Graphs and anchors

We’ve had even more than our usual a-lot-going-on, and I haven’t been able to blog. I’ve also felt a need to keep silent here as friends are grieving losses, others are hurting deeply, and me too – I’m trying to find a way above my own challenges. I was looking at one of Rhema’s graphs – I get a set every month from school. Some of them are behavior graphs that chart things like flopping, bolting, successful transitions. As I looked at the ups and downs it reminded me of life, and something I read once by a favorite singer (Sara Groves):

“I made a map of my life on my 40th birthday, and remembered in broad strokes the first 20 years of my life, and then the second.  Drawn out in a sort of graph, I was amazed that there was rarely just one monolithic line, plummeting and rising, but that in the darker hours, there was almost always a counter-rise – this hard thing was happening, but at the same time, this other (sometimes completely unrelated) wonderful thing was happening.  Coming-of-age vulnerability alongside finding genuine, life-giving mentors, young adult angst alongside finding a voice, marriage joy alongside marriage pain, birth alongside depression, tearing relational missteps alongside burgeoning life-long friendships, sin and self alongside truly breathtaking revelations of grace.”

Anyway, I am thankful for the falling and rising and His grace at “each turn in the line.”

Trying to lay it all down at His feet.

 

Reblogging this, originally written November 2011.

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My little Hope and I go down to the boat ramp just to watch the vessels on the water.

I want her to know what real hope looks like. Not just a wish or fancy, but an abiding, unshakeable expectation.

It’s peaceful just now, though wind and tide have rocked the boat.

I know of storms raging

family without power

homeless men in the subway

heartache of friends

screaming

pressures at work

babies battling cancer

a beloved aunt in her last days

I know of chaos and confusion, weakness and regret.

We should surely sink.

And yet we are held fast.

I read aloud to her the passage from my morning study – shared with a dozen women in a circle huddled over Bibles, in their own storms:

“We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, where our forerunner, Jesus, has entered on our behalf.” Heb. 6:19-20

In the stillness I ask her,

“You know what an anchor is, right?”

“Yeah, it keeps the boat from going away.”

A pause.

“But Mama, what’s our soul?”

“It’s like the deepest part inside you. Everything you think and feel and know and makes you you. With God, our souls have an anchor.”

“Like the boat.”

“Like the boat. Hope keeps our souls from going away.”

It’s my day off from work and I cherish our time together – we talk and talk and talk and eat McDonalds, bounce around the gym and practice for piano. We pick up a happy Rhema from school. She’s had some tough days lately, but when I put her to bed she thrills me unexpectedly with a beautifully clear “night night” and “luh yew” (love you).  I seriously kick up my heels as I close her door – no medical report or school evaluation or future fear can steal the joy from the moment. And then the husband refuses to be lazy about me. He fights the weariness and frustrations of the day and all the words unspoken; he finds new ways to connect and I know I am loved.

It’s the hope of heaven. It’s God’s good gifts I’m counting in the wind. All of it, anchoring.

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Photo credit: http://www.diy-boats.com/2010/how-to-successfully-anchor-your-boat/

Honey in the Rock

“When my heart is overwhelmed; lead me to the Rock that is higher than I.” ~Ps. 61:2

Most of us know what it is to be overwhelmed in heart; emptied as when a man wipeth a dish and turneth it upside down; submerged and thrown on our beam ends like a vessel mastered by the storm. Discoveries of inward corruption will do this… Disappointments and heart-breaks will do this when billow after billow rolls over us, and we are like a broken shell hurled to and fro by the surf. Blessed be God, at such seasons we are not without an all-sufficient solace, our God is the harbour of weather-beaten sails, the hospice of forlorn pilgrims. Higher than we are is He, His mercy higher than our sins, His love higher than our thoughts. It is pitiful to see men putting their trust in something lower than themselves; but our confidence is fixed upon an exceeding high and glorious Lord. ~Charles Spurgeon

Anticipating a storm, I entered the week with an overwhelmed, wayward heart. Somehow I’ve found myself in the shelter of the high Rock. Grace. And strength, refuge, provision, truths retold, and unexpected joys found there. Thank you, Lord.

Some sweet honey in the Rock:

(The following text messages are between my friend Dana and I. Dana babysits the girls for me on my long work days.)

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The bubble gum slush puppie

It might not be rain falling on your head this morning. It might be heart bits again, because mine shot up in the air and burst like fireworks.

At gymnastics this weekend the Special Olympics team sat in the warm-up circle and each girl said her name and favorite dessert. Rhema sat in the circle with the help of her coach Shea, and Hope and I stood off to the side. When it was Rhema’s turn to say her name, Hope went over to the circle and sat next to her. She put her hands to Rhema’s face and asked, “Rhema, what’s your name?” I think Rhema said her name but it was only for Hope to hear and know. After a few moments Hope told the group, “This is Rhema and her favorite dessert is…um… slush!”

When the team went into another section of the gym Hope and I retreated to the lobby area, where wouldn’t you know it, slush was for sale. Yeah, Hope’s so stinkin’ cute she got a Bubble gum slush out of me. And being the sister she is, she saved some for Rhema and gave it to her when the practice was over.

Rhema eagerly slurped as we crossed the parking lot and buckled in. She grabbed her iPad and the automated voice from her communication app filled the car, “I want… something to eat… slush. I want slush.”

“Oh my gosh!” I screamed.

“Oh my gosh!” Hope squealed.

“I want slush. I want slush. I want slush. I want slush.”

She already had the slush. She was not making a request. It just so happens that currently her screens are somewhat limited to only making requests. Except for a few rare occasions all of Rhema’s language – vocal or through the iPad – has been prompted and repetitive, based on requesting a food item or activity. (This has been so important in her learning.) But in the car, I think for the first time ever, she was commenting. She was independently sharing with us: I have slush, (and yes Hope) I like it!

The old reports said things like,“Poor receptive language. “Word deafness” possibly due to seizure activity in the brain. Poor expressive language. Zero joint attention. Child does not ask for help or make other basic requests. Child has limited ability to share interest or enjoyment with others.”

And now. She can – and desires to! – put words and pictures together to make a statement about slush, just for the sake of saying it!

Stay here with me for a moment because I don’t ever want to let it go. This is a piece of everything I’ve prayed for and been afraid to dream of. This is God surprising us with joy. This is hope I can’t describe, hand-delivered to a mama’s heart in desperate need of it. This is another light shining into my girl, who sees and hears and thinks and understands so much. This is we’ve-come-so-far and we’ve got a ways to go, so keep the faith and hold on.

When God gave me Rhema I didn’t know I would get to write of miracles.

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O LORD my God, I cried to You for help, and You healed me. ~Psalm 30:2

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North Shore glory

Dear Child,

Tears have a language all their own. I keep track of all your sorrows, and collect your tears in my bottle*. Please, precious girl, don’t hurt yourself.

Come away with me. Let me show you. Won’t you come to the waters?

Take my hand and walk with me.

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Shhh. Be speechless. Hear the applause of the gulls on high.

Let the rhythm of waves beating the shore, crashing over rocks and rolling back again fill you with comfort and strength.

Breathe in salty smell way down to your toes. Laugh at the taste of the cool spray. Feel the warmth across your face and let your spirits rise on bellowing winds.

“Oh the deep, deep love of Jesus
Vast, unmeasured, boundless, free
Rolling as a mighty ocean
In its fullness over me”

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“Underneath me, all around me
Is the current of Your love…”

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“Oh the deep, deep love of Jesus
Far surpassing all the rest
It’s an ocean full of blessing
In the midst of every test…”

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You’ll never be able to take in the whole of the glorious horizon. All of this, a concert of praise: Great are you, Lord.

But open your eyes, little one, and believe more than you ever have before. Open your eyes and see this sparkling majesty. See you how big I love you.

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“Oh the deep, deep love of Jesus
Mighty Savior, precious Friend

You will bring us home to glory
Where Your love will never end.”

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*Psalm 56:8

**Note: These pictures (which cannot begin to tell it all) were taken near my dear friend’s Esther’s home. And she reminded me of the hymn O the Deep Deep Love of Jesus. Rhema had become upset in the car and was crying, screaming and pulling our her hair. I begged her to walk along the coast with me and breathe in the beauty and find her calm. And then I realized God wanted us both to.

Still good

She’d heard the long hushed conversations. She’d caught me brush away a tear. She’d prayed with me every night for her aunt (my twin). Finally she asked,

“What is MS anyway?”

I put her off. “I’ll tell you when you’re older.”

“You and Daddy seem to do this a lot. I ask a question and you always say you’ll tell me when I’m older. But I want to know a lot of stuff now. I’m seven years old!”

I smiled. “Oh, my Hope. Ok. So. Our bodies have things called nerves. Think of a nerve like the cable we use to charge Rhema’s iPad. Nerves carry messages from the brain to other parts of the body – like your eyes and your elbows and your feet – and tell them what to do. Cool, right? And we have a ton of nerves in our body. When you have MS the lining that covers the nerves gets damaged and forms lots of scars. It makes it hard for the brain to get messages to other parts of the body. So sometimes people with MS have trouble seeing or walking or using their hands and other stuff.”

“But then they take medicine and it goes away.”

“Well, no. There are medicines that might help them feel better. But… there is no medicine that will make this go away.”

I watched the understanding sink in and saw my fears mirrored back as she thought of her beloved aunt, and her eyes filled.

I hurried on, “But isn’t it so cool how our brains are like computers? I’m holding this cup right now and I’m looking at you and breathing and thinking and talking and there is so much, Hope, a million miraculous things going on inside me to make that happen-”

And then she said something she’s heard and said many times and come to believe,

“God is good all the time.”

The moment I knew Rhema had autism I called my sister. She listened and cried and prayed with me and comforted me. Then she hung up the phone and went to the emergency room because she had no feeling in her legs. That same day she was diagnosed with MS. Since then, eight years ago, my greatest fears in life have centered around my daughter and my sister.

The mind is very good at imagining disastrous endings. Still, all along I have made a choice to believe that God will care for them, even better than me. But a series of seemingly unfavorable events in recent weeks forced me to ask “What if God doesn’t come through?”, “What if my deepest fears one day are realized?” And there was an earthquake because everything around me seemed to come crashing down and I was shaken to the core.

But Hope was waiting. I was supposed to say it back in reverse. It’s an old Don Moen song, and they say it in the church I grew up in in a call and response style, “God is good all the time…”

This is silly, I thought. I don’t have to say it. I’m angry. I’m lost. I’ve never been so scared.

But Hope was waiting.

“All the time God is good.”

I mumble-whispered it. Because trusting still sits well with my soul.

Saying the words forced me to remember what is true, and this is true: The Maker of brains and voices and myelin sheaths and fingers and feet is good. And His mercy and goodness follow me, follow my sister, follow my Rhema and Hope and Brandon, all the moments of the days of our lives. Never once has there been a lapse in His goodness. He walks besides us all the way.

Endings, yes. But not disastrous when you have the hope of heaven where there will be no more disability, pain, sickness and sorrow. Some call it all a crutch or Santa Claus. For us it is “hope maketh not ashamed.”

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“Though I may not understand
All the plans you have for me
My life is in your hands
And through the eyes of faint
I can clearly see that
God is good all the time.”
~Don Moen

Real strength

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When people hear some of the current details of our lives– husband/father deployed for a year, two children… one with autism and significant needs, one with fifty million food allergies (ok, I exaggerate), me trying to hold down the fort and keep up with a demanding job in the city – they will often say something like “I don’t know how you do it” or “You are a strong person”. I smile at kind comments like “You make it look easy” because they haven’t seen my house or car and they’re probably overlooking the massive circles under my eyes or the snot-spaghetti sauce combo in my kid’s hair.

There have been times when I’ve just said thank you. But it’s disingenuous.

Because… it’s not me. It’s all God.

Truly, friends. I am so not strong. But He is our strength and song. And I know long time readers are used to me rambling on about God and faith and all that. But these are not just words or me trying to be humble. Without the Lord’s grace and help and mercy I would surely fall. And even when I stumble the Lord upholds me with His hand. It’s only because of Him that I can get up in the morning and face the day with hope and peace.

Some of His good gifts strengthening me now: a shared laugh with husband on the phone, a Rhema smile and a Hope story, friendship, sisterhood, food that fills, warm home and beautiful babies resting upstairs (long eyelashes on cheeks), His promised presence.

It’s extravagant provision. It’s head lifter. It’s burden light. It’s how He does it.

He is so good to me, so good to us.

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* G won last week’s book giveaway!

These days

I have nothing profound to say, but I do have cute stories to share.

For a full week Rhema could not sleep. Instead she screamed and shrieked for hours on end. Each night I thought to myself, surely she will finally rest and we will all get some sleep. But no.

Then one evening last week Hope yelled from the bathroom:

MOMMY!!! I found a big fat tooth on the floor. And it’s NOT mine!”

She raced down the stairs and I confirmed that it indeed was a bloody molar.

We ran to Rhema. “You lost a tooth!! You lost a tooth!!!” Rhema looked at us, bored out of her mind. I showed her the tooth. She took it and headed toward the trash can. I stopped her just before she tossed it in the garbage. Hope, on the other hand, was beside herself with excitement that the Tooth Fairy would be making an appearance that night. The Tooth Fairy was thinking Oh shoot, I’m broke.

Rhema slept through the night and several nights after that. Days later I had an Aha! moment. I remembered that during the sleepless nights I’d often find her in the bathroom at 1 or 2 am trying to brush her teeth. Maybe she’d been experiencing tooth pain all those nights?? And I just did not know, did not put the pieces together. I did not know she had a loose tooth, and I didn’t even know when she lost it. Sometimes it’s scary to think of all the things that I might be missing… and sad to think there are things, so many things, she’s never been able to tell. I’m trying to be ok with it. As her mother I’m supposed to know, I want to know. I’m trying to trust that God knows, and that’s enough.

Anyway Hope left a note for the Tooth Fairy explaining everything:

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(Yes, Hope always, always has her sister’s back).

Which leads me to the History Fair. Hope got to do a project on Rosa Parks and she worked on it for weeks. She asked me to make cookies in the shapes of busses for the night of the Fair. It felt a little irreverent to me but I bought a bus-shaped cookie cutter. Then she eagerly asked me to draw little chocolate Rosa Parks on the busses. And I said noooooo.

When Hope learned that Rosa Parks was the first woman to lie in state in the Capitol Rotunda, she decided she wanted her diorama for the History Fair to depict this. She built a little coffin and put one of her brown-skinned dolls on top. She made a flower arrangement out of Rainbow Loom bands. She drew lots of people standing around looking sad. I suggested it was a little morbid, but there was no deterring her. On the night of the fair, she brought Ms. Rosa Parks to life. She was awesome.

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Hope as Rosa Parks

So go these days with my frizzy haired girls. I am often exhausted and overwhelmed and buoyed by tender moments with both of them every day. The house is filled with their songs. For Hope it’s an old Vacation Bible School tune or her piano music or every song (on repeat) from the movie Frozen. For Rhema, it’s her continuous soft hums. (Thank you, by the way, for your kind words about Rhema’s voice. I’ve always thought it was beautiful, but I’m her mom so I’m biased. Your comments helped me enjoy her songs even more and I feel special I get to hear them every day).

In a devotional I’m reading by Sarah Young the following words went right into my heart:

Listen to the love song that I am continually singing to you. I take great delight in you. I rejoice over you with singing… Trust me and don’t be afraid, for I am your Strength and Song.

The Lord, the Lord, is my strength and my song; he has become my salvation. ~Isaiah 12:2

Extra participant at the IEP

Well, it’s that time again. Rhema’s IEP meeting is this week. Crazy to think we’ve been doing this since she was three years old and now she’s almost ten! Brandon will Skype in for the meeting as he’s done in previous years when he’s deployed. But there will be someone else with a seat at the table…

(Originally published February 2012)

“Even now my witness is in heaven; my advocate is on high.”
~ Job 16:19

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We head into Rhema’s IEP meeting in a couple hours.

I am not anxious.

Perhaps it’s because we know our girl is right where she needs to be. And I’m confident that her school placement will remain as is for another year. Perhaps it’s because we trust her team of teachers and therapists completely.

Still, there’s such emotion attached to the IEP meeting – something I cannot really articulate. The lump in the throat. The pit in the stomach. The shock that I’m still shocked that we’re even there. And that the child we’re talking about so intently is my little girl, my Rhema.

I can never walk into one IEP meeting, without thinking of all the meetings in the past…

I’ll never forget the day we met with the local school district to discuss Rhema’s academic setting.

“I thought I was totally prepared for this,” I said on the phone to my mother before the meeting. “But now I think we should have hired an advocate. Someone who understands it all better than I do and will speak for us when we can’t, and stand in our place. We need someone in the know to represent Rhema’s best interests.”

My mother, a retired special education teacher who’d participated in a bajillion IEP meetings during her career, said simply,

“You do have an Advocate.”

When we arrived at the meeting, the Out of District Coordinator had just finished observing Rhema in her substantially separate pre-school classroom. She shared testing results with us, noting that they’d been largely unsuccessful in conducting any testing with Rhema.

I began making my case for why we believed our 3-year old little girl needed to be outplaced – in a school specifically for children with special needs. We’d visited a number of schools, and honestly I’d been scared to death. Most of the students were in their teens and their autism – their need for support – had startled me. At the time, the last thing in the world I wanted to do was send my baby off to a private autism school. But I knew it’s what she needed, I knew she was drowning in her current school setting.

So I stuffed down my fears, put on my Mama Bear face and detailed our concerns about the current program and what we needed to do for Rhema. But the Special Ed Administrator was distracted. I realized she was looking past me. I stopped mid-sentence and turned around to see my husband beside me, dressed in his ACU’s (Army Combat Uniform), quietly crying.

I don’t know what happened after that. I was struck by Brandon’s heartache; fathers hurt, too. The tone in the room changed, like someone had injected tenderness and cooperation into the air, and I knew then for sure that God would take care of us.

By day’s end, the school administration was completely on board with the plan to move Rhema to our school of choice. And again, a couple years later, they supported her move to the wonderful autism school she now attends.

So as we head into today’s IEP, I know we’ll talk about Rhema, her beautiful personality, and our vision for her. I know we’ll celebrate her accomplishments over the past year – she has come so far! I know we’ll examine the areas in which she struggles and strategies to help her overcome those challenges. I know we’ll discuss in depth, the plans and goals for the next year. I will be excited about the new programs and new skills she’ll learn… I have every confidence she will succeed in her own Rhema way. I will try not to be sad that she still can’t do x, y, and z, and that there has to be such an elaborate plan to help her learn.

And call me crazy but I will look over at the empty chair at the table, and know that even as our hearts hurt a little, we are not alone. The Advocate will be there.

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***A Book Giveaway***
Chicken Soup’s “The Multitasking Mom’s Survival Guide” is in bookstores today. I’ve got a funny story in it. In fact the whole book generates a lot of laughs and “I’ve-so-been-there” head nods. Leave a comment and we’ll draw a name!

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Care plan

Before Rhema’s surgery on Tuesday I worked with a Child Life Specialist at the hospital to develop an Autism Care Plan. The Plan is designed to help medical staff address the unique non-medical needs of patients with autism such as communication methods, environmental adaptations, and sensory preferences. The goal is to make the hospital experience as comfortable as possible whether it’s speaking softly or changing the lighting in the room or providing weighted blankets.

Rhema’s Plan was very detailed and I actually felt excited to see it in action. I knew that her Plan had been attached to her medical record but I was amazed to find that every nurse and doctor we worked with had really read the Plan! They understood that Rhema is absolutely offended by hospital beds – she’s had one too many EEGs and there’s no way in the world she will sit or lie down one. So they removed the bed before we got to the pre-op room. Also, the nurses knew not to attempt getting a blood pressure while she was still awake.

They had an iPad ready to go with her favorite games and a Jazz station cued on Pandora to help her through the waiting period. There were coloring supplies and fidget toys. To help prepare her for getting a mask on her face, the Child Life Specialist coated the inside of the mask with cotton candy flavored chapstick and Rhema was intrigued and put the mask to her face several times!

I was able to be with her in the OR until she went to sleep. I held her (or tried to) while they put the mask on – of course she put up a good fight – she tried to run straight out the door.

Later in the recovery room she woke up slowly, humming.

A recovery nurse told me, “I’ve been doing this a long time. I don’t think I’ve ever had a child come out of anesthesia singing. She has a lovely voice.”

“I get to hear her song every day,” I said, feeling like the luckiest mother in the world.

I’ve been clinging hard to the Truth that my God has a care plan. Sounds simple, but it’s so hard to believe. I mean, really believe. We go from crisis to crisis and sometimes it seems the stream of problems will never let up. We are troubled on every side. But like Rhema when she’s got an ink pen clutched in her hand (about to color the world) and there’s no prying it out, we can hold on to this:

“For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.” ~Jer. 29:11

He’s got this. He loves us and knows us, every little detail – down to the number of hairs on our head. He sits with us in the waiting. Surrounds us with help and encouragement. Prepares our hearts for what lies ahead. Holds us to the end.

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My heartfelt thanks to the staff at Mass General. And deepest gratitude for family and friends who send prayers and support (…and pizza and casseroles and McDonalds gift certificates. ;-) ) Thank you.

A Story by Rhema

Dear child,

Tell me a story of you.

Let the first verse be about who you are. What you think about you, and how it feels inside. What your deep eyes see when they gaze at the snow, the sun, the ocean, marker colors on paper. What you hear when you play the music over and over and over. How you feel when Hope’s love and laughter surrounds you. How you feel when my cheek touches yours? What do you love, my love?

May your chorus be only the things that make that you giggle silly. The ones that bring out your secret smile (oh, you light up my life!). The thoughts that make you rock and raise your fingertips as if you might fly. Oh, tell me what it is that makes your heart beat and your eyes dance.

(I want to know, sweet child, so I can catch it and make it stay forever.)

In the second part, my darling, share with me The Hardest. Share with me.

Feel free to ad lib! Tell me everything I’ve never known. Favorite color? Favorite tune? Favorite activity in school? Your dreams. Things you can do but I’ve assumed you cannot? Why you color in circles. Why you hide your face. Why you only eat the dark brown multi-grain Cheerios.

May your chorus be only the things that make that you giggle silly. The ones that bring out your secret smile (oh, you light up my life!). The thoughts that make you rock and raise your fingertips as if you might fly. Oh, tell me what it is that makes your heart beat and your eyes dance.

Sweet child, tell me a story of you.

Listening with all my heart,

Mommy

(To hear the story you will need to listen closely).

“I want to trip inside your head, spend the day there…
to hear the things you haven’t said
and see what you might see…
the songs are in your eyes.” ~U2