Just an update

Thank you for the well wishes for Rhema’s tests last week. She was a superstar. She didn’t like skipping breakfast for two days but she went along with it. She obliged us and did the x-rays and even drank a whole cup of barium – yes, she did! – (by way of a 5 ml syringe… it took a long time). But we all have things in life we just will not do. For me, I won’t ever participate in a hot dog eating contest or share my cupcake or bungee jump off the Empire State Building. For Rhema, she will not will not will not lie down on a hospital bed (or examining table). Fuggedaboutit. So that meant we had to get creative, and B and I got to put on scrubs and those cloth hat thingys and go into the OR to help put her to “sleep”.

We’re still awaiting some test results. One thing was confirmed: the kid is super constipated. She takes Ex-lax and Miralax daily and has done so for months. But she’s still constipated, and it may be the biggest reason she’s tossing her cookies all the time. Her gastro said, “Her abdomen is distended, her stomach is not emptying, and she’s just run out of real estate in there. Rhema is one of several patients with autism that I’ve seen with chronic constipation and poor gut motility. I think there’s much for us to learn when it comes to kids with autism and GI issues.”  Yep.

 We did this about 438 times.

“I’m a macho man.” 

Just cute.

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 to 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.

The whole first grade

We’ve been waiting for weeks for Brandon’s official orders to come for his deployment. I’d heard about a number of people who thought they were deploying and then later found out they were not. So I started thinking/hoping Brandon would not have to go because we hadn’t received the orders.

Well, we finally got “the word”.

The good news is he doesn’t have to go until July. The bad news is he has to go in July.

It was time to tell the girls.

We’ve been particularly concerned about how Hope would handle the news. This is the girl who tries to barricade the door when loved ones leave.

 

Brandon sat her down and told her, and surprisingly she was… fine. She talked about his homecoming after the last deployment and how she wore a bunny costume that day. She said she’d miss their stinky pants fights. (Yes, that’s a game in which they pelt each other with stinky pants, a game in which Mommy does not participate).

Finally she simply asked, “When are you leaving?”

“In a couple months.”

“I’ll miss you, Daddy.”

She hugged his neck and ran up the stairs to brush her teeth.

I looked at him. “Well, that went well.

“Yeah,” he laughed. “She didn’t seem too broken up about it.”

But as I helped her get ready for bed I watched her face grow troubled and sad as the news sank in.

By the time we tucked her in she was almost angry.

“I don’t want you to go! A year is too long. A year is all the way from now until a few days after Christmas!”

It took a minute to realize she was equating New Year’s Day with a year.

“Babe, Daddy will be gone from July to July. That’s a year.”

She looked at me trying to imagine it.

I blabbed on, “You’ll finish kindergarten, and then it will be summer right? So Daddy will be gone from this summer to next summer. He’ll miss the whole first grade. And-”

The pained, horrified look on her face stopped me in my tracks. I turned and saw the same pained, horrified look on his face.

Later I thought about it and I knew what I said was wrong. So I told her as soon as she woke up,

“Daddy won’t miss the whole first grade, Hope. We’ll take pictures and talk on the phone and skype and tell him all the juicy details. He won’t be here here, but he’ll be here.”

“Yeah, I know Mom. It’s kind of like God. Sometimes I don’t see him, but I know he’s with me.”

*

Good

Last week Rhema’s eyelid started swelling.

“It looks like a stye,” I said, unconcerned.

By Wednesday morning her eye was nearly swollen shut, and I got worried. I cancelled my plans for the day, and by the time we rushed into the doctor’s office I’d already googled Grave’s disease and eyeball tumors.

“It looks like a stye,” the doctor said, unconcerned.

I breathed a sigh of relief and felt a little silly.

“Yes, that’s what I thought. It’s just that… she can’t tell me what hurts, and well you always wonder and worry if something might be wrong, something you can’t see. She has a really high threshold for pain so I might not know there’s a problem until it’s too late. One time she had a UTI and it took me forever to figure it out…”

The doctor looked at me thoughtfully as if imagining herself in my position.

“Yes, I can see how that would be hard.”

She attempted to give Rhema a more thorough exam. But when asked to get on the examining table Rhema gripped the edges of her chair and would not budge. I tried holding her arms down while the doctor looked into her ears but that quickly turned into a shrieking fit and a wrestling match. Rhema really wanted to be helpful, but she was just too frightened and uncomfortable.

I tried not to feel frustrated. How can we make sure everything is ok if you never let the doctor examine you, little one?

“Apply warm compresses to the eye for 15 minutes at a time. I’m prescribing eye drops that you’ll need to give her 4 times a day.”

I stared at her, opened my mouth to say something then shut it.

She smiled and said goodbye. Appointment done in a matter of minutes. Rhema was psyched.

I zipped her jacket and studied her face.

Sighing I asked, “Rhema, how are you??”

Her teachers at school have taught her to respond to this question. I know she has only one glorious answer, and I needed to hear it and trust it. She looked off into the distance, but when she said it her voice was so sweet:

“Gu-!”

“Yes. Good. You are good, aren’t you?”

On the way out I texted Brandon: “Just a big ol’ stye. Dr. prescribed warm compresses and eye drops.”

I couldn’t help but giggle at his response: “Oh good… that will be easy.”

Yeah.

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.