Waiting in the room

 

 

The waiting room at the Children’s hospital was big, open, bright, and cold.  Even at 8:30 am, there was bustling- the ins and outs of people, young children hopping about to make the most of the unpredictable wait. The air conditioning polarized the air and I shivered in thought as we sat.

This journey has taken us down the road only nine years. There was a time when we  first heard ” autism” and it crippled our thoughts of a promising life. There was time when Goldi spoke in tongues or scripts. There was a time when in order to eat in peace, Goldi needed headphones. Time now for more of the unexpected and mysterious. How long before this gets easier?

My nerves were busy at work. How long the wait? I slid my hand up and down my arms trying to erase the permanent tattoo of goosebumps. I sighed deeply. This was the moment of true exposure.

Goldi giggled at the pestering of her younger brother, then took in all the action around her.

“Goldi” announced a voice from afar, “I am Miss Kelsey and I will be working with you today. ”

Her ID badge spelled out five titles. The tips of her stringy hair brushed her wrinkled collar.

“Right this way!”

Goldi was unsure of what this was all about. Unsure of what the four hours would demand of her.  It was test time. Testing all that Goldi knew. Her reading, her math, her IQ, her language, her problem solving, her attention, her memory, …….all about poking and prodding into her mind to see the Goldi she had become at the near age of nine. How long before Goldi shuts down and gives up this exercise?

The thought of it all pinned me to the chair. But  Goldi hopped up off and stood tall.

“Do you want to take a snack?” I asked.

“No,” she said assuredly. The double doors closed behind her and I was cued to wait.

Waiting equates itself with wonders and worries. Autism is such a puzzle.. Goldi’s growing up but truth remains – she has autism.  It’s evidence is so disheartening at times. With age, I had hoped and still do that she would look “cured”.   How long will it take? 

The first hour was fresh with people watching action. They helped distract me from my own story. A mother and her daughter had seated themselves close by. Mom sat touching distance from her daughter who was in a wheel chair.  The  teen looking girl looked vegetable like.  She stared cross eyed and distant, with only her breathing to distinct her from a statue.  She had a sleeveless shirt and her arms soon broke out in goosebumps as the cold showered her.

I imagined up their journey. There was a time when her mother learned that her daughter would be crippled of the “good life”. There was a time when she had to be trained to feed, bathe, and dress her. There was a time when she had to learn how to read her and know her the way she was– a vegetable. How long til these challenges push her over the edge? 

Suddenly, the young girl moaned. It was of medium volume  but loud enough to know she had a way to voice her mind Her mom first sat  unmoved. She moaned again this time loud enough to let it bounce off the walls. Again and again, she cried out. After such frequencies  I began to translate: “How long until we see who we need to see so we can get what we need?

Some of us froze in foolish stares.

Goldi’s brother asked “Why is she screaming?”

“She’s asking the same thing you are asking.” I answered. Brother pondered my words and maybe realized a connection even to someone so far from him.

We tried to ignore the “disturbance” with tic- tac- toe. But my eyes soon wandered over to watch again. Her mother  was gently pressing her face against her daughters. She kissed her forehead and whispered sweet nothings that seemed to massage  her whole being. Suddenly the girl smiled. Her eyes no longer cross eyed but  sparkled. She seemed to sit taller. There was peace and she was transformed.

I sat in warmth that took over shivers and worries.  In my wait, I saw the hands and feet of the One who loves us. The One who waits for us daily. The One who waits to transform us if we only cry out to Him.  At once I knew, that my wait was not, nor  never will be in vain.

Psalm 13

English Standard Version (ESV)

How Long, O Lord?

To the choirmaster. A Psalm of David.

 How long, O Lord? Will you forget me forever?
    How long will you hide your face from me?
 How long must I take counsel in my soul
    and have sorrow in my heart all the day?

 Consider and answer me, O Lord my God;
    light up my eyes, lest I sleep the sleep of death,

 But I have trusted in your steadfast love;
    my heart shall rejoice in your salvation.
I will sing to the Lord,
    because he has dealt bountifully with me.

 

 

 

 

 

 

Goldi on Stage

 

The world became her stage when I heard  two doll’s voices in English Accents coming out of her bedroom:

 “You cawnt my dear. It simply isn’t possible Princess Aurora!”

Well, try to control yourself Princess Cinderella, everything is going to be awl right!

Goldi considers the world her stage. It is a  ritual to rehearse in the “backstage” of her room first thing in the morning.  When guests come for dinner, the dessert proceeds an  impromptu performance of  Annie, Cinderella, Mary Poppins or some other newly invented story. There have been raging reviews  like ”That girl can sing. That girl can act.”

People are  just being nice. I thought. They have to say that because she’s autistic . They are being forgiving and compassionate.  It’s not like she’s Daryl Hannah or Susan Bowles. ( both have autism) Although even THEY they had to start somewhere.

She started with one week of Theater Camp  downtown.  I clasped her hand and guided her to the welcome area where all the theater teachers greeted us  with articulate projected voices  and exaggerated gestures. Feeling Goldi’s  heart beat reminded me that her nerves were in a tizzy  like mine.

Golidi waved goodbye  I was escorted to the waiting area where I experienced the nooks and crannies of theater life.  Directors sat going over call back lists.  Young ones passed through with heads held high and soon belted out some familiar Broadway numbers about Tomorrow and Music of the Night.  Real live Broadway actors  from the  production of Book of Mormon came promenading in ready to WOW some Broadway wanna bes with some “I made it big advice.”  I people watched and listened and  played the part of wall flower.

All the while, I wondered about Goldi . Would she be fine?   Maybe I should have just had the neighborhood kids act out some familiar fairy tale with an old sheet curtain? Is she standing on the stage scrunched up with tears flowing  not able to follow some blocking direction?

Lord, help her to find Your pleasure in doing this so that she might discover that this can be done for Your glory.

Suddenly a voice interrupts my wanderings of worry:

“Hi Mom! Know what? My part is  going to be Flies! Here is my script. I have to practice my lines and tomorrow I am going to stand on the real stage!

There is a quick scene change from city to country. Closer to home, I breathe a sigh of relief for more reasons than one. She had a good time and she was smiling at the prospect of tomorrow.

The Final Day of Camp was performance day. We are sitting up in the theater balcony for  Goldi’s big debut in Pirates Take Broadway. An off the beaten path story of which I am clueless about.  But at that moment it is about Goldi.

Lord, work in her Your power so that she can “Break a leg”. 

The opening number unfolds and out she comes singing and dancing in sync. She knew to move to the left or right. She knew to cross over and line up and raise her hands into the air .

A few scenes later,  Flies (Goldi)  comes out in costume.   She wore a flower ruffly dress and  clutched a clipboard.   Goldi had  nine lines.  Nine lines that meant  nothing to her as far as as sense or story. But she was determined to say them because she called herself “actress.” The other characters moved the scene along with their memorized, perfectly timed lines and then……..all eyes turned to Goldi …… for her first line.  She buried her face in her clipboard ( her cheat sheet) and …..a whisper floated out into silence…nine times.The scene progressed. The characters played on each other …..even Flies. The story unfolded as planned.

Lord,  help her to be who you made her to be despite autism so that others will know that you are greater and that you have overcome a world  that might throw tomatoes and reject her.

The finale: “I am a Pirate Broadway Baby”. There was stomping, stepping,  and gesturing and there was Goldi, singing in harmony with her feet and hands.  The bows at curtain call prompted enthusiastic applause.

Lord, if there is any success in this it is  because of You.  ­There is something great in her from YOU  waiting to come out .  Is this a gift you gave her? For some amazing purpose? 

In the comforts of  home, Goldi rehearses backstage in her room and watches other plays. Away from the lights, camera, and action, she watches her  filmed Pirate performance and her eyes are aglow with pride.

The  Pirates take Broadway strike is done. Right now, there is a sold out production of  Broadway musical Book of Mormon on that same stage. That same stage– that for a moment welcomed and housed a young autistic girl  who dreamed of being in a real play, in a real theater.  She gave it her all in pursuit of dreams come true.  Some may look at Flies and say    “exit stage left”.    But Goldi cares little about critics.

In faith, I think she knew something that a Producer or Director of the world’s stage would not. In faith,  Goldi was on stage- displaying a good work created in her. A gift from above  for some good greater purpose. Goldi was on stage. She played her role from start to finish and….. all because He put the good work in her…. all to show the Glory of God.   Goldi on stage may one day result in a standing ovation.

James 1:17-21  English Standard Version (ESV)

17 Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.[a] 18 Of his own will he brought us forth by the word of truth,that we should be a kind of firstfruits of his creatures.

Phillipians 1:6

And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ

 

 

 

 

 

 

 

 

 

 

 

Goldi is the Rainman

She is fair skinned, blond haired, and blue eyed.  He is olive toned with side burns. She spoke in tongues setting us in search of a good Speech Pathologist.  He was speaking like Encyclopedia Brown and sent us to the library in search of  books on how to recreate the Hoover Dam.

He has all the votes of a Congressmen wherever he goes. The birthday party invitations are already nearing the teens. Goldi’s number lags behind.

He’s been on roller skates, watched the action at the car wash with awe, and walked 5 miles for trick or treating treasures. For her, there’s a “dig my heels into the ground” excuse for any opportunity that knocks.

He knows she has autism. Probably even before we told him.  It seems with all his brilliance he’s had plenty of thinking time to come up with comments like:

“Just turn that autism part of your brain off. That way, no one will know you have it. ”

“Stop saying I have autism!” Goldi shouts back.

I’ve heard this  kind of talk before……..

Doctor: Raymond, do you know what autistic is?
Raymond: Yeah.
Doctor: You know that word?
Raymond: Yeah.
Doctor: Are you autistic?
Raymond: I don’t think so. No. Definitely no.

But then maybe he is able to “turn it off” for her.  When she’s  right in the middle of one of her “tanmelts”,  a word I  invented, because sometimes I can’t  distinguish  tantrum  from meltdown. Either she’s getting her way or she’s had it for the day or both.  I stand in blurry frustration mustering up energy to enter in stop the madness. But then…. he inches close and presses his nose against hers. She smiles and lets out a belly laugh.

He knows just like Charlie did:

Charlie: You know what I think, Ray? I think this autism is a bunch of BLEEP! Because you can’t tell me that you’re not in there somewhere!

At times, when I feel more like Grandma than Mom I freeze in the why’s and what ifs. When we are gone…..Will Goldi be all alone in some Group Home only to be visited by her Congressman / Celebrity brother during holidays? Will he one day as a man walk away free to live his own life in pure normalcy?

There’s plenty of reasons to walk away one day.  Sometimes, things are just not  fair.  We don’t make her eat lima beans. She gets to attend cool therapy sessions with toys and play equipment.  There would be no more embarrassment of her nonsense talk in public or some display some major social flop like picking her nose or sticking her hands down her pants or wearing the Pippi look or jumping up and down or flapping or still insisting on rocking her baby doll to sleep.

One day, he could be too busy for her because he’s working on some project for the city being an engineer and all. Or he’s running for Congress and there’s a campaign to build.  Or he’s got a soccer game to coach, or a lawn to mow.

“Where’s Goldi? he asks  one afternoon walking in from outside.

“She’s playing in her room.” I answer.

He tip toes in and I begin to hear jibber jabber. Some sort of invented language that I presumed only twins could speak.  Laughter bounces out.  Must have been an inside joke. Then I remember…………

Charlie: I like having you as my brother.

Goldi is his sister. He’s Goldi’s  brother.   For now, I smile on the fact that they like having each other.

Charlie: What you have to understand is, four days ago he was only my brother in name. And this morning we had pancakes.

Ephesians 4:32

32 Be kind to one another, tenderhearted, forgiving one another, as God in Christ forgave you

 

Yesterday, Today, and Tomorrow

 

“What’s Tomorrow?” Goldi asks stroking the satin rim of her blanket.  It’s her  routine question that sometimes prolongs bedtime a bit.

Tomorrow is another day.” I said.

“But what ‘s happens in ‘Another day’? she asks.

I stare out the window  into the world held in The Hands that faithfully gives us another day .

“Let’s see… today you woke up and said ‘It’s Earth Day! I need to dress up.’ ”

Earth Day and she dresses up not down.  Earth Day- the day we celebrate the beauty we see around us and get into the dirt…..which Goldi seems to become one with at times. On Earth Day she chose to wear a green ruffled dress and a purple bow in her hair.  It was her idea.  No clashy wrinkly clothes and wind combed hair. Yesterday, she was Pippi, today she was Princess.

“Maybe tomorrow I can wear my pink polka dot dress.” Goldi says with a smile.

“That would be lovely. ” I say.

I start to inch away from her bedside until she asks:

“But  Mom, what will I DO tomorrow?”

“Let’s see… I say staring out into the sorry, world full of teasing and pain.

“Today you helped  young Janey at school. You read her a book and she liked it so much she said “More!”

”  I was sitting  with her in the big rocking chair in our classroom,” she says.

Goldi used to speak in tongues.  She had all the inflection , expression, and eye brow raising gestures. But we couldn’t understand a word. So after several speech pathology lessons,  she was finally  passed “Mommy and Daddy” and she began to open up books, see words, and voice them like music.

Goldi feared younger kids. They were like little puppies wandering all over sniffing and slobbering. Goldi jumped into my arms at the sight of kids like Janey. That was Yesterday, today she is sitting by them side by side reading a book.

“Maybe tomorrow you could read The Little Red Hen. ” I suggest.

“Oh, Janey will love that story!” she says.

I stroke her forehead with my fingertips hoping for her eye lids to wander into dreams.

“Mom,” she says gripping her covers  ” I don’t want to be scared”

“Well…. I said looking out into the world held by the Hands of the One who lights the day and night.

“You made friends with a Wolf, and an Eagle and you’ve ridden a horse. ”

Goldi stood frozen in her tracks at the sight of Ernie the Eagle. He was a giant mystery towering over her.  Ernie was her school Mascot.  He made several appearances at assemblies that Goldi refused to attend. The Horse  was a part  of a field trip activity. She  patiently awaited even the most impatient riders who commanded “Giddy up!”  But then, when visiting a water park, she ran to Violet the Wolf and hugged her. She high fived Ernie at the school pep assembly.  Before that,  she  was crowned Queen out for a ride on her prized horse and her second grade class cheered. Yesterday, she screamed at the scary unknown. Today, she stands proud of her success.

“What if it’s Saturday? ” Goldi asks.

“Well… I say  looking out into the world held in the Hands of One who stills time and quiets all that lives and breathes,

“Your fairy is ready to swing from the treetops. Your princess is ready to dress for the ball.”

Goldi’s toys  were lifeless for many months. Fun was laying each one down to sleep. No feeding a doll or taking it for a walk.  No setting up for a tea party. For the first time in my “childhood” the complexity of play became mind boggling.  What kids were born to do … Goldi was born without.   Teaching her the play schemes was like working through the Pythagorean Theorem.  But then.. she began to set the dining room table for tea and seat many “guests” for conversation and cookies.  She set up a village of castle, fairy house, and doll house, and “Once upon a time ” becomes a reality.

“I could set up a restaurant and my dolls and princesses could be the customers. ” she shares.

“Sounds like real fun.” I say with a kiss.

“It’s nearly 9 o’clock,” I say as I draw up the covers.

“But what about tomorrow?” she asks.

“Well….. I say staring out into the world held by the Hands of the One who guides our dreams according to His good plan, “Tomorrow is one big surprise.”

“What kind of surprise?” Goldi asks with light up eyes.

“A really wonderful one. Better than a tea party,  horseback riding like a Queen,  making friends with Ernie or Violet, reading to a friend like Janey, or twirling like a Princess.  Every Tomorrow has a surprise waiting. ”

Tomorrow seemed liked a million years away since  the Doctor’s told us those dreaded words “She’s autistic”.  It seemed to make each Today a chore or a hurdle. But now in the accounts of all the Todays – we see the Guide who brings the Hope of what lies in Tomorrow.

“Good night Goldi” I whisper.

But Goldi does not answer. She is busy dreaming about that big surprise in Tomorrow.

Psalm 147: 11  The LORD delights in those who fear him, who put their hope in his unfailing love.

Hebrews 13:8 : Jesus is the same yesterday, today, and Forever.

 

 

 

 

 

 

 

 

 

Webbed words from Charlotte

 

 

“A runty pig is trouble.” said her father. 

“If I was born small, would you have killed me? ”  shouted Fern. 

“Course not. A little girl is one thing. A runty pig is another. ”  said her father. 

“I see no difference. This is the most terrible case of injustice I ever heard of. ” Fern exclaimed.  

I read each word with choked up whispers. Goldi listened snuggled down into her pillow. She stared at the pages with bright eyes soaking them in. She knows those words well and role plays them with as much expression as EB White’s words deserve. For  any  good story,  the listener and the reader know that there’s always some hidden secret that comes with a reread. For me, this read was reflection of life with Goldi.

She  too came out a tiny little 6 pound runt and trouble too.  She ate and slept poorly. When she was old enough for words, she only grunted then spoke in tongues. There were noises, sights, and even the tiniest of touches  that lead to screaming and tears. The trouble hasn’t ended. New ones come to replace the old. These days, it’s sleep deprivation, limited food selection, and remembering all the social cues so that she presents herself as Princess instead of Pippi.

But looking into that web of Charlotte’s,  I see the messages that people had to see for themselves to know the importance of life. Wilbur was more than just a pig. Just like Goldi is more than just an autistic girl.

As I carry my pail of pig slops dealing with the mundane  or the trials of the day, I suddenly  I look into that sparkling web. and  squint to see something surprising.  SOME GIRL it reads. She’s some storyteller, keen observer, and artist.  Just when we think she’s never going to take that risk, she proves us wrong .  Terrific. Who else can  spot  the first Robin we long for after the dreads of winter? Who else will greet a guest with the Royal Carpet Treatment? Who else can ride a bike like a swan gliding along the crystal clear water? God put the masterpiece stamp on her.  She’s Radiant.  All she has to do is smile. Her bright blues sparkle. She can turn on the light of anyone’s dark world because she’s made in His image. She’s  Humble.  Because “Sorry”  is the first word off her tongue when her imperfections are realized. She’s first to feel compassion for the someone who is scared or  sad, and excited for the one whose life we celebrate on their marked day of the year.

Sometimes I need to read the words of the web to be reminded.  Goldi’s  life is to be regarded as miraculous as mine. Runt , autism, and all.  So we regard it with SOMEthing of humility, radiance, and a dash of terrific and most of all with love. It’s what Charlotte had for Wilbur and it gave her a miracle back:

After all, what’s a life anyway? We’re born, we live a little while, we die. A spider’s life ( our lives) can’t help but be something of a mess.  Heaven knows anyone’s life could stand a little lift up. 

 

Zephaniah 3:17  He will rejoice over you with gladness.

Lion in the Library

 

We pushed the automatic door button on the brown brick wall and two glass doors opened up. We walked right in. It was our Saturday ritual.

Goldi and her little  brother excitedly promenaded in as her  voice bounced  out “Here we are!”

There was a pointed nose lady with perched glasses looking over the circulation desk with eyebrows raised.  I am certain that her thinking bubble read:  “There are kids in the library. I hope they know how to follow the rules.”

Just like the story:

“There’s a lion in the library” reported Mr. McBee to the head librarian. 

“Is he breaking any rules?” asked Mrs. Merriweather, the head librarian. 

“Not at the moment.” said Mr. McBee

“Then let him be. ” said Mrs. Meriweather. 

Yes, just let us be “Mrs. Meriweather”.  Return your pointed nose to the research of the three toed sloth or whatever it is librarians do while waiting until the next illiterate comes inquiring. We know for the most part, how to follow the rules.

The sounds and sights of the library are clearly distinct from  the grocery store or the post office. You can  still hear through the silence the clicking of the buttons on a  computer keyboard or a soft voice exchange of book talk. You see people sitting like statues hovering over one page of a book. You have to look twice or wait until a page turn to know that they are real people.  You have to strain to see or hear these things, because quiet  and stillness is all there is in a library. But Goldi hears and sees it all.

Goldi slid her hands all the way down the  spines of the books that lead us around the corner. There we stood admiring  the wondrous children’s space.  It was colored with kid art. Stuffed children’s book characters smiled from the tops of shelves.  There were wide chairs perfect for parent /child reading.  There were toys I’d never seen before.   Costumes galore, and … a laminated sign – framed and standing tall and proud:

Please follow the rules:

No running. 

No rough play. 

Use your inside voice. 

Pick up after yourself. 

We wound our way into one of the  A-Z aisles and plunked down to see those overlooked bottom shelved books.

Goldi yanks one off out of pure randomness. She speedily page turns through it and begins a pile of “check outs” on a chair we have claimed OURS. Goldi busies herself  making friends with books while her brother sits and reads a board book.  I breath a sigh of peace and begin my own perusal  of all those children’s authors that have beaten me to the shelf.

I peek up every now and then and find that Goldi ‘s  pile indicates a check out of everything but the shelf itself.   There are more yanked off books on the floor and sloppily on top of the ones remaining in ABC order. Some costumes are all scattered about the floor.

“Hey Mom! I found this!” she exclaims loud enough for the world to hear.

She’s holding up the latest version of Cinderella.

“SHHH!” that’s really exciting!” I say with my fingers to my lips.

“This is the ONE mom! Look!” she says pointing to her favorite version of Goldilocks and the Three Bears.

She plunks down and begins to “read”  :

“Oh no! She’s at the Three Bears House . She is knocking on the door mom!” she says very expressively.

I notice that her voice is beginning to be heard by  a “statue” nearby. He has sighed a few times and crossed his legs away from us.

“Indoor voices.” I say to Goldi in my Mrs. Merriweather voice.

There are a few rattles because Goldi  has soon  found the set of magnetic shapes.  I sit down at the counter space with her and show how to build. She engages for a minute and  then there is a loud beep.

“What’s that?” she screams. “Mom! That is too loud. Make it stop!”

“It’s okay, it will stop. A book got beeped. ”

She covers her ears and scrunches herself up. And in a few seconds … it stops. Goldi leaves the shapes and continues to build her tower of books which stands  about 15 titles tall.  Her brother  still sits as one of those statues hovered over a book.

I try to speed read through at least one book when  suddenly there is a great big loud shriek:

“THAT’s MINE!”

It was the only thing that Goldi knew how to do when someone else takes something she had handpicked as HERS. A boy had wandered into the children’s section and had helped himself to one of the books from Goldi’s massive pile.

Mrs. Merriweather marched over. “If you cannot keep quiet, you will have to leave. Those are the rules.” 

The pointed nose lady behind the circulation desk was soon standing inches away.  She had some serious pointing out to do.

“There have been some complaints about the loud noises in the library. You must use your inside voices and play calmly.  If you cannot control yourself, you will have to leave.”

I found myself the mother of a Lion in the library. Goldi hung her head low.  She welled up with tears and left the huge stack of her new hard cover friends.  She knew she had broken a rule. She knew the feeling of being unwelcome now.

“We’ll leave.” I said in a voice that was quieter than the library stillness.

We didn’t visit the library the next Saturday or the one after that or the one after that. We didn’t visit for a whole bunch of Saturdays. Goldi had soon forgotten what had happened and missed it so. But hadn’t forgotten.

I didn’t have any comeback lines like  “It was a few loud noises, she won’t do it again.” Do you mean to provide all this for children and not expect some noise?” But rules are rules. No Lions in the Library.  They have no business being in the library. They are loud, big,and wild.

But my Lion loves the Library.  A Lion in the library might break the rules from time to time.  And for this Lion, there is a reason for rule breaking, and the reason was autism.  And a Lion like Goldi has every business being in the library.

So one sunny Saturday, we walked right up to the button on the brown brick wall and pushed it. “We are here!” Goldi announces. The pointed nose lady looked over the top of the circulation desk. The thinking bubble that floated over her head remembered. I am sure the words in the bubble were :”Here they are again.”

We have spent many a Saturdays in the library.  We do our very best to follow the rules. Because even in the library there is a place for a Lion, rules and all.

Romans 6: 14  You are not under the law, but under grace.

 

 

 

One Silent Night

 

Night Sky With Moon And Stars

The glowing candles warm the dark, and voices sing  the wondrous words that surround you with everything Christmas,  Silent Night- sleep in heavenly peace. All is calm. All is bright. 

At that moment, all is right with the world. All is warm and comforting, wonderful, and the busy, whirlwind world, stops spinning.

Then comes our own Silent Night at home. The dream of restful, quiet, cold, winter, but …… Silent Night of sleep.   It  arrives with stars and a blanket of grayish black.  The moon makes the snow glow providing the perfect night light.

Goldi has her favored blanket, her heated rice bag, her feet adorned with lavender oil, a weighted blanket, and her night light glowing up her room like a sunrise.  We set the stage for the All is calm. 

We nestle in for our long winter’s nap.  How I want the LONG.  WIth the burdens we carry on our backs each day- Rest is more than needed.  The covers warm me and there is nothing but the noise of the walls sounding off.  I begin dreaming and then…

Knock Knock.

No need to ask :

“Who is there?”

It’s Goldi knocking on her OWN door. I pretend it’s only the walls talking again. But then it crescendos into “I’m awake!I need something!”  Goldi  waits plastered against the door’s face  listening for my footsteps. It’s a mystery why it’s her door and not mine.

Ask and ye shall receive. Knock and the door shall be opened. 

There is a sunset glow that flows out of the small crack of her door.  A safe and soothing pink called Quiet Coral surrounds her. The softness  of her blankets caress her. She wears headphones that literally whisper Silent Night.  John Rutter and some choir of boys from England have sung her to sleep since Christmas.

Knock and the door shall be opened. I stumble over to her room and slowly open the door eyeballing the scene.

” I hear the rain. I hear the wind. I don’t want to be alone.” She whimpers.

I repeat the bedtime cycle of story, prayers, and a kiss. I  press her down in comfort.

When she was a baby, there was the Baby Wise or the No cry sleep solution. There was the Ferber Method. There was white noise and the baby monitor. What ever happened to just snuggle up to your  Teddy and sleep?

40 to 80% of kids with autism have sleep problems according to WEB MD. These kids have abnormal melatonin regulation so they may release their melatonin during the day instead of at night.  I didn’t think much of melatonin until this newfound night challenge. I didn’t even think about melatonin until its “abnormal regulation” required some checking into. Ever since Goldi realized the busy sound of rain her sleep is restless. Ever since the wind aroused the wild of the night, her sleep is full of anxiety.  Ever since the darkness became a  cold suffocating blankness her sleep is full  of worrisome what ifs.  Goldi has autism. A good night’s sleep adds yet another obstacle on this journey.

“Don’t leave me alone in here! I will have no mom! This just isn’t going to work!” she shrieks.

Reasoning helps very little because her highly stimulated brain has been let loose. No amount of “it’s going to be okay” will do.

Silent NIght, Holy Night- All is calm, All is bright- Those words stopped wars. Enemies turned friends who played a game of football, traded chocolates, and shared family photos. Those word, so familiar to many, cause us to ponder the kind of peace that is beyond our understanding but is for us to hold and give us a Heavenly Peace.

I start the headphone whispering again. Goldi squeezes her eyes shut as if to really listen:

“Silent Night, holy night, all is calm, all is bright. – 

Silent Night, Holy NIght, Son of God, Love’s pure Light- 

Radiant Beams from Thy Holy face 

With the dawn of Redeeming Grace

Sleep in Heavenly Peace. Sleep in Heavenly Peace. 

 

John 16:33

33 “I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”
 John 14: 27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.
Philippians 4:6-7 Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.
7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.