I had forgotten how difficult communication can be when Brandon is deployed. Those first couple weeks after he left… several times a day I would flip open my cell phone to give him a call, forgetting that I could not reach him.

We have to wait for a call or e-mail from him, never knowing when that might come. When he does call, the connection is bad – there’s a delay, and so it seems like we’re talking over each other and most of the time I cannot hear what he’s saying. And of course the calls are never long enough – we talk the big issues fast:

How are the girls? – Fine, How are you? How are you? – Fine, Fine, Where are you? Where? Did you send a check to so and so? … Hello?

Then the call drops and there’s silence.

I don’t mention that Hope’s getting really tall. That she prays for her Angel Cake everyday. That she’s talking back a lot and I’ve got to deal with that and it’s totally new because I’ve never had a child talk back before. That sometimes I just will not do, she just wants her Daddy, and she tells me so. That she is a huge help to me. That she has an incredible memory. That she wants to play the violin… so we better start saving our pennies. That I told her I don’t want her to grow up and turn three years old in 13 days. That she put a patronizing hand on my shoulder and said firmly, “Sorry, Orange Blossom. I’ve got to.”

I don’t mention that Rhema is really beautiful. (He already knows that. But every day I think, Wow, she’s beautiful.) That she’s not sleeping again. That the EEG results are in, and I had to wait all weekend for the doctor to call. That I worry about her relationship with her sister. That she accidentally ate an artichoke!!! That I wonder if she wonders about him and where he is. That she managed to escape again (but don’t worry, I found her). That the other day her teacher said she repeated, “Hope”, “Mom”, “Dad” when looking at our pictures.

I don’t have time to mention all of the gifts and blessings that have been poured out on us. The generosity of people -unbelievable! - the kindness they’ve shown us. That I do get lonely sometimes. And overwhelmed. That I’ve got really, really good friends. That one of our favorite old restaurants opened up in the next town over. That we’ve got our routine, our pattern, things are just fine. That God is so good! That I wear his old Army T-shirts and sweats to keep him close.

*

Every now and then we get to video chat (using Skype). We’ve only been able to do it a couple times since Brandon’s been traveling in northern Iraq. Before he left, he took with him an extra webcam that Jenn sent us. It has been extremely important in helping us stay connected. (Thank you, Jenn!)

I thought that the video chat would be great for Rhema, especially since she does not do well with phones. It was initially disappointing – when Brandon would skype with us, I could not get Rhema to even look at the screen and see him. (Darn, we sure could use some joint attention!) He would call her name over and over, and I would try to get her to look, “Rhema! It’s Daddy.” She would not look, she’d just run away.

The last several times we got to Skype, I closed Rhema in the room. Even though she was bouncing around, never staying still long enough to attend to the computer screen, I told Brandon just to talk to her. “At least she’ll hear your voice,” I said.

And so he talked.

He told her he loved her and missed her and why he had to go away.

She never once showed any sign that she heard him.

Then, the last time that we skyped, several weeks ago, Rhema actually sat in my lap for a few minutes.

I dangled a popsicle above the computer screen.

She looked.

And she saw him.

And he said, “Hi, Rhema.”

And she said, “Hi.”

It is love that asks, that seeks, that knocks, that finds,
And that is faithful to what it finds
-St. Augustine

It’s common to hear some parents of children newly diagnosed with autism to say, “We had a bright-eyed, engaged little boy and then we lost him.”

There’s debate and controversy around the subject.

I don’t know exactly what happened. Or how it happened or why it happened.

But at one point we had this:

And then suddenly, one day, we had this:

For whatever reason she retreated into her own world, and every day since then we’ve been working to draw her back into ours. You could say we’ve been trying to “find” her behind the walls of autism. There have been moments when we’ve discovered parts of her we never knew (or forgot) existed. And each discovery is thrilling and addicting – we want more and more. She is pursued in earnest; this seeking to know more of her a daily aim.

I was “lost”, too. Gone was the self-confident, capable, make-it-happen version of myself. I had no ability to make my daughter speak or eat or even sleep. Angry. Bitter. Helpless. Unable to concentrate. My faith shaken. Going through the motions. For a year. Disappointed in a God who should know better than to do this to me. As we searched for Rhema, I wondered where I was… and where the heck God was.

Are you there, God? It’s me, Margaret. (Anybody remember that book? Am I dating myself?)

Where are You in all of this?

Turns out it’s a good question. Even Job said, “O that I knew where I might find Him!” (Job 23:3)

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the LORD… Jer 29:11-14

I still have my questions, some of which I may never get answers to in this life. But what I know, what I’ve found so far, is this:

There is a God who loves you with an everlasting love. It’s a love that goes beyond the highest star and reaches to the lowest hell. This God takes you, lost, broken and flawed and finds you worth it. He delights in you greatly, rejoices over you with singing. He is called Faithful and True for he takes the guilt, shame and sorrow and overcomes it on the Cross, and pronounces you free.

In all your looking, He says, look for me with all your heart. I will be found by you.

A most important search.

Rhema had a 24-hour ambulatory EEG last week instead of a sleep deprived EEG. (That means we all got to sleep – Woohoo!) I took her to the hospital on Thursday to get the leads put on, we came home, she slept, and then we went back to the hospital the next day.

It’s usually the husband’s job to go with her when she gets her leads on. The whole process is usually torture for everyone, including the technician. Rhema is incredibly strong, and in the past it’s taken at least 2 adults to hold her down.

This time around I wondered how I was going to hold her all by myself. But the technician didn’t waste time; she promptly brought out the straight jacket. (I’m sure it has a more PC name, but I don’t know what it is.)

Rhema still managed to put up a fight from the neck up, moving her head back and forth as fast as she could. That’s my girl!

First her head had to be measured and marked. This took an excruciatingly long time, and as I stroked her cheek, Rhema tried to calm herself. She whimpered and babbled and hummed. At one point, she even chuckled. And I couldn’t help it, I kissed her face a million times.

Then it was time to glue the leads on. This is worst part. The adhesive gel is cold and smelly, and Rhema is usually terrified of the small suction tool that is used to dry the gel and guaze on her head. The technician turned on the suction thingy and its hiss filled the room.

Rhema stopped humming.

“Uh oh. Uh oh. Uh oh. Uh oh,” she sang.

Even though I knew she was frightened, I loved the appropriateness of her language. I thought it was adorable, and she seemed to get over her fear quickly.

After one side of her head was done, I could tell that she was getting restless and frustrated.

“Huht, huht, huht, huht.” She kept saying over and over.

Hat? I wondered. Is she saying hat?

She looked me in the eye, straight on, and repeated, “Huht.”

Then I knew.

Hurt. She’s saying it hurts.

It just blew me away. Spontaneous and unprompted, she found a way to tell me what she was feeling. I’ve never taught her that word before, never really had a way to make her understand a non-tangible idea like ‘hurt.’

EEG’s are said to be pain-free… uncomfortable, but pain-free. But my girl said it hurt, and of course, Mommy wanted to take the hurt away. Tear off that straight jacket, pick my baby up and walk out of there.

But the EEG was necessary. And honestly, I was too excited over the fact that she actually told me it hurt!

Later, I doubted the whole thing. Did that really happen or did I just imagine it?

The next day, my friend Kristin came with us to the hospital and she went into the room with Rhema to get the leads removed while I stayed with Hope. When it was over, Kristin remarked that Rhema had given her great eye contact. “And she kept saying ‘Hurt.’”

Well, that settles it then. EEGs hurt.

All in all, the testing went smoothly, and Rhema was the best she’s ever been.

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

The past week has been rather eventful.

~First, Hope comes down with that flu everyone’s been talking about.

~Then a hawk crashes into the window on my screen door. Leaving lots of yucky bird blood and feathers.

~Later I get attacked by a pigeon on steroids in my breezeway.

~Next a radiator starts leaking.

~Then Rhema comes down with that flu everyone’s been talking about. (So we had to cancel her sleep deprived EEG.)

~Then the home security system malfunctions and begins screaming, beeping and chirping at us. (Imagine how a sick, sensory-sensitive girl manages blasting alarms in the house. Not well.) I fear the hawk and the pigeon have come back to take me down.

~Then a friend brings over a gluten-filled, dairy-fraught, amazing dinner for me to devour. Ah!

~After that, two neighbor men come over – one to put cardboard on my broken bird window and one to go downstairs in the basement (because I’m scared to do it myself) to turn off a transformer for the alarm system.

~Then one of the neighbor men tell me that I’ve a got major pipe leak happening in the basement.

~Then I wonder why crazy things always wait to happen until the husband is on the other side of the world. (Like the time a fox made its home in our backyard… but that’s a whole ‘nother story).

~Next day the security system man comes, looking like Saint Nick, to fix the alarms. After discovering that the boiler is COLD and the leak in the basement has destroyed a transformer and other electrical thingys, Santa Claus shakes his finger at me and says, “You’ve got a serious problem, young lady.”

~At which point I start laughing like Tom Hanks in The Money Pit on the verge of (in)sanity.

~At which point I hear water running, and I find a sick-but-not-sick-enough-to-slow-down Rhema starting to take a bath in the washing machine.

~At which point, I see a Bible verse that my friend left for me weeks ago in a cupboard above the washing machine.

~At which point, I seek out the other parts of the verse that she has left in the house.

The LORD your God is with you,
He is mighty to save.
He will take great delight in you,
He will quiet you with His love,
He will rejoice over you with singing.
Zephaniah 3:17

Oh. Thank you, God.

~Later, George the plumber comes to take a look at my serious problem. After careful inspection, he proclaims,

“Oh, no problem! You just are have a loose nut.”

(pause, blank stare)

I am? I do?

Oh. Thank you, God.

Update: Rhema is sick with the flu. EEG cancelled!

Rhema will have a sleep deprived EEG Tuesday morning.

That means I have to keep her up all night tonight and then drive her into Boston for her EEG, during which time they expect her to sleep.

A couple years ago when Rhema did her first BEAM study at Children’s Hospital, a technician sat us down and told us everything that would happen. It was 12:30 in the afternoon when he explained that he expected Rhema to sleep during the 4-hour study. Brandon and I stared at him for a moment and then, as politely as we could, laughed in his face.

“Oh, she won’t sleep.”
“Oh, yes she will.”
“Oh, no she won’t.”

He explained that he had been doing this for a billion years and was a master at getting the kids to sleep during the test. He said that once the leads are on, he lays the child down with mom or dad, turns down the lights, turns on music or a video, and the kid always sleeps.

We bet him a pizza our kid would not.

Needless to say, I have a handful of reports from BEAMs and EEGs performed over the past couple years that say, “Unfortunately, we could not achieve sleep.”

In fairness to our BEAM friend, I must admit that one particular day, Rhema was off her game and did actually sleep for a few minutes. She was quite disgusted with herself when she woke up.

But back to this week’s sleep deprived EEG. I called the kind folks over at Children’s and explained that Rhema is quite used to being up all night and then going through a full day of school (including an hour long bus ride each way) and after-school therapy without so much as a yawn.

It would be better to do the standard 24- or 48- hour EEG in the hospital – this is what we usually do – because she will sleep at some point in that period of time.

But the epilepsy floor is currently filled and we’d have to wait several more weeks for a bed to free up.

“I understand. I’m just worried she won’t sleep for the EEG Tuesday morning.” I said.

“We’ll try our best,” the woman on the phone said.

So there it is. All-nighter tonight. EEG in the morn.

As my blogging buddy Tiredmama would say, To sleep or not to sleep, that is the question.

(We actually really need her to sleep during the EEG, so that her doctor can determine whether her anti-seizure med is still working. Ideally, those beautiful brown eyes will close once the 32nd electrode is glued to her scalp.)

Anyone wanna bet me a pizza?

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
“Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.” John 9:1-3

When Rhema was 2.5 years old, she was diagnosed with a rare epilepsy. (An official autism diagnosis had come a few months earlier).

After the shock wore off, I actually felt a little excited. It seemed that we had found the true culprit in the LKS. This was the reason she wasn’t speaking. Her doctor believed that if we could control the epilepsy with drugs, she would acquire language. (What he failed to mention is that LKS is notoriously hard to treat). He even suggested that she did not have autism – that the aphasia and all the behaviors we were seeing were in fact the result of the seizure disorder.

I dared to believe him. I let myself believe that she just might be cured by a magic anti-seizure pill.

We called family and friends to share the good-bad news. I sent out a prayer alert to people I hadn’t spoken to in years. I was so hopeful. I had dreams of conversations she, my oldest girl, and I would share. It was hard to imagine, but I envisioned her present, with me, those gorgeous eyes gazing into mine. I imagined the clever things she’d say. I imagined learning all about her, her personality, her likes and dislikes.

Weeks later, Brandon and I were watching the news on TV. A story came on about an autism school in Massachusetts. Oddly enough, the three students profiled in the story all had seizure disorders. As I watched the children intently, I realized then that my Rhema would fall into the “severely impacted” and “low-functioning” category. I suddenly realized that we would struggle for a long time.

I choked out, “This seizure diagnosis doesn’t mean that she doesn’t have autism. It just means that she has really bad autism.”

I wept.

That moment, that realization was far more painful for me than when I first heard the words, “Your daughter has autism.”

I rarely cry openly, and so when I do, it tends to alarm my dear husband. I’m not even sure he understood my blubbering through my tears. But I remember him saying, “Let’s pray.” And I remember us sitting together on our old futon beseeching the God of heaven to heal our precious girl. We did not ask for comfort or strength; we just desperately needed her to get better.

That was three years ago.

Knowing what I know now… if I could go back to heartbroken me on the futon that night, I would say-

~You’re right, you will struggle for a long time. But this struggle will force you to the One who is sovereign.

~You’re right, you will see miracles.

~But not always like you think. Instead, they will be more significant, more amazing than you could ever imagine.

~Your days as her mother will be the greatest and hardest days of your life.

~Don’t be afraid to follow your instincts, your gut, no matter what doctors or teachers say.

~You will learn to trust and enjoy God, even when your prayers go unanswered… when your circumstances don’t change. That, my dear, is the beautiful faith.

~You will be “low-functioning” at times; and it will crush you over and over again, but will keep you humble.

~You will be “severely impacted” by autism and by a God who teaches you to listen with your heart.

~Her life will be like a song, a sweet devotion…

~Words will come, words will go. But the Word of the Lord stands forever.

Hope has severe food allergies. So I was glad to make it through the Halloween hype and abundance of chocolatey, nutty candy without a trip to the emergency room.

We’ve had a string of infractions lately that have added a few more gray hairs. Talk about learning to trust God with my children…

Hope had allergic reactions to my breastmilk

Every time I leave her in the care of others, prayers are whispered that she will be safe.

Last week, I got a call from her nursery school: “We were tracing letters of the alphabet in flour and….” Ugh, I already knew what was coming.

Then today I got a call from the school where Hope is a peer model: “She ate another child’s chicken nugget and instantly broke out in hives around her mouth…”

In her almost 3 years of life, Hope has been sickened enough times by touching/eating a forbidden food to know better than to just put anything in her mouth. She has learned to be very careful, to question foods that are unfamiliar. When asked, she can list ‘nuts, eggs, dairy, wheat, soy and sometimes corn’ as the foods she’s allergic to. So I was surprised to hear that she had eaten a chicken nugget without hesitation.

When I got to the school to pick her up, my friend Dawn told me that Hope has the same lunch bag as another child’s. Their bags got mixed up and Hope ended up eating the nugget. I understood the mix-up, but was still confused. When I saw Hope, I asked her what happened. (At this point she’d already received a good dose of Benadryl and was doing fine. Thankfully there was nothing in the nugget that would cause anaphylaxis.)

She said sadly, “I thought it was my surprise. I thought I wasn’t allergic anymore.”

Oh.

On school days, I always pack a “surprise” in her lunch.

She is such a good sport. I learn a lesson from her every time I watch her at a birthday party. While other children enjoy pizza, cake and ice-cream without a second thought, she is content to eat her rice and gluten-free pretzels. There have been times when I have wanted to utter a “Woe is me” on her behalf. But she never complains, never compares, she’s just happy to be there.

“Hope, baby,” I said. ”You’re still allergic.”

Her head was down, but I could see the worry in her eyes.

“I’m not mad, honey. We’ll go home and Mommy will make some of your special nuggets and we’ll watch Strawberry Shortcake. O.K.?”

Then a grin popped onto her face,

“Well, Praise the Lord!” she declared.

Children’s Hospital Boston recently published an article on Fighting Food Allergies.

For the past two months women from the church have faithfully shown up on my doorstep to offer their help. Every Saturday, one or two women set aside a few hours just to spend time with me and the girls, assisting in any way they can.

I am very blessed, yes?

Note: If you are ever reluctant to attend church because you have a special needs child, think of me. Sunday mornings are always an adventure, but my family has been totally embraced at church. People genuinely care about Rhema; they try to understand her and meet her needs. I never imagined I could find such a supportive, loving community.

Anyway. Yesterday, a woman whom I recognized but had never met before came to help.

I suggested we walk to a new playground. Normally I would just drive, particularly because Rhema is in a squat-walk phase (she takes a couple steps and then squats, takes a couple steps, then squats). But it was such a beautiful, warm fall day, and I had an extra helping hand, so we decided to walk.

The walk took a looonnngg time with Rhema squat-walking the whole way, but we finally made it to the playground. I was glad for the adult company and the chance to get to know a new friend. I was happy to tell her more about Rhema and how her autism affects her. She was great with Rhema and did not hesitate to try and engage her, which I truly appreciated.

Rhema squealed and ran around the playground while R and I chatted.

Then I looked up and saw Rhema near a slide and her pants were down, her creamy bare bottom a contrast to the autumn leaves.

Uh oh.

I sprinted over to her with my new friend right behind me.

“Pants on,” I said a little too cheerfully as I quickly slid her pants back up.

Rhema stuck her hand in the back of her pants and dug around. I pulled her hand out, but she stuck it back in. I pulled it out, she stuck it back in. Starting to feel eyes on us, I yanked her hand out again.

Finally, she acquiesced. Round 1 to mama.

Then, with her fingers on the outside, she started slowly working something down her pant leg, intending for it to fall out the bottom.

“Oh!” my friend said. “She must have put some pebbles in her pants and needs to get them out!”

Um, yeah. Sure. O.K.

I knew the truth, but oh, I hoped I was wrong.

There we stood, by the slide, waiting expectantly as Rhema worked the “pebbles” down her pant legs to her socks. One by one, they rolled out onto the new playground turf.

We bent over to inspect them and then got hit in the face with a bad odor.

They were the smelliest pebbles we’d ever seen.

“[This is the story] of a woman’s devotion to the child who is both her burden and God’s singular way of smiling on her…” Jewel, Bret Lott

I recall reading in Susan Senator’s book Making Peace with Autism about going through periods of crisis with your child, and how some crises can be so difficult that there’s nothing to do but hold on for dear life and wait for the storm to pass. I feel like we’ve been in a crisis like that.

My girl has gone through a dreaded regression and has been exhibiting behaviors even extreme for her. She seems to have lost all toilet-training. She’s up all night doing her up-all-night antics of yelling, crashing, banging, humming, breaking down her bed. She’s been very hyperactive, a tornado, out of control. She’s picked up a new hobby of eating things that, well, you just don’t eat. She’s stripping. She’s been harder to engage than ever, prompting her beloved therapist T to say “this is the worst she’s ever been.”

I’ve been in a haze just trying to hold on to patience and keep up with all the messes and bathroom accidents all over the house. (No use putting on a diaper, she rips them to shreds). When I complained to my friend Carrie that I’d been destined to a life of poo-cleaning, she reminded me of Jesus washing the smelly, dusty, cracked feet of his disciples – how He humbled himself to clean their filth. It may sound funny, but it’s given a little purpose to my days. To think that I’m serving Rhema in love, but more importantly that I’m serving Him as I care for her. Let my lifesong (everything I do) – even this – sing to you, Lord.

I’ve always been confident in my ability to figure out what’s going on with her. When her sub-clinical seizures returned last spring, I knew. This time around I was unsure. Her doctor (and others) suggested that the sudden increase in behaviors was due to Brandon’s absence. While I agreed that that was certainly part of it, I just couldn’t believe that was all to the story. I was concerned that the seizures had returned or her medication was making her crazy.

Finally, yesterday her doctor agreed that something must be done. We increased her anti-seizure med – this will either calm her somewhat or make her more hyperactive. Her doctor is also scheduling her for another overnight EEG in the hospital.

Last night after the medication change, we finally all slept. In fact, we overslept. And it felt GREAT! (Amazing what a good night of sleep can do.)

It remains to be seen whether the crisis is over, but I’ve got my second wind. I know we’ll make it.