You go

“You are my hiding place; you will protect me from trouble and surround me with songs of deliverance.”
~Psalm 32:7

She hummed quietly as I spoke. No indication at all that she heard or understood. By now I have learned from her: when the tongue is bound and eyes don’t seem to see and ears don’t seem to her, love translates.

And words meant for her were just as much for me. A challenge to leave a comfort zone, to boldly persevere and run after what I believe is true and right and good no matter the cost.

“Darling Daughter, I know that home is your safe place. And I know this world – with all its sights and sounds and demands and unpredictability – is so overwhelming for you, more than I can ever understand. I see your fear as you cover your face with your arm whenever we are in public. It’s hard for you to even walk on your own. I wish I could shield you from it all. I wish I could let you stay in your safe place.

But baby, we must go find the key. Your father and I would go to the ends of the earth for you to taste and hold every good thing. I believe there’s a chance for us, for you, to learn how to share what’s inside. Let’s reach for it!

A secret, little one. You have a hiding place wherever you go. In the airport, at school, on the playground, though a seizure, in your pain, in the unknown. He is sure and strong. He is comfort like your blue blanket, you can shelter under his wings. He is a communing hideaway: “O my dove, in the clefts of the rock, in the crannies of the cliff, let me see your face, let me hear your voice, for your voice is sweet, and your face is lovely.” (Song of Songs 2:14).

So open your heart, dear one, and let it be filled with songs of deliverance. Songs of how the weak are strong and the old become new. Songs of beauty in the broken. And Christ our joy and strength.

Open your mouth and whisper your sweet ‘yeah.’

Open your ears – every day and always, we are all silently-at-the-top-of-our-lungs cheering for you.

Open your hands, my girl, to all that is waiting for you.

gogirl

I promise you will never walk alone.”

Hopeful enough

“It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks, to go forward with a great desire forever beating at the door of our hearts as we travel toward our distant goal.” 
~Helen Keller

A video from 1930 of Anne Sullivan and Helen Keller demonstrating how Helen learned her first word has become a daily inspiration. Anne explains how a certain hand position helped Helen. Helen would put her thumb on Anne’s throat, her index finger on Anne’s lips and her 2nd finger on Anne’s nose. In so doing, Helen could feel the vibrations of spoken words.

I’ve watched it a hundred times and wiped a hundred tears and it never fails to inspire me to keep believing.

To have the courage to try.

To never give up.

To keep praying that God will show us creative ways to help Rhema speak, in whatever way she will.

Unexpectedly a slot opened up at Soma’s RPM camp in Austin, Texas. The opportunity for Soma to work with Rhema and for me to observe and learn from her is on the level of me being gifted a thousand cupcakes. A dream come true. (Smile).

But I did not think we could possibly go.

I laughed and said to Brandon: “I mean, of course we can’t go. That would be… like… crazy. We just went to an RPM camp in Green Bay a few months ago. And after our last experience, we’d be insane in the membrane to set foot near an airport ever again. And you can’t take the time off work. And work is super busy for me. And you know. Money doesn’t grow on trees-”

Brandon didn’t miss a beat. “I think, if you think Rhema needs this, then we should do it.”

I almost tripped myself running for my computer to book flights for the girls and me.

(I love my husband. I love that he never hesitates to sacrifice for his girls. Time and again he goes to great lengths to make sure Rhema has everything she could possibly need.)

Next week, Lord willing, we’ll make our way to Texas for more RPM training.

It won’t be easy – the travel, the expenses, the hard work and emotions, did I mention the travel?

But if it means she’s one step, one word, closer to finding her voice… We’re just that crazy enough, brave enough, hopeful enough.

And it’s so worth it.

Will you pray with us yet again?

Hidden

When Rhema colors – and she colors a lot – her fingers, face and clothes display her work. The paper looks like scribbles of blues, purples, reds and black.

I’ve learned to look closely, the moment her pen touches the paper. In so doing I’ve discovered a prize. She freely writes letters, numbers, mom, dad, her name, Hope, the alphabet… and hearts. She draws hearts (!). Some of the letters are embellished with circles on the end and extra swirls. Some letters find the edge of a box she’s drawn, others are in the center. She writes each letter quickly and then scribbles over it. You’d never realize it when looking at the finished product, but there are words. Hidden words on the page.

The first time she wrote her name – it wasn’t just her name, it was a work of art:

rhema_writes_name

Rhema copies her name for the first name.

Isn’t that just like our kids? There’s so much to see and hear and discover beneath their swirling colors and sharp patterns, the seemingly odd choices and even difficult behavior. We get caught up with the dealing, the just-making-it-through-the-day.

When right there, right before our eyes, is treasure.

Don’t forget to look.

Describing Rhema to a group of college students I once said:

She does not often look up. She may cover her face if you speak to her. She may not seem to hear you or understand what you are saying. She rocks and hums. She squeezes her eyes shut. She shrieks and giggles. She does not speak. She rarely shows emotion on her face. She has no super-talent that we know of – she’s a Special Olympics gymnastics dropout. She has really good days and really not good days. She’s predictably unpredictable. She is often overlooked, occupying the periphery. She is severely affected by autism and a stubborn seizure disorder. She needs help with every part of her day. She is God’s workmanship, fearfully and wonderfully made.

You really should know her. She’s amazing, she’s beautiful, she’s gentle and smart.

How do you get to know her? Say hello anyway. Come near and catch her soft smile. Hear her sweet song. She has this way of loving, of showing you things you’d never expect to see.

color

M O M

I sit quietly with Rhema in a broken recliner. She used to rock in it, back and forth and back back back, until it flipped over and knocked a hole right through the wall. Now the chair leans to the side like a drunk man and stuffing spills out of it with every rock.

It’s been a hard night. Sometimes a frustrated body leads to bursts of aggression. We sit, after the storm, comfortable in our silence. Her hand guides mine over paper. She wants me to write something. I don’t know what, so I write her name because I love her special name and I’ll not ever grow tired of seeing her write her name. She scribbles over the letters.

“Now write your last name.”

This is something new she’s shown us (at home, at least). One afternoon Dana wrote “Rhema”, and then Rhema wrote her last name as if it were no big, incredible, mama’s-whooping-and-happy-dancing thing at all. Once upon a time her academic goals included learning to use a stamp with her name on it because learning to write seemed out of reach for her.

Dana saved that paper for me so I can pull it out and smile and I’ll never throw it away.

This night she understands exactly what I’m asking. She writes her last name again. No copying, no tracing. Remarkable accomplishment, years of hard work in letters on a crinkled piece of paper. All things are possible.

Then she writes M O M.

My heart stills and tears fill my eyes.

I remember the days of extra speech therapy on weekends. I’d walk into the office at the end of the session and her therapist would say, “Rhema, where’s Mom?” She’d lean close to Rhema and try to get eye contact and urge her to look in my direction. “Where’s Mom?” I’d smile and wave my hand in a goofy way. Me. Over here. I’m the mother. Rhema never looked. She failed the find-your-mother test every time. Although I’m pretty sure she chose not to acknowledge the question because she was insulted by it. Of course I know where my mother is. To this day, she does not call me by name. She can be prompted for some verbal approximation of “Mom”, but she’s never called to me.

Her teachers have been teaching her to write “Mom”, “Dad”, and “Hope” for quite a long while. In the past she’s worked on a picture ID program where she points to pictures of us when prompted. But I was not sure that she really associated those 3 letters with me.

She does. She does. Of course.

And on a hard night she knows how to bless my heart and communicate love.

For the first time in eleven years I truly feel named by my girl.

So honored, so proud, so very grateful to be M O M.

Hers.

snapshots

Photo booth, 2010

“…I’d never forget you—never.
Look, I’ve written your names on the palms of my hands.”
~Isaiah 49:16, The Message

“…I have called you by your name. You are mine.”
~Isaiah 43:1

Letters from my daughter’s therapists

I recently read a piece entitled “To My Son’s Autism Therapists.” I can relate well to the writer’s words: she wants to convey to her son’s therapists how very personal their work is to her. How day and night she grapples with worry, fear, exhaustion and hope… and much of that hope lies within their hands.

I gather that the writer’s child is young. I want to tell her, “Hold on! If your experience is anything like ours, your child will lead you to discover a special class of people you did not know existed. You will find teachers and therapists who care so much and teach so well that your son’s gains, challenges and well-being become deeply personal to them. You will find people whose compassion, commitment, creativity, and belief in your child’s ability to excel never fails.”

One mom wrote a letter to her son’s therapists. This mom (as in me) has cherished letters written by therapists and teachers to us. Honestly, there was a time I did not know how a child who lacked language and social skills and needed one-on-one support with every part of her day could have rich, meaningful relationships. But now I know: she is a gift to others, and her teachers have shown me that again and again. She is loved. I am very grateful that my girl is surrounded by people who not only teach her, but treasure her, just as she is.

A sample:

From A-

Dear Rhema, Over the past four years I have spent a lot of time learning, playing and laughing with you. You have come so far, I am so proud of you! I am so grateful for all of the joy you have given me. I know that with all of the wonderful memories we have made together, I will absolutely never forget you. Keep up the incredible work, Rhema girl.

From S-

As you know, Rhema and I love to color together at school every day. She’ll pull my hand in and have me write words for her to copy. I do everything from mom, dad, Hope, and more, but sometimes I write her teachers names (including my own). The other day during one of our coloring sessions, she scribbled [my name] across one of her papers, and it didn’t even matter that the letters were in a different order. …Rhema and I, we just connect and she is so important to me. I just wanted to share this with you because it meant the world to me that she wrote it on her own and I feel unbelievably lucky to get to work with her every day.

From A. M.-

It is hard to find an appropriate time to say it with the rush that is the morning and afternoon drop off/pick up routine, but I am so proud of your Rhema every day. I see her eyes get wide with understanding, I hear her try new words, and watch as she follows a new direction for the first time with the same accuracy as if she had done it a million times before. I can’t believe how much she has grown these last few years and I am so thankful to be a part of her learning and growing. Thank you.

From H-

Whenever I am asked why I love being an OT I always talk about teaching Rhema to write her name. I keep the letters at my desk to remind myself why I do what I do and how rewarding and lucky I am to get to work with these kids. Everyday it reminds me to do my best and that little miracles happen everyday. Thank you for letting me be a small part of your children’s lives. They are both amazing little girls who are going to have positive influences in many lives. They already have both taught me so much!

From C-

Rhema was taking a break at her desk, and I was tearing pages out of a coloring book for her to color one by one. I handed her a word search which she instantly scribbled all over and held up to give back to me. But then, something caught her eye and she began to trace letters.

When she handed me back the paper, ready for a new one, I saw that she had somehow, in the middle of the word search and among the scribbles and scrambled letters, found and traced the word “teamwork.” There were no other letters traced in the word search, and no letters missed from the word.

I was amazed! And I still am. Of all the other combinations of letters she could have traced, she not only found a word, but she found the one that best sums up my experience as one of her teachers. Teamwork.

Everyone all together, for Rhema.

IMG_0493mod2

Picture on the wall at school.

{The walls of a special education school are decked with large photos of the students. Near the front door is a picture of Rhema taken a few years ago. Every time I walk into school one of the first things I see is her picture and it speaks volumes to me. It tells me that she belongs, that her teachers are there for her, and she and her fellow students are an inspiration them. It tells me that no matter what kind of day she’s having, she is treasured and celebrated every day. And really, what more could I want?}

My letter to her teachers and therapists boils down to simple words that can never tell it all: THANK YOU.

Enough

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

We’ve been reading the story of Moses. 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 the story (by writing out choices on paper RPM-style), and I believe that she is listening and understanding. Well, that’s never happened here before, and it’s remarkable.

At first there was resistance (as in, what is my mother doing to me??”) Now it seems the time is precious, just 20 minutes or so, just for us. For the first time in eleven years I get to teach her in a way I’ve never been able to before. When we’re done, she pushes my hand toward the pen; she wants to keep going.

I picked Moses. Because he too had to find his voice.

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, 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.

image

Keeping on

So one night Brandon and I decided to watch a movie my mother had recommended called, Facing the Giants. This was years ago – Rhema was two or three. I think of that time, the span of a year, in which Rhema was diagnosed with autism and then with epilepsy as the year I could not concentrate. We were immersed in 30+ hours of ABA, speech therapy, OT and any other therapy I could find. I remember walking around the grocery store thinking, ‘My daughter has autism.’ I recall sitting in church as people sang and the pastor preached and the only thought running through my head was, ‘My daughter has epilepsy. My daughter has autism.’

(What’s so interesting is that even now, after all these years of continued therapy, IEP meetings and appointments and the myriad days and minutes of living life with my beautiful, complex, amazing girl, the shock of her autism can still knock the wind out of me).

Anyway we put in this movie starring a Christian film director. The suppporting cast was made up of volunteers from a Baptist church in Georgia. During the first twenty minutes of the film, B and I laughed because we thought the acting was so amateur. By the end of the movie we were bawling like babies.

There’s this part in the movie where a boy has to do the death crawl across the football field while he is blindfolded and carrying another team member on his back. The boy keeps crying out, “It’s too hard! I can’t do this. It hurts!” And all the while his coach is beside him, yelling at him to keep going and not quit. Call me crazy, but at that time in my life when my world had fallen down, when I seemed immobilized by a haze of grief over my child’s diagnoses, I felt like God was talking to me… through a small-budget football movie… telling me to ‘keep going.’ That He was with us and would get us down that field.

(I know nobody ever has time to watch videos. But in case you do, this is the scene.)

As Rhema and I try to do RPM at home I am again reminded to press on. It’s not going so well for us, this RPM. (I’m chuckling because that is the understatement of the year). I don’t feel like a natural teacher. I get discouraged and feel like I lack the skills, patience and perseverance to teach her well. My gratitude and admiration for her teachers and what they do every day has increased even more.

From Rhemashope Faceboook page:

RR_RPM_FB_Capture

We’ve had many days of (ahem) less than successful RPM sessions, but Rhema and I seemed to really make some progress today! A precious mom in Australia gave me some ideas to try, and by the end of the session my girl was pointing to letters on a letterboard to spell words. (Thanks Bec!)

Afterwards Rhema had a huge smile stuck on her face. She is not a big smiler. Brandon said, “She seems really happy! She can’t stop smiling!”

I think she knows. We’re not giving up. We’re going to keep trying and working hard to help her find ways to communicate. We’re getting better and closer every day. And I think tonight she really grabbed hold of that hope.

Joy.

When I am most overwhelmed by the road before us, it seems then that Rhema will show me something. Something that speaks louder than words. In her own, amazing Rhema-way she encourages me that she is learning and growing and communicating all the time.

I think it’s her telling me. And me telling her. And God telling us…

Yes, my love. I know it’s so hard. Today we are going to keep on.