trail away to my Rhema, usually at her special needs school. I think of my precious firstborn, so severely affected by autism. I wish she could share a real friendship with another child. With all my heart, I want her to know the blessing of deep, rich, meaningful relationships.

How I long for her to tell me something, anything about herself. What’s your favorite color? Do you dream at night? Why do you dance in the window? The weeks, months and years of silence go by and I feel like I missed something – I didn’t get to fully experience you experiencing the world. I wish I could hear the clever things you would say. I know you, but there’s so much more I wish I knew.

When I look at my girls, I know that God has blessed me beyond measure. They are happy and healthy (relatively speaking), and they are here.

But there are days when I feel, heavy on my heart, a sense of loss.

Sometimes

I can’t help

missing what I’m missing.

I will not deny that.

 

But I will give it to God and still trust Him to do something

extraordinary…

Oh Say Can You Say

To all of you who have ever said a prayer for Rhema, THANK YOU. I wanted to share this video clip with you. In Rhema’s ABA therapy at home, her therapist (wonderful!) has been trying to get her to say something – anything – before we swing her in a blanket. After a couple of months, Rhema has finally started to spontaneously say “1-2-3-Go!” before we swing her in the blanket!

I cannot put into words what it is like to hear my daughter’s speaking voice. She is four years old, and it is as if I am hearing her voice for the first time. It is a new, strange and beautiful sound in my ears.

Such a blessing.

Hope.  I have it again… in abundance.

 

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