Rhema’s prayer

I was flipping through the Jesus Storybook Bible and found a story to read to Rhema about prayer. As usual, it seemed like the message was just for her and just for me straight from the heart of God.

“When you pray, don’t pray like those Extra-Super-Holy-People. They think if they say lots of words, God will hear them. But it’s not because you’re so clever, or good, or so important, that God will listen to you. God listens to you because he loves you.

Did you know that God is always listening to you? Did you know that God can hear the quietest whisper deep inside your heart, even before you’ve started to say it? So you don’t need to use long words or special words. Because God knows exactly what you need even before you ask him.”

We didn’t rush over those thoughts. We chewed every morsel as I wrote the words down and she re-traced them or scribbled over them. We practiced spelling on the letter board.

And then I asked her, “Rhema, what do you pray for? Can you tell me?”

I really don’t have words to describe what happened next. It’s a moment that has changed me and changed our family forever, I am shaking and laughing and crying as I write this. Four words. The first sentence she has ever spelled for me…

And I wondered if anyone would believe me when I told them about Rhema’s prayer. I wondered if I would believe me.

So I grabbed an iPad to record her. I asked her to spell it again, and she did.

This is her prayer.

This is His answer.

“I HAVE MY VOICE.” ~Rhema, age 11

That my house will be full

“Church is the one place where we should always feel love and accepted, yet it is one of the most intimidating places of all.”
~Jennifer J. Holt, Homelife Magazine, 2011

This past weekend I attended a Disability Ministry conference with two dear friends. The aim of the conference was to help churches learn practical ways to serve people and families with special needs. It was good to be in the company of others who shared a desire to see churches implement creative ways to reach special needs communities. I came away inspired, armed with notes and a new book (Autism and Your Church, by Barbara Newman), and my head swimming with ideas.

I love this excerpt from the book:

It was time in the worship service for the pastor to give the message. As the pastor began to speak, an individual started making noise in the back of the church. Without missing a beat the pastor calmly said, “Some of you might be hearing my friend Marie. Marie’s mom and dad have asked me to tell you that she has Autism Spectrum Disorder. Sometimes the tags in her clothes or a sound she hears really bother her. I appreciate that Marie is my cheering section today.”

A workshop I attended included a panel of 4 adults with special needs sharing about their involvement in church. This was the best part of the conference for me, and I found myself actually whispering prayers to God on their behalf (and Rhema, too) throughout. The panel was asked about positive experiences they’ve had in church, and I noticed that each response had something to do with friendship. It was clear that community and the relationships they’d formed in church were so significant to them.

When the panel was asked about negative experiences in church, a young woman spoke about how she struggled with the music being too loud for her. She said it actually physically hurt, and she often experienced guilt over needing to leave. For years she thought it was her fault. (And at this point I wanted to put my arms around her). She said that now she understands that it’s ok to leave the sanctuary if she needs to and she is learning not to be so quick to blame herself.

Another young woman, with a speech delay, also answered the question about her struggles in church. Each precious word she spoke took effort and I cannot ever forget what she said: “There’s no other kind of me.” I thought of my Rhema. In our church right now there is no other little girl like her. And I don’t know all that she feels, but I know she enjoys being a part of things even if she’s doing her own thing – that is her part. And I’ve no doubt she desires friends and meaningful relationships, as we all do, even though she may not show that longing in a way we might expect. Oh, how I pray that she will experience true friendship in her life.

There’s no other kind of me. Sweet girl, it’s a burden and it’s a gift.

Another question for the panel was, “What can people in church do to make it more welcoming to people with disabilities?” One answer: “We don’t like to ask for things, we are not being picky, we are not expecting everything to be perfect. Just know that it’s a big deal to ask for help.” A young man with Asperger’s said that he wanted people to know that he has what he has and is what he is forever, and that it’s hard.

As I listened, I was suddenly filled with an odd dream, a desperate prayer and an even bigger hope. God, one day can my Rhema sit on a panel like this? Can we hear from her? – what she thinks and how she feels, the good and the hard, anything she wants to share. I don’t care if it’s her own speaking voice or an automated voice or pictures on an iPad, please please help her find a way. Please just let me hear what’s inside.

The panel did a great job, and I hope there will be many more conversations like it in many churches. An oft-referenced Bible passage is Luke 14 where Jesus instructs, “But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Make them come in, so that my house will be full.”

The ones who require extra help, the ones who are too loud, the ones who don’t speak, the ones who are lonely or bullied or overlooked, the ones who cannot seem to reciprocate – God says they will bring blessings! And they are to be given special honor.

Do not let fear or your child’s challenges (or your own challenges) deter you from finding a church home. I have found that many churches have a heart for the special needs community – from putting trampolines in Sunday school classrooms to setting up buddy programs to hosting “Mom’s Morning Out” for women who have children impacted by disability.

Two years ago this happened:

So there’s another thing about church. We always sit in a small pew, in the second to last row, near the door so that we can make a fast getaway when the need arises. I think it can be overwhelming for Rhema still – all the people, the sights and sounds – but her seat, her pew, is predictable and comforting. In the past, if we’ve arrived and people were already sitting in “our” pew, Rhema has attempted to sit on them. When we re-direct her to another pew, she’s completely thrown. She’s even cried.

This morning before church, B and I had a brief conversation about where we’d go if the pew was already occupied. We had a plan.

But when we arrived at church we found this in our pew:

(I “whited-out” our last name for the blog).

No one said anything to us about it. They just noticed our struggle on Sundays and wanted to make it easier. We often worry that we’re disrupting the service. But that little sign spoke volumes to me – that we are loved as we are, that we belong, that we are family.*

Ed Note: If you are visiting a church for the first time, call the church office a week ahead and let them know about your particular needs.

Some articles and resources:
Is Your Church Open to Autism? By Emily Colson
Leading a Special Needs Ministry: A Practical Guide to Including Children and Loving Families By Amy Fenton Lee
The Inclusive Church blog
Special Needs Smart Pages: Advice, Answers and Articles About Teaching Children with Special Needs by Joni Eareckson Tada

Love after all

I hear a strangled scream from one of my children and then the pained cries of the other. I cannot move fast enough to get to them.

Through many tears Hope explains how she was reading her book of Princess Adventures and how Rhema was sitting on the bed and became upset. How she went over and gave Rhema a hug. (When Rhema is particularly troubled the only person she welcomes touch from is Hope.)

And this is what Hope does when she senses her sister is distressed or overwhelmed – she holds on tight and tells her it’s ok. She doesn’t know why she is distraught, why it happens so often, but that doesn’t really matter to her; she just needs her sister to know that she is never ever alone. And nothing that agitates her or hurts her or scares her or saddens her is bigger than this. This love, this hug.

After the hug Hope goes back to her book. Then Rhema screams and throws her iPad across the room. It smacks Hope in the face, leaves a knot on her head.

Hope cries in my lap. Rhema babbles and hums in the background. No one says sorry but me.

We head to the kitchen for an ice pack. Rhema comes down minutes later, hunting for cheese in the refrigerator. Hope grins wide -even though it hurts – because her sister loves cheese, that’s for sure. She walks over and reaches up, “Are you feeling better now, Rhema??”

Rhema forgets about the cheese for a moment, leans close to Hope. They do the cheek bump. And teach me what I still desperately need to learn – the way of true love.

Love is patient, love is kind.

It does not envy,

It does not boast,

It is not proud.

It does not dishonor others,

It is not self-seeking,

It is not easily angered,

It keeps no record of wrongs.

Love does not delight in evil but rejoices with the truth.

It always protects,

always trusts,

always hopes,

always perseveres.

Love never fails.

~1 Corinthians 13:4-8

Unbroken

It was only a matter of time with all the evening outbursts and midnight parties. In fact she’d snapped the wooden frame of her bed several times over the years, and we always managed to repair it. But this last time when I found her sitting atop many broken pieces and splinters, I said, Peace out, homie. The End. You’re Done. (To the bed. Not the child.)

While I was at work our youth pastor kindly came over and moved the parts to the basement for me. A couple days later three friends arrived to determine if the bed was as I said: irreparable.

Side note: Since Brandon deployed last summer the men from our church have taken care of the girls and I so well. From the house to the car to the snow to opening jars of pickles – they have stood in the gap for us. We are so blessed!

The men loaded the bed pieces onto a truck and went on their way.

I began browsing special needs furniture stores online for the toughest bed I could find.

The next day Steve called to say they’d rebuilt the bed… they’d also built a new railing for her… and when could they bring it by?

And I laughed incredulously and thought of God’s intention to heal all the broken things in me. No matter the shattered pieces, there is never irreparable with Him. Only Him. Sometimes He knocks it down, only to build it up stronger.

And if that bed can be re-built and I can be re-made, there is great hope, a happy ending to the story.

One day He will heal and bind all that ails. If not here and now, one day.

I know one glorious day we will be disability-free, pain-free, sin-and-sadness-free. My friend L wrote: ‘I cried when I imagined Rhema, who doesn’t necessarily respond when you call her name, rising up at Jesus’ voice calling her. I pictured her hearing him and responding, unhindered by autism. Autism and epilepsy will be non-factors.’  She’ll lift her head and dance upon gold-paved streets. She will open her mouth and sing praises to her Lord forever.

~Rhemashope, March 2012

*Updated with pictures:

 

Spotlight

In the weeks since Rhema’s hair-pulling/eating returned with a vengeance I’ve been doing some letting go. Her amazing curls have always been precious to me, and perhaps as my expectations for both of our lives shifted over the years, I turned her physical beauty into something of a consolation, something I could control.

After we cut her hair short last year because of trichotillomania, a few friends told me about dreams they had in which she was talking and her hair had grown back. Without realizing it, I associated long hair with health, happier days, and progress for Rhema.

Even in this, I think God has had something to say about trusting Him, believing He’s at work even though my measuring stick tells me different. And about holding onto Him… not something as fleeting as hair. “The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.” (1 Sam 16:7).

Life with Rhema is making me want to see people better, with God-eyes… and love them.

We were waiting in line in a crowded grocery store, and Rhema could not stand still. I watched her as she weaved between shoppers and carts and rocked and hummed and sampled a few boogers. I saw her mind processing the sights and sounds in her unique way. I saw her hands, shirt and pants stained from the markers she’d colored with earlier. I saw her anxious body still pudgy from the weight she gained while on a particular medication. I saw the thinning hair and bald spots on the top of her head. And she was so genuinely lovely, every part of her, I left my place in line, rushed to her and wrapped my arms around her and held her close.

“It’s time to throw out my ideas of what I thought life would be, should be, and let joy fill up those brand-new vacancies.”
~Emily Colson

*

This blog has a Facebook page now! (I’m going to try and type the next line with a straight face. Here goes.) Please like us at http://facebook.com/rhemashope .

🙂

Their version

Thanks for your prayers for Rhema! She is still struggling a lot, but as we’ve come to expect on this journey, even on the hard days there are beautiful moments of progress, hope and love that just take my breath away. I’m so thankful God does that for us. We are blessed!

I almost forgot the many hours of early intervention, OT and ABA therapy in which the goal was to help Rhema clap her hands. She could not imitate the action and when our hands guided hers, her fingers would curl in. It seemed to take much motor planning and coordination to flatten her hands and put them together.

But now there is Pat-a-Cake. (In which Hope takes all credit for teaching)…

Their own special version of non-verbal imitation, rhyme and rhythm, associating gestures and spoken words, social play, joint attention, and miraculous, one of a kind sister-love connection. 🙂

 

Unfulfilled dreams

Many years ago my mother gave me a tape that had recordings of Martin Luther King’s lesser-known speeches and sermons. They were fascinating and I discovered that behind the image of the great historical figure, there was a man who simply had a heart for God. He was a man who doubted, who got tired and discouraged in the face of indescribable adversity (- jailed over 18 times, nearly stabbed to death, his house bombed 3 times). But he always came back to trusting in His Lord and standing in courage on his faith.

His sermons continue to speak to me in the midst of my own journey.

Once he preached a sermon entitled Unfulfilled Dreams. I am there now, in the old country church of hard wooden pews and no air-conditioning, sitting in unfulfilled dreams. I am moving to the sounds of Yes and Amen, the tapping of feet, the flapping of cardboard fans from the local funeral home. I am hearing the voice of Jesus, say still to fight on.

Oh this morning, if I can leave anything with you, let me urge you to be sure that you have a strong boat of faith. The winds are going to blow. (Yes) The storms of disappointment are coming. (Yes) The agonies and the anguishes of life are coming. (Yes, sir) And be sure that your boat is strong, and also be very sure that you have an anchor. (Amen) In times like these, you need an anchor. And be very sure that your anchor holds. (Yes, Glory to God)

It will be dark sometimes, and it will be dismal and trying, and tribulations will come. But if you have faith in the God that I’m talking about this morning, it doesn’t matter. (Yes) For you can stand up amid the storms. And I say it to you out of experience this morning, yes, I’ve seen the lightning flash. (Yes, sir) I’ve heard the thunder roll. (Yes) I’ve felt sin-breakers dashing, trying to conquer my soul. But I heard the voice of Jesus, saying still to fight on. He promised never to leave me, (Yes, sir) never to leave me alone. (Thank you, Jesus) No, never alone. No, never alone. He promised never to leave me. Never to leave me alone. (Glory to God)

And when you get this faith, you can walk with your feet solid to the ground and your head to the air, and you fear no man. (Go ahead) And you fear nothing that comes before you. (Yes, sir) Because you know that God is even in Crete. (Amen) If you ascend to the heavens, God is there. If you descend to hell, God is even there. If you take the wings of the morning and fly out to the uttermost parts of the sea, even God is there. Everywhere we turn we find him. We can never escape him.

~Martin Luther King, Jr., from Unfulfilled Dreams

God sitting on your plate

Rhema is having a couple medical procedures this week. She is still vomiting. Even after I chopped off all her hair and even after her gastroenterologist put her on reflux medication. So she is scheduled for a fluoroscopy on Tuesday and an endoscopy on Thursday. The fluoroscopy involves Rhema fasting for a period of time and then drinking a contrast material and then getting her GI tract x-rayed.

Y’all know my girl, right? I can’t begin to imagine how all that’s gonna go, but one thing’s for sure it will be… hhhmm… interesting.

The endoscopy is considered day surgery and Rhema will be put under general anesthesia. The doctor will take biopsies of her esophagus, stomach and intestines. As soon as we heard she would be put under, Brandon and I got on our phones and starting calling up all of her doctors – neurologist, pediatrician, dentist, endocrinologist:

“Hey, doc. If there is anything you ever wanted to do to Rhema, well now’s your chance! She’s getting put under next week!”

Yeah, that sounds kind of bad. But seriously.

One doc was like, “Oh! Get this and that blood test and maybe an MRI and…”

Rhema also has to have an EEG soon and I called three times begging someone to agree to put the leads on while she is out, but alas, the sedation will affect the EEG results. So we’ll have to wait to do the EEG until she’s her usual Incredible Hulk self.

And the dentist is going to get his shot to look in her mouth and do a cleaning but not until next month – when she will be put under anesthesia again.

Hope was dancing to a song that had these words:

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. ~Psalm 73:26

She asked, “What does it mean? ‘My portion forever.’”

“You know how you get your own plate of food at dinner, your portion? That verse says that God is your portion. And how big is God? Sitting on your plate.”

She giggled, stretched her hands as wide as she could, looked up to the sky and spun around. But she knew she could not begin to express his big-ness.

But my portion containeth him whom the heavens, and heaven of heavens, can never contain. ~George Swinnock

“He is all for you. And not just for a day. Or a year. Or a hundred years. But forever. He will never run out.”

It’s going to be a stressful week – even though these are “small” procedures it does something to a mama’s heart to see her baby unconscious and being rolled into an OR. I’m pretty sure my heart and flesh will fail. (It doesn’t take much). But I’m so thankful to know God is the strength of my heart and my portion forever.

All right now

November 2012

Last week I visited Hope’s kindergarten class to read stories and do a craft. (I’m still laughing at myself, that *I* went to school to do a *craft*. I brought Magic Noodles and basically said, “Ok kids… make something.”)

One of the stories I read was the one about Hope and Rhema and high-fives from the Chicken Soup book, Raising Kids on the Spectrum. Before reading it, I provided a little background.

I asked the class if they knew anything about autism, and a girl offered this explanation:

“If you have autism… you kind of do things… wrong.”

Her words took me back to an incident several months ago.

Because of the girls’ schedules, I always have to drop Hope off at school first. This has not always been easy for Rhema. She used to bolt into Hope’s classroom, grab paper and markers and color vigorously. Hope’s teacher, always so kind and accommodating, would even set out scratch paper for Rhema to use.  And Rhema would color (on the paper and the tables) while I helped Hope hang up her coat and lunch and get out her school materials. The problem was she never wanted to stop coloring and leave.

One particularly off morning, I used my best therapist voice and told her she could color for one more minute and then it was time to be all done. Hope and her classmates were already seated and ready to begin their day. After a minute passed I cheerily said, “All done, Rhema. Let’s clean up.” I moved to help her put away the crayons and markers.

She screamed and grabbed me by the collar.

“Rhema,” I said calmly. “It’s time to go. Let’s be all done.”

She let go of my collar, grabbed another’s student’s project and started scribbling on it.

“No, Rhema. That’s not yours. We are all done coloring.”

She grabbed me by the hair and screamed again. The more I tried to talk to her the more resistant and angry she became. Hope tried to help, but Rhema escalated quickly and any control I thought I had slipped away. As she screamed, many of Hope’s classmates covered their ears. One girl looked like she was about to cry and said she wanted her Mommy. I was about to cry and wanted my Mommy.

I ended up leaving an agitated Rhema in the classroom while I ran to get my phone out of the car. Eventually I was able to distract her from the coloring with my phone and walk her outside. It was not a happy scene.

.

“Sometimes kids with autism do things differently. But it’s not wrong.” I told the class last week.

As I learn more about the people in my life with autism I continue to be amazed by their “different”. How creative, resourceful, and brilliant they are, how blessed we are to learn from them.

“Can you imagine needing and wanting to say something but you cannot? Can you imagine how frustrating and challenging that could be?”

I really had not come to talk about autism. I’d come to read bug stories and hand out gummy worms. But I hoped they’d remember, that what I had said had made a difference.

“You know, Hope’s sister has autism. Did you know that they have never fought? They have never said an unkind word to each other, not one. When Hope is sad, Rhema is sad. And when Rhema is sad, sometimes the only one who can cheer her is Hope. They have a really, really special relationship. I’m their Mommy and even I am amazed by it.”

I looked at Hope sitting next to me in the circle. She smiled shyly, but oh my goodness, she shined. Love and joy radiated from her whole body.]

.

The next day the kids were on the playground when Rhema, Hope and I arrived. A girl from Hope’s class ran over to us.

“Hi Rhema!” she said.

My heart swelled, and we grinned big.

When Rhema didn’t make a sound or look at her, the girl asked me if she could hear.

“Yes, she can. She hears you loud and clear. Thank you so much for saying hi.”

At their best

This past weekend I had the privilege of speaking at a fundraiser for Rhema’s special education school. It’s not easy to put into words what this school means to us… I blubbered through it! But really it’s my thank you letter to her amazing teachers, clinicians and therapists.

*

One of the biggest questions special needs parents wrestle with is “Is it Enough?” Is my daughter in the right academic environment? Is my son getting all of the therapy he needs? Should we try XYZ treatment? Is he being challenged? Are we making progress? Will she have what she needs to make it in this world when I am gone? Is it enough?

We are a military family, and right around the time the school opened (Rhema had been receiving therapy there for years), it was time for us to move to a new duty station. My husband was scheduled to deploy. At the time the Army had something called the Stability Transition Team – it was a 15-month deployment that involved operating with a small team “outside the wire” to train and counsel Iraqi police/border patrol. It was a dangerous and unpopular job – so much so that incentives were offered to deploying soldiers who would do this mission. One incentive was getting to choose where you live. You guessed it. Brandon agreed to take the job in exchange for our family getting to stay here for another year so that Rhema could benefit from some of the best schooling and medical services in the country. When he returned over a year later, we fought all the way up to the Surgeon General of the Army to be able to stay here. We won another 2 years.

Now our time is up again. And again Rhema’s dad will deploy for a year – hopefully this is the last time – so that we can stay here and Rhema can attend this beloved school.

I want you to know how grateful we are for you, how much we depend on you, how much your work and care impacts our entire family. I want you to know that we will go to great lengths just so our children can learn, thrive, be who they are, and enjoy life to the fullest. Thank you, thank you for your life-changing work.

I believe other parents will agree with me: At the end of the day, no matter how good or hard, we can take a deep breath knowing that our children had the best chance that day to learn and grow. Every day you help me answer Yes to the question of “Is It Enough.”

At school our daughter has learned to button her shirt, to request cheese using the communication app on her iPad, to put her shoes on the right feet, to wait, to ride a bike, to use the toilet, to fold clothes, to swim and ice skate, to make eye contact, to write her name, to say hi. And the list goes on and on.

Her teachers have endured massive amounts of snot, pee, poop, puke, tears, scratches, bites, hair-pulls, grabs. And that’s all just from my kid. And yet their passion, commitment, creativity and belief in our children’s ability to excel never wavers.

Some memories that are treasured in my heart:

Tim following us home from school one day just so he could help me get Rhema out of the car, Courtney and Kate’s gentle, patient ways with her, Corrie’s hand on her back at the swimming pool, Amanda E. soaking wet at the pool because she gave up her own towel for Rhema, Jill touring schools with me in DC when we thought we’d have to move there, Katelyn putting her hand on my shoulder and saying, “You’re going to get through this, Jeneil” after Rhema had an epic, tear-jerking meltdown in the parking lot, Amy M. and Chelsea coming to Rhema’s Special Olympics gymnastics class on a Saturday just to help, Heather teaching her to trace letters and then write her name. These are just some of the moments I hold on to.

And the amazing thing is these are just the moments I’ve seen. I know that my daughter’s day is filled with countless acts of kindness and ordinary miracles made possible by the people in this room who teach her.

The other day I came home and Rhema was standing in the corner in the kitchen. From a distance I could tell it one of those times when she was so present, so engaged. She had this beautiful eye contact and I was so happy to see her.

I said, “Hi Rhema!”

She said, “Hi, hi”.

I said “How are you?”

She said “Gu-! Gu-!”

And I thought my daughter and I, we just had a conversation. Once I was told her brain was spiking and seizing 58 times a minute.

And just the other day we had a conversation. What a gift. What a miracle. And it’s because of you. Your hard work and her hard work.

On the Law of the Gift, Cardinal Dolan said, “We are at our best, we act most in concert with what our maker intends, when we give away in love to another…” (Thanks for the quote, Emily!)

From the bottom of our hearts, we thank you.