This dream does not tarry

“For me writing has always felt like praying…”
~Marilynne Robinson, Gilead

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A couple weeks ago I blogged about Rhema learning to trace the letter “R”. I wrote about Heather, her OT, believing in her and the dream she had that Rhema would one day write her name independently. I believed with all my heart that that “one day” would come, but I knew it would be in the far-distant future. I settled in for the long haul (-standard procedure where Rhema’s concerned), happy to have a reason to dream again.

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So I was totally not ready for a miracle when I picked Rhema up from school.

Jenny, one of her teachers met me at the door.

“I don’t know if you’ve gotten an e-mail yet. But you’re going to receive a video we recorded.” She paused. “Rhema traced her entire name independently today.”

I stared at her, confused, and my heart started pounding.

She must be mistaken. Rhema is still just learning the R, and that took months!

Maybe I heard her wrong.

Or maybe I heard her right.

But, oh, don’t make me hope… because in this moment I want nothing more than this.

She was wiping away tears, and wonder and gratitude filled me up and began leaking from my eyes.

“Come back to the classroom. They’re going to have her do it for you.”

I cried. I did. Right there in front of people. Nose running and everything. 

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There’s a song that our old youth choir used to sing based on Habakuk 2:1-4.

“Write the vision, and make it plain upon tables, that he may run that readeth it.”

I’ve always loved the phrase “write the vision”, and even dared to hope that blogging might be something like that. The writing out of faith like a prayer, recording the good, hard lessons, waiting, and then watching Him give what we don’t deserve and do “immeasurably more than all we ask or imagine.” Thank you, Lord.

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Some may watch the video clip of Rhema tracing her name and think it insignificant. They won’t know the hours and hours it took to get her there, and that some said it couldn’t be done. They won’t know the happy tears her teachers and I shed as we watched her trace with no physical prompts at all. They might not even notice that her pencil grip is still immature and her E needs a lot of work. They won’t realize that we still have a long way to go before she can write (instead of trace) independently, but that she just took one super-sized leap toward that goal.

They won’t understand how my girl wrote the vision, made it plain.

And gave us a little more hope to run on.

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Mended

 nay_walk

mend – “to make (something broken, worn, torn, or otherwise damaged) whole, sound, or usable by repairing.” – dictionary.com

When my twin was diagnosed with MS three years ago, she could not walk. Lesions cluttered her brain and spine. The pain was so intense that she could not stand to feel the hospital sheets against her legs. Since then she has endured daily painful injections, monthly infusions, and a myriad of MS symptoms.

 

But today, she walked over three miles in the National MS Society Walk in Boston. Each step was taken with the love and support of family and friends (and bloggy pals of mine she has never even met –THANK YOU!)

 

Lexi, her daughter, wore our motto proudly: Don’t MS With Me!

lexi

 

img_30201Rhema, Brandon, Jeneil, Hope

 

This weekend my eyes were opened to the power of God to mend.

It started with my sweet friend Lianna sharing a book with me of communication e-mails that were sent out after she was in a car accident that very nearly took her life. The cover of the book quotes “Come and see what God has done…” Page after page I see His healing hand on her as He knit her back together throughout a long recovery process. Her life is such a miracle.

Even though she still has to fight, I see Him mending my sister. Thank you, God! Because three years ago, today would not have been possible. I see Him mending my daughter, Rhema. (She did so well today!)  I am surrounded by walking miracles, their very lives make it impossible to doubt the ability and will of God to heal.

Even me. Even us. He’s mending.

With tender mercy and a delicate hand, He is patching up our hearts, renewing our minds and bodies, making us usable by repair. What a miracle!

 

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Visit Beth at A Mom’s Life for Miracle Monday. miraclemondaybutton-11

Ambulatory EEG

Cute backpack, eh?

Cute backpack, eh?

Yesterday Rhema got her own princess cap.

We’re at home for the next 24 hours doing an ambulatory EEG. Initially, we were happy at the thought of not staying in the hospital, but we were concerned about keeping all the electrodes glued to her scalp and the monitoring equipment out of the toilet (literally). We’ve had to be pretty inventive in the last few hours, but so far, Rhema is doing great!

The diazepam protocol Rhema’s been on for the last six weeks has brought about some interesting results. There’s no doubt that it has helped to calm the electrical storm in her brain, and there have been several amazing moments for us:
1) In the hospital, a high dose of diazepam essentially cleaned up her EEG. Spike activity was knocked down to 2%!

2) Hi!

3) Soon after she began the protocol, I believe Rhema spoke her first sentence. She wanted a popsicle and dragged me over to the freezer. She said in a sing-songy voice, “Iwant… …. …. … pop.”

4) She began greeting me. If I’ve been away for a couple hours, she runs to me with a smile, claps my hands together as I stoop in front of her and says “Yaaayyyyy.” Oh. my. heart.

5) This past weekend some people stopped by our house (2 adults and a 6 year-old girl). Rhema walked right up to them, and when they said hello, she repeated “hello” right back to them. Then, with interest in her eyes, she walked over to the little girl and gently patted her on the chest. Brandon and I had to pick our jaws off the floor. We’re still trying to figure out what caused that little exchange. We have never seen Rhema do that before. Ever.

Most of these events have been “Elvis Sightings” moments; they came out of the blue, and then they disappeared just as quickly, not to be repeated. 

And besides them, Rhema has just been Rhema.

In fact, the diazepam has actually caused some not-so pleasant side effects. It usually makes her hyperactive and agitated. She’s been unable to focus at school and we’ve seen an increase in noncompliance and tantrumming. She’s had trouble sleeping at night (but Kathryn prayed Ps. 4:8 and it’s been getting better!). And she has limited her already limited diet to about 3 food items.

Sigh.

Honestly, a small part of me was hoping for some earth-shattering miracle. I could see us on the cover of Children’s Hospital magazine with the headline “Medical Breakthrough” and Dr. BEAM beaming at our side. It didn’t happen. But that’s o.k.

I am just thankful. So thankful that God is God of both big and small miracles.

Only peace here in this heart of mine… and that, my friends, is one of the big miracles!

Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the LORD for ever: for in the LORD is everlasting strength.” Isaiah 26:3-4

PECS – A Picture’s Worth

A few months ago, another ordinary miracle occurred when Rhema began communicating by using pictures. Words cannot convey what a momentous event this was in our lives. She wanted rice. She casually went to her PECS (Picture Exchange Communication System) book and brought her rice icon to me.
“You want rice? O.K.!”

I made her rice as fast as I could, sat her in her chair, and she ate it all. Her face was one of peace and contentment. I was amazed, truly amazed. This was one of the first times Rhema had ever communicated a desire in a way that did not involve her dragging me to the kitchen and thrusting my hand toward the refrigerator. There was no tantrum, no frustration, no guessing game between she and I.

Once before I had tried to implement PECS at home. One day I had taken snapshots of Rhema’s favorite foods and snacks and then checked out a book from the library on PECS. I ran to Staples and excitedly purchased 2 sheets of posterboard, Velcro strips, and laminating materials. I am not an arts-n-crafts-or-scrapbooking kind of girl. So this was a major project for me! While Rhema was at school, I laminated my pictures, put the Velcro on and proudly taped two large posterboards on a kitchen wall. I eagerly waited for Rhema to come home, just sure she would be just as excited as I to see that her Mommy had provided a way for her to communicate. When Rhema came home, I showed her the Wall of Food Pictures, and she promptly pulled the posterboard off the wall. Undaunted, I taped it back up only to have it ripped down seconds later by her little sister. And so it went, every time I turned my back Rhema and Hope made a game of ripping the posterboard down. By the end of the day, my magnum opus was dirty, crumpled and torn.

Thankfully Rhema was learning how to use PECS at school. I am grateful to her teachers for their unrelenting patience in working with Rhema. A little over a year ago it was difficult to even get her to look at (or attend to) a picture or symbol, and if you handed her a picture she would just throw it down. At times we were not sure that Rhema even understood what she was looking at.

Shortly after that first time Rhema requested rice at home, she surprised me again. She wanted a pancake, but we did not have a pancake icon in her PECS book. So she went and found a picture of a flat cookie and handed it to me. That was enough to clue me in to the fact that she wanted a pancake (Rhema doesn’t eat cookies). Another time, she “told” me that she wanted a taco by giving me a picture of a tortilla wrap. I was thrilled and amazed. My little girl is clever. Yet again, I had underestimated her.

After years of silence and what seemed like indifference, I was learning that Rhema was longing to communicate with us. I even discovered that she knows what she wants – when she wants a taco, she really wants a taco! How many times has she wanted a taco, and I did not know? Before she would tantrum and I would have no idea why. How frustrating it must be not to be able to express your thoughts and wants– it brings tears to me eyes thinking about it.

We still have a long way to go with PECS, but Rhema is learning. We still pray, pray, pray for spoken words, but Rhema is learning. And I am so very thankful to God.