Finding my way to my son through sensory processing disorder opened my eyes to a Holy knitting together of a boy wildly and colorfully spun, by a loving, perfect, and intentional God.
Source: does my child have aspergers?
does my child have aspergers?
We were cross-eyed, dumbstruck tired – craving an evening of sinking into our outdated furniture and staring at our oversized tube t.v. watching a VHS. the goose worked full-time with a couple of add-on jobs and I took in littles for next to nothing to help families like us who couldn’t afford daycare.
Bellies were full on happy meals, the tub was draining a mocha-swirl of a day’s dirt mixed with soap, stories had been read to the Irish twins while big sister read about Easter Island, and it was time for mom and dad…just mom and dad.
There we were, all settled in for a still evening without a breath of wind or whining, when we were hit yet again with an F5 sensory storm spinning out of control from our two year-old.
The repetitive screaming, turned into coughing…even gagging at times had become a part of our daily routine. This child could take all of his two year-old half-pint lungs into a full-blown same sentence tornado, gain powerful momentum, and destroy morning routines and coveted still evenings. These meltdowns often dropped on us out of nowhere and could be heard for hours… some might say miles, until his vocal chords wore themselves out like a leftover breeze of a raging storm.
Nothing I did could calm our son in the middle of these “sensory storms.” If something had invaded his spacial comfort, his routine, his ability to process through his overactive senses, we would be left in the messy trail of twisted information reeking havoc on his sweet tender soul, and the comfortable we craved.
In infancy, we all noticed it…the way he stiffened up while being rocked or cradled, or when we tried to comfort him in what we thought may be his “fussy time” like most babies have at certain times of the day. The way he startled so easily, and how the restriction of a car seat made trips longer than 10 minutes unbearable. He was my third child, and so I thought I had this mom thing down, but Carter came all wrapped up in something so wild with color and vastly different from my girls, that I didn’t know how blind I had been. The vibrant threads woven into this one, would train my eye to see the glory of a Holy knitting, spinning, forming together a child stamped in an Image, and marked masterpiece. He was unique, and his uniqueness made me different...cuz I needed to be different, so God gave me Carter.
As Carter grew, we as parents grew with him. We grew in grace. The grace to understand he couldn’t adapt to certain situations and that home was his sanctuary. So one of us would often stay put with Carter while the other attended another child’s event or other social activities we were involved with. When Carter was old enough to match words to feelings, we understood that too much stimulation caused migraines, throwing up, and sleeping 12 hours long.
We came to understand that tags in shirts, tight sleeves or pants, tube socks, underwear and shoes all “felt funny” and so daily, I would assist in the changing of clothes, and trying different articles of clothing until we found the right one, sometimes over the course of two hours. Often, out of anger and time limitations, I forced him to wear what I had chosen, not fully understanding the hours of torture he would have to endure.
For one whole year we gave up on underwear all together.
Carter not only had sensory issues, he also seemed to crave non-food items and I would often find bites and whole chunks eaten off of my deodorant. Toothpaste tubes would be found in his room, the minty paste sucked half-clean out. I started checking my laundry detergent, because I had remembered reading about kids like these. Pica kids.
Though Carter was delayed in speech, he was advanced in motor skills. He walked at nine months, learned to ride a bike before his older sister, and was ambidextrous in swinging bats and clubs, and all the while the question kept creeping in, “does my child have autism?”
I didn’t know anything about spectrum disorders. I just knew my child was different. Friends and family suggested ADHD, medication, spankings, and letting him know who was in control over his behavior issues. Some were convinced he was naughty and manipulative, strong-willed.
I listened and spanked. He was still in diapers and I was told to spank him with a spoon on his leg so his diaper didn’t cushion it, as punishment for not taking a nap. Carter didn’t sleep well, he wandered at night, and gave up afternoon naps far earlier than my other two children. I was exhausted, and at my emotional end I spanked angry with that spoon…and then I cried. I cried hard. I cried mad. I cried shame…and the One who skillfully weaved my Carter together, in all of his melt-downs, in all of his behavioral issues, in all of his robbing my routine and comfort, said in a shiver-whisper, “no more.”
In an ocean of tears and shame I swooped up this
and in between heave-sobs said, “mama will never hurt you again…I promise.”
Grace wasn’t something we were instinctive to. No one is. It often comes with an angry fistful of prayer, a fizzled out joy, a sudden realization that as convinced as we are that we have a measure of control over our kids, when chaos wildly spins through your home, we finally crash in the dizziness of it…sick, and then crawl to the cross. We had to learn grace for Carter, we had to learn the cross. We had to study Jesus and let Him fill us with grace to be safe parents for our Carter. To reflect God’s image and rescue him when he needed rescuing, to protect him when he needed protecting, to hide him under our wing when he needed security and familiar, and so we became so we could watch our–boy-become.
When Carter went to kindergarten, his teacher wanted to get his hearing checked, she was convinced he couldn’t hear. She repeatedly would ask him to do things, or say his name, calling him to join the rest of the class, and get no response as he continued to play with the same familiar toy.
Since the time Carter could form three words together, he would get stuck on something. When he was little and wanted his blankie, “he would repeat over and over until his voice frayed itself into a whisper, “I want my dee-tee! I want my dee-tee!” The record kept skipping even after he had been given his blanket.
Does my child have autism?
Two- hour meltdowns were our normal. These were out of control, kick the wall to the rhythm of his skipping record sentence, “I (kick), want, (kick), my (kick), dee-tee! (kick-kick). His older sister learned to fall asleep to them if they happened at night.
Bright lights caused migraines. Loud noises, tantrums. We forced him to stay at a firework display one night out of selfishness and a desire for our child to be like every other child.
Carter often went off alone to play and line things up like matchbox cars, plastic action figures, potatoes…
Does my child have autism…?
It was hard for him to look you in the eye. He was painfully embarrassed over the simplest of things.
Learning to read was excruciating, trying to understand math was like awaiting death row.
He took everything literally and jokes often settled in think-clouds outlining a constant question mark above his head and left him wondering why everyone was laughing.
We took him to Nickelodeon Universe and had to ask the person controlling the ride we had unawaringly propped him on, to stop it. The terror in his eyes, from the sudden unexpected motion he was experiencing, frightened me. He hated it. We left early.
At ten years old we put a guitar in his hands and that very night he came down the stairs and effortlessly plucked out a song he had just listened to on the radio. Music became his safety, his past-time, his obsession.
Music was spun into him on that crazy spectrum! Music made sense. He couldn’t read notes, even though he took lessons, but there was an instinctual rhythmic composition in his soul, writing itself out in song.
Much of the time we had fought against that heavenly composing that graced our major falls with Carter and strengthened our minor lifts. Often we were too sharp, and stubbornly flat, unwilling to move with his rhythm, But God was writing our family song and the end result was sure to set us all free in a holy dance.
When Carter was 16 I finally took him to a specialist who diagnosed him with Severe Sensory Processing Disorder, though most people wouldn’t know it. She said he was brilliant because he had learned to adapt to his uncomfortable environment.
in 2011-2013, I had went back to school and finished my Bachelor’s in Marriage and Family Psychology. I learned about spectrum disorders. I learned that for high-functioning kids, diagnoses aren’t all that important, but what’s important is that you don’t try and reshape what God was spinning into motion with all the wild colors in the spectrum. That you learn the repetitive steps of their dance. That you sacrifice your normal and enter into an unfamiliar world of routine, repetition, familiarity, and embrace the intense joy you get with a spectrum kid.
Spectrum kids force you to slow down and enter in. Spectrum kids demand your attention. Spectrum kids make you parent.
If you parent them well, by looking to Christ and His Father’s heart, surrendering your agenda to the one who writes our days, it will stop being a battle of the wills and you will both win this side of heaven.
What about you? Share your comments, your pervasive questions that keep haunting you. Ask me more, because there is still so much to tell! Join the conversation!
I plan to add part 2 to this later in the week and share his food issues, touch issues, things I learned to do to maintain routine and peace.
Trish
Related resources:
http://www.parents.com/health/autism/symptoms/understanding-aspergers-syndrome/
http://www.popsugar.com/moms/Signs-Asperger-Syndrome-27332056
https://www.autismspeaks.org/blog/2013/06/21/pica-autism-connection-help-perspective-got-questions
community
Who am I?
If I were to tell you who I am, I would tell you that I am a broken lover of Jesus following hard after Him, and a writer who often writes as messy as my life.
I would tell you I have received the gift of a husband, who I refer to as “the goose” because geese mate for life and never leave the other until death separates. Even then, a goose instinctively mourns often nestling itself alongside its feathered mate for hours and days after death. Sometimes it’s grief is expressed through wings as it flies circles around it’s still friend and life partner, until in a downward swoop of exhaustion it makes its bed of death next to the one it cannot bear to soar without. This sounds like a beautiful love story, but these two geese here in this life have stared head on and headstrong in the face of divorce, begging for it to lead us out, and then bowed broken to the One who promised to finish what He started in us. We have hated, we have hurled word swords, we have rejected, we have torn down, and we have drawn blood. We bear scars of wounded expectations to remind us Who our hope is in. We have faced crisis and adversity that has left 85% of Christian couples alone and floundering, victims of divorce, after being blindsided with brain injury in our oldest child. We have navigated through a mess of twisted brains for the last 10 years and we stay, because God won’t let us leave.
I would tell you I have received the gift of being called “mama” in sweet tender relationship with my three babes, and how “mama” has morphed into an angry “mother!” more times than I would care to admit, when I’m not listening…distracted…consumed with self or the pull of the world. I would tell you I let my kids eat raw cookie dough, carbs, sugar, and did not make them memorize scripture, though I had right intentions for their physical and spiritual health. I would tell you I have disrespected their dad and let this untameable tongue, when I’m blinded by my own mad heat, get wild all over him….
blaming.
breathing out a putrid scent of self-righteousness….
And then I would tell you I cried broken.
I would tell you most of my life has been performance driven…
and left me suffocated sideways asking my husband, “please tie-me-to-you….” as we slept at night, for fear of losing my mind.
I would tell you I cherished “doing” and how my works trumped possessing a deep affection for people…until I was awakened to a desire beyond performance when I felt the warm soft of a Holy kiss and I flushed down to my toes in wild passion for the One who leaves me tokens of love…waiting when morning is sent forth out of its hiding.
I would tell you I experienced a kind of intense raw-love I didn’t think existed before I met the God who takes away.
I would tell you I take the hard path now and so that means I will lovingly disagree with you. I will cherish you, I will pray through our conflict, but I will choose Christ’s way and prayerfully explain why I believe it to be His way.
I cry broken and bleed sticky.
I would love to open this blog to a community of sticky, messy people who cry broken with me. I will be asking people to guest post. I would love to hear your marriage struggles, your parenting struggles, your personal struggles. We will talk about current issues as well.
We are all wild olives. We have been grafted into a family. Share with me the pain of the pruning…
We are tribal and dance dangerously on the edge through our individual lives, yet we ache for the circle of rhythm within this tribal community.
We are daughters of Eve, hiding and ashamed, seeking healing…desperate to return to unbroken fellowship and restored relationship with Christ…and it happens in community.
Would you consider being a part of this blog? Email me your story. Suggest a topic. Please keep it to less than a 1000 words. If you aren’t a writer but just enjoy reading, share your comments, let us know you!
I will also be working at bringing this blog more up to date, but I am so technologically illiterate that it may take a while. Send me photos I can post that help tell your story. I will work on this on my end too!
Always remember to bring glory to Christ who upholds and sustains all things including how He has shaped you through every trial and hardship.
I can’t wait to hear from you! Please comment in the comment section, and if you have a story you would like to share, email me at pedersn@frontiernet.net
What does community mean to you? How has God used community to grow you? And, men, you can comment too! We value your brotherhood.
held, consumed, intoxicated by His love,
trish
why’d you name me that anyway, mom?
Lately, I’ve been studying faces. I asked God if He would help me love people better and I think this is part of His answer. I see a face on a run, around the corner of an aisle, or through a passing window and my eyes open on them…those souls hiding behind skin with eyes…peeking. Attached to every face is a name and I wonder…
It’s like the rare, the ancient, excotic and right chipped cracked to the base. Is it lovely protected by a window, this art untouchable? Is it worth a breath of beautiful without its description? A pair of hands at the end of a soul story spinning, shaping, squashing, restarting the creation. If we know where it came from, do we breathe out wonder? Do we see its worth?
I’ve heard it said of me, “you’re a bit of an old soul.” In many ways this is true. I’ve been sure I was born into the wrong era, possibly the wrong century until God carved Acts 17:26 on my heart and steadied my time-travel wanderings. And if you look at the names of my children, this would be true, for Hannah goes back thousands of years, while Kylee and Carter hundreds. The heritage runs richer than I ever cared to study when I slapped a tag on each of them. I named them because I liked the sound of their names…and other old-soulish reasons. Hannah was suddenly changed from the chosen “Ashley” one week before I, present in fullness of all of her bearing down and split, emptied out and gave her my grandmother’s name. I loved old. Her name gave her that in everything new. Kylee I chose because I met a woman named Kylee and instantly knew that would be her name. I had never heard anything so beautiful. It was Irish, and it was a way of keeping at least a root of the haunting Gaelic in us. Then there was Carter. One full pregnant and old soul day, grandma said all southern strong, “I wish one of you girls would name your baby boy “Carter” after my daddy!” When Grandma meant it, drips of southern ran down every word. I needed no further convincing, cuz I love grandma, southern, and the name Carter.
Some people agonize over naming their flesh and cells and bones and strands of color split up in chromosomes. Like my sister who couldn’t bear to give my niece a name until it was the perfect one. For one week she was just “she,” nothing more, nothing less. Grandma’s southern came wrapped in a stringed tornado at the end of a real telephone on a cord each day of that nameless week, “When are ya gonna name that baba?” She finally decided to go all Swahili on us and chose Aziza. We just call her Z. Pretty sure this root has to be grafted in.
And then when it gets right down to the deepest of it. When you know there is more to it then hormone-wild emotion, or the standard or blessing of a name, you wonder if you named them because He chose through our freedom, our flaws, our crazy, our wishing…did He whisper a name and we knew it belonged to that one? Cuz it wouldn’t be right on the other one. It fits this one. Like when 1500 pounds of metal wrapped itself around bark and the only thing that held in her sloshed brains was skull. Chaplain calls and says, “come now, not much time.” Time grows and doctor says only one other has ever woke up from this. Eyes open empty, they pass through you like a lost ghost, and doctor stomps out your raging hope fire and says, “this may be it.” Then God pours out favor upon favor and everything lifeless in skin attached to tubes breathes and moves and talks and walks and writes four years of English in college. And you say, this is her name, for Hannah means grace and favor of God.
And after God dumps an ocean of favor out on one, Kylee retreats and grows small, for she is narrow, like a channel finding it’s way through fog thick and winding…..And I have to shrink to get inside of her again. And I get small….navigating my way back to her and we flow together into the new spring reflecting glorious and its fresh here, but we had to take the narrow way. The mystery of the Gaelic one…still makes me be less, her way is hard…for it requires I go to her bare, stripped….don’t pack too much…she just wants me. And her narrowness points to Holy, for His way is narrow…and we sacrifice ourselves, because He did, to get there.
And then in between Asics bouncing on pavement running with Holy…I chuckle that Carter means “cart driver, cart-loader” and God says, He leads in worship and many are burdened….In His fingers fashioned for stringed instruments and His chords of minor lifts, He loads up weights and troubles and drives them off in a song to the One who daily bears our burdens.
And I think, You knew all that when I just liked the way they sounded…
running with Holy
I got to run this morning….fueled by 7.5 of sleep makes for quicker miles and clearer thoughts. For me, running usually results in a blog, scribbled notes smeared with drips of sweat, the missing sentence, and prayer all tangled in with the mess of stringed words. But running is always worship, even the words that may make for a good blog or article find themselves bowing to the One who intricately designed that which would birth forth anything at all worth a lick of reading. I can’t write unless I first see, or smell, or hear or touch something of this holy creation. Like when I ran down into the meadow and felt it’s hot breath of passing summer surround me and I thought it about time for the crickets to put away their bows and silence their chirps. Or how orange and black fuzz wraps itself up in a season and dusty wings fly a days worth of living. If you can’t see God in this, what’s the point?
I prayed for those who have lost hard. Cuz loss runs wild over a soul….. uncatchable….until it hitches up against the blind and with one hard yank rips the scales off…and swollen red eyes see Holy. He floods in, in a collision of Grace and mad exhales and shows us the way to live both lonely and full, cuz He makes a home for the lonely (psalm 68).
I run past a young mama, with a fresh babe at her breast. I inhale the newness and young of it all. God makes babies. God gives tired mamas sweet, fresh skin to run tender fingers along as if discovering a soul treasure swaddled in skin…..and milky breath to breathe in as tears run past a smile wrapped around this life. This. Now. Life. Where God is. Everywhere.
I keep running and listen to ghosts of days breathe through trees, and the bow creaks in the sway. And this too, calls for my soul to stand to attention in worship,as the first leaves dance about in a swirl.
I pray and ask that my verses be addressed to and for the King. I want what’s glorious inside to find a trail out the tips of fingers and relish the run in phrases and descriptions that reflect our ever creating God. The run, the meadow, the prayer, the mama and babe, the ghosts…..I’ve caught them on a page and I will remember them.
when God said go to planned parenthood
I wasn’t sure how I was going to feel that day, but He said go, so I like the others who had already been going and saving mamas and babies, set out to a hostile and foreign place. I had already been there, but a quarter of a century had passed since then, and the thought of returning had never entered my mind until He said “go. ” He’s like that you know? He makes us return to those ancient ruins in order to show us He is the Rebuilder and Redeemer and Restorer of all those years chewed up and devoured by the locusts. Still, this place, Lord? This was a place I’d hoped no one would ever know I had once visited. This was a place buried under years of forgotten, shame-shackled, and pushed into corners covered by miles of self-preservation, and an unwillingness to share…as if it never happened…as if I never made the conscious choice. There were parts I wanted left out of the story, but I kept forgetting I wasn’t the author of my story, God was, and what I wanted to stay hidden in the darkest corners of my past, He said, needed to come into the light, because He was at work then, and that even the darkness was not dark to Him and He had done a glorious and wondrous work there….in my blackest. And so on that day, the day He said “go,” He grabbed my trembling hand and steadied the racing beats held in by ribs, and together we walked into the Planned Parenthood adjacent parking lot.
As I began to ask the Lord what He wanted me to write about, he said there were places we would have to return, because He had always been there and we would face them together. I asked Him that I might be a good steward of my words. To help people see Him in all the mess of life we create, each one of us in tangled stories of sin and forgiveness….grace interrupitng…in our turning and running.
And then I saw her. She was just there front and center as if she had been there hours in advance to set up camp for the army who would come. All nine or so decades of her, all in, on that day. She was wrinkled with the passing of merciless age and creased with kindness. The pressing, bumping, space invading crowds, the scorn of hostility from the PP, these weren’t enough to keep her at a distance. No, on this day she would not be found safe at home surrounded by the friendly familiar. There was no waiting to hear second-hand what her Lord told her to walk into that day all dressed up in battle attire. So she went, all of her twisted joints, ache of gospel-worn feet with thousands of miles of compassion and obedience, and the slowness of decades behind a life. This could be her last one, and so she wrapped fingers twisted with arthritis around that strong familiar Hand of her First Love and went. There was a mass of beating red, strong that day, conceiving of prayer and birthed through faithful lips. She was the one I would see when I returned to an abortion clinic. When I saw her, her lips moved like Hannah’s, and our eyes never met, for hers were closed, hands folded in prayer, undisturbed to the thousands surrounding her. Her prayers seemed to form invisible cradles for the ones without cribs on that day, and they rocked those being unraveled in the building next to us as they fell into hands of Holy. She didn’t just stand in the gap that day, she laid down a bridge of self over the gulf between life and death. When I saw this frail and mighty servant of Jesus, my eyes spilled in gratitude, overwhelmed with love, victory, sadness…in remembering. .
How long, Lord? How long has she been praying? I wondered. Since Roe verses Wade? Had she prayed for me when You roared in and rescued me and the life forming in my deep from inside the walls of an abortion clinic all those years ago? How many babies have been saved in accordance of your will that carried her prayer? Had she waged a mighty war on Roe verses Wade? Here stood a battered warrior of prayer, unafraid to stand in the center of a protest of over four thousand people.
And so we sang and we prayed and next to me was a woman holding her adult daughter, the one who had just one more chromosome, celebrating her life, because all lives matter and we all bear His image… and the first nucleus of a cell is reflected in all of us through Him. They were here together because on the day of her birth God danced. He danced when they said “she has Down Syndrome,” and she said, “she has my eyes.” He leaped when they said, “special needs,” and she said “I need her to show me more of Jesus.” He let out a shout when they said, “it will be hard,” and she said “the hard way through Christ softens me.” I had kin here. The next generation, young marrieds with toddlers and swelling tummy’s with babies still safe. Blacks, Asians, Whites….a family of wild color reflecting an Image. We came to say lives matter. We came to learn how to partner with the One who saves lives because His blood ran down wood sticky and warm and we tasted it and lived.
This wasn’t the time to wonder why Catholics believe what they do, or Baptists preach what they preach, or the Reformed try and reform them all, or Charismatics show us what they feel, this was a family standing on kingdom ground in unity….together. These were my kin, brothers and sisters I would one day stand next to again crushing the broken rubble of shattered denominations under our feet, when we really believe there is neither Jew nor Greek .
And so I went, because blood ran down a cross. Because the grave is empty. Because Christ roared in and rescued me from abortion and made me remember… I made a choice, and though I needed to repent of making that choice, He delighted in granting me unimaginable kindness and mercy that day. I went because its time for me to keep going and standing in that gulf bridging it with prayer like her. And maybe real cradles will rock live children if I keep going.
holy trouble
Something from two years ago…
Father, Abba, who knows me so perfectly, so intimately, so beautifully and wisely; You wise, true, faithful and all powerful God, created a story for me…not to make much of me, but to put on display your glory, your splendor through a broken and crushed daughter. A girl born into sin, yet fearfully and wonderfully made. A girl who would deny you a thousand times; stand with scoffers. A girl who chose sin, lust, self; hurting, beaten, bruised – seeking heavenly salve, yet her soul did not know it. Salve from heaven came down and covered the girl, and with Holy salve came the weight of Holy trouble. The girl began to have frequent and familiar encounters with a Holy God who gives and takes away; and in the taking, hope was born. In the taking there was grief. In the taking there was suffering. In the taking there was anguish. There stood the girl stripped, yet clothed. Clothed in heavenly attire, clothed in a righteousness that on her own she could not claim. With every stripping, the robe remains to cover her nothingness, her nakedness apart from Him. There are days when suffering stings, yet the robe is safe. There are moments of sin, yet the robe, still safe. There are hours and days where darkness hovers, and there standing in the robe, the girl is reminded that even the “darkness is not dark to Him.” There are days she cannot stand, and there, on Holy ground, crying for more salve, the robe remains. The lower she goes, the thicker and heavier the sweet heavenly salve. It won’t be long and she’ll stand again. How could she stand at all having not known the depth of the weight of Holy trouble? A weight that crushes, yet renews. A weight that breaks and stops a selfish heart and slowly re-starts the rhythmic beating of two hearts, a girl’s and her King’s.
tie me to you
“I’m afraid I might hurt them…I’m so scared…maybe if you tie our ankles together while we sleep it will help me feel safe…” I said in a barely voice. A cracked voice whispering through the effects of dehydration and an all consuming anxiety that had left me 11 pounds less than me in 11 days. For the past few months I had been fighting. Fighting hard. Fighting for peace. Fighting for joy. Fighting for happiness. Fighting to please. Fighting to keep the girl, the wife, the mama. If I could just keep her alive I wouldn’t sink into it all, I wouldn’t lose everything I counted as gain. My husband would stay. My friends would still look up to me. My kids wouldn’t lose their mom to a psych ward. I waved the white flag and collapsed.
As a young wife and mom, I was in a place I never thought I would fit. I loved it. I loved who I had become. I was married to a man born out of pride and responsibility and he was safe. He bought me a home and then a bigger home. We gave our kids lessons, and love and prettied up pieces of broken. I saw him and knew I would marry him. He told me he would marry me on our third alcohol slushed day together. I walked into his arms and fell into his bed in a haze of brandy and cokes. By a righteous outstretched arm over us and a stitching of holiness we’re still here minus the haze. I was jagged, raw-edged, skin-stretched before my time. I had a list of erased names belonging to men. I had cigarette breath and alcohol veins. I gave off an aroma of pride mingled with shame and the scent of a God who gave up. I didnt’ even know I ran from the God who hounded, wildly…furiously. I stood with mockers and ran into a darkness that would continue its fight for me. I bared it all because I had nothing to lose and the eyes of strange men saw everything..
Seven years old held a heart written with new words of life, breathed on by Spirit, awakened to grace. I loved my Jesus and desired to do everything He wanted me to do. I was a good girl on the outside. I loved to read and get good grades and please my parents, but inside rebellion ran deep and I didn’t just dip my toes in it, I played the game of who can touch the bottom first and I won every time. I drank from a mason jar something that burned my throat when I was 14, and though I hated the taste I loved the euphoria.
I had somehow found myself the mother of three and I heard the Voice without sound whisper into hungover ears one Sunday, “take them to church” and we drove until we stumbled in, and I remembered Jesus. There were fresh tears and new hope and Jesus said He had always been there and I believed Him and wanted to tell my babes everything I knew to be true of Him and all of the beautiful new things He was teaching me. There were conversations about God and heaven between toddlers and mama… and angels stooped low to listen. I memorized scripture while they napped, lungs filled with worship, that burst through deaf tones, and I didn’t care that I couldn’t match a note to a scale, I was sure the sound of angels joining in my chorus drowned out my flats and sharps. And this is the way it went. God blessed and I stayed home and cooked and baked and attended bible studies and learned to pray on a floor and get intestine honest with God. At first I was afraid to have my bible out in front of my husband, but after a while I didn’t care. I ate and stayed hungry. I thirsted and stayed thirsty. I read everything I could on godly marriages and grace-filled parenting. I studied each child’s love language and spoke in each of their tongues. I was pretty sure I was doing it all right and God was pleased.
It was in the middle of my right where everything turned sideways and wouldn’t stand straight again. Even me, sideways in bed. I couldn’t get up. Something hit me so hard one day it knocked air from my lungs and I literally couldn’t breathe. I struggled for every breath. Food became my enemy. I couldn’t swallow because my throat always felt like it was closing in on anything I would try and eat or drink. I trembled violently each time I brought fork to mouth. I feared the worst. I feared they would lock me away and I would never see my children again. just when I thought I couldn’t fear anything else, the images came. I was afraid I would lose my mind all together and hurt my own children. I closed my eyes tight and commanded them to leave in Jesus name. I tried to chase them out with scriptures on peace and resisting the devil. They fearlessly stared back at me. It’s as if my fear strengthened them. I called my husband home from work and dissolved into his arms on the hull of our garage. I wept and felt his chest heave in unison with mine as he wiped his own tears before they wet my hair. I feared losing my children. He feared losing me. We were both losing. I went to bed and didn’t get up. For days. He brought me half turkey sandwiches and pressed them to my lips, while he whispered in close “please eat, baby…” He got low and prayed. He offered, “I’m here, baby” and reached for my hand in my terror filled sleepless nights. He brought me xanax and sleeping pills. He tied our ankles together each night with the belt of my robe so I wouldn’t wander. He searched for me in the pitch of night and found me on the floor of my middle daughter’s room trying to be as near to her as possible in hopes that the nearness would grant me – me back….I was a good mom! But the images had lied to me. He reached into me where I was so lost, took my hand and said, “c’mon baby, lets go back to bed, she knows you love her.”…more words would come, “c’mon baby, get in the shower, I’ll go with you.” He led me to the bathroom while bones through skin shook and I couldn’t look up. I steadied myself on the bathroom counter and looked into hallow eyes. Someone was in the mirror staring back at me, but it wasn’t me. Where did I go?! I screamed from inside. I can’t find her! I got into the shower and held one trembling hand toward heaven and begged God to take my life and stop my racing heart. I wanted to die but was too afraid to take my own life. I couldn’t face another day. But God breathed a silent no over me and I groped for Him but couldn’t find Him. I opened my Bible and stared at black words against thin white and yelled at God. My mind so distracted I couldn’t read one verse. I pressed my bible into my chest hoping it would save me from the cancer-fluid of self filling my lungs. I asked God to breathe for me. My friends were afraid of me, like Job. In a daze of staring at empty words in between leather binding, I yelled, “if this is what it means to be a Christian, I don’t want any of it!” and a tiny stream of light broke through into my solitary hell. I showered and put on mascara and lip gloss. Still weak, I walked into my husband’s office and tears fell out of his eyes onto his suit. He took my hand and we walked outside and he said he’d never seen anything more beautiful. The healing had started, but the wounds still raw…
I opened up Beth Moore’s breaking free and God spoke to me about everything He had shattered in the breaking so that I might be free. He said I had to forget who I was, so that I would always remember who I was in Him. He taught me who He was and who I was as His beloved and we danced. Oh, I was still afraid to dance, clumsy and weak, but He led and we swayed together under heaven’s orchestra, my head to His heart. He breathed for me and I inhaled Him. I stopped shaking and fighting images. I started to sleep. I remembered how to laugh. I remembered God. And I begged Him again. This time I begged Him never to take me back there. Each time I looked back in fear, Jesus gently took my chin and tenderly turned my gaze toward Him. He became my life, my treasure, my love, my joy. I had a new understanding that even the flames of hell are free to singe me in His sovereignty, but their licks can only reach so far. That even the image of my sweet husband tying our ankles together so I wouldn’t wander alone in the dark, reminded me that nothing would separate me from Christ and His love and I began to trust. I learned that I had an identity so steeped in being the good wife, the best mom…because that’s what Christian women do, and it somehow cleaned up my past. At least that’s what I had believed. But he took those false beliefs and showed me truth and showed me that He not only runs to the broken but He breaks those who think they’re shatter-proof. He showed me the cross again and this time I saw real blood and wanted to taste it. I drank His blood and let Him wash me in it anew. I let His mercy scrub me raw. I wet His feet with tears and snot again and again and again in more gratitude in groans than words in voice. He showed me how to cling to the cross and believe down to my toes that I couldn’t earn His approval through righteous works and obedience to my role as a wife and mother. I could never be perfect enough, He was the perfect one! In His severest of mercies He let me crumble in a heap unable to distinguish reality from insanity and sang to me there. And then one day He whispered, “Arise, my darling, my beautiful one, and come along. For behold, the winter is past, the rain is over and gone. The flowers have already appeared in the land; the time has arrived for pruning the vines, and the voice of the turtledove has been heard in our land. The fig tree has ripened its figs and the vines in blossom have given forth their fragrance. Arise, my darling, my beautiful one, and come along!” (Song of Solomon 2:10-13). He kissed me and tied Himself to me and I was no longer afraid.
coffee and oil (2 Kings 4)
At a.m. and black I craved more spoonfuls of milky sleep drift…cuz sometimes He feeds them to me. Other times he feeds me words and pours out morning oil. This morning was for coffee and oil. After loving the lump (aka Ezra dog) and feeding that cat..I found my spot somewhere at the end of the fourth watch. Through the soul-cry of the psalter I learned about the night watches, how his soul waited for the Lord more than the watchman waits for the morning…and it sang to my soul, and so as most mornings go…I came before His table to watch and to eat words. If I don’t go to that banquet table and drink deeply from sweet wine, allow myself to be kissed by God, inhale His breath…I will starve and try and fill up on Facebook, Twitter, to-do lists…but then I would feel like I so often have when I overeat, I should have stopped, slowed down. Now I’m sick and for some reason I keep pitch forking it in. I’ve learned, this kind of filling up never satisfies. I need real food. I need manna. I need pure milk. I need raisin cakes and apples, the sweet juice of pomegranates. It’s all been set before me. The God who never slumbers nor sleeps prepares it for me before light greets earth.
I’m in a long season of feasting right now. I’m steady. I want to stay steady. But steady won’t stay if I shut my ears to the Shiver-whisper that beckons in the still dark. So I go. I didn’t always go. This self serving, sleep loving girl used to think, I don’t need the banquet, I’m sure I can grab a protein bar. Something power packed in five minutes, on the run, in between checking my phone, peeping into windows of Facebook friends, joining the song of tweets instead of waiting for the song of real feathered worship just outside my window. But somehow, just reading an online devotion in ten minutes, or skimming a psalm, lifting up distracted and interrupted prayers, wouldn’t sustain me. If I didn’t take time to savor what Jesus had prepared for me, to eat choice words and drink sweet wine, to feel and touch and taste and see his goodness and just stay…then I could never be ready for husband and kids and schedules and appointments and ministry and pressing needs. It’s like trying to serve them me without Jesus, and me minus Jesus…ain’t pretty and she sure ain’t sweet. The law of kindness that’s supposed to be on my tongue is more like the law of Trish, harsh, demanding an obedience that reeks of gallows…Trish is both judge and jury and as far as she is concerned your all guilty. But when I’ve slowed down to Jesus pace, filled up on his words that have become the joy and rejoicing of my heart, waited in the garden with Him for more than one hour…then nothing is wasted, I’m no longer anxious. When I wish my young adult kids would just go and make their lives, I am reminded of coffee and oil. He poured it out on me so I could pour it out on them. Cuz that’s what we moms do, we pour and we pour and we pour, but if we don’t let the One who turned five loaves and two fish into enough to feed thousands, feed us….we won’t find any oil at the end of the jar.
finding the better in the worse
She said she slipped on something. He said, “don’t take off your shoes.” He did, and felt the saturation of urine filled carpet seep through his socks and slip between toes. Thick air…smoke still heavy finding its way through every inhale, silently filling unaccustomed lungs. Mingled odor trails of an unattended dog and cigarettes making a trail through hallways and rooms…”be careful where you step.” Butts and ashes…piled high and falling off the edges of liquor filled glasses. “She wanted a party” he said, “we have to have a party…everyone loved her.” My soul was colliding with the woman’s I was led into conversation with. I didn’t want to go to this event. So I had prayed. I always prayed. “Lord, give me grace, help me to really love people tonight, give me something meaningful here.” I crave meaningful conversation. I avoid small talk at all costs. It’s too awkward. You’re forced to say things that you care nothing about….and worse yet, to people you care nothing about. Energy is wasted digging into deep brain pathways, searching for words that stumble along and awkwardly bump into each other….and then they land on a soon forgotten conversation. Except for this conversation. This one was different….a gift wrapped in words that crashed into my heart.
It was in the end she would call three times each hour. “I need to go to the bathroom” and so, driven by nothing more than an intense love for his bride of 40 years, he faithfully walked across the gravel drive that connected two homes…two hearts. His home the garage, her’s the home he had built for her. He had been forced to move out of the home he shared with this love of his…his asthma could no longer fight the grey thick swirl that hovered in their home. And so with every call, he went. He walked into a place he never thought he would go. You don’t think “for worse” when your tongue forms a promise woven into your heart. It’s possible to say it and even mean it, without thinking it. This man meant it. And so his days consisted of dying as he entered into the last days and weeks with his bride. The worst days…some would say, or were they “for better?” Every twenty minutes, with every step, a part of him would die as he walked from garage to house in order to gently lift his bride from the couch and carry her to the bathroom. On his walk he would lift his eyes to her once prized gardens, now overcome, tangled and choking through strong rooted weeds…a bloom here and there peeking through crevices of light…watching him, as if to say, “we’re still here, can you see us?” he saw them. It’s like our life, he thinks, some just can’t see the beauty in it, but I know…I see it. And then outside the bathroom door he would graciously wait…. and then stoop low to once again lovingly cradle his bride always careful not to cause pain, and walk her back to the couch.
Alcohol and dementia rob. There is no other way to make sense of it. And just as a thief vandalizes a property breaking into something that doesn’t belong to him, alcohol and dementia can shatter everything that built and sustained a precious life, two lives, multiplied into five. And it happens slowly and subtly, often going unnoticed. But once they find their way in, the victim is left vulnerable, exposed. Dignity disappears as fast as the liquor. And what’s left? I kept listening…
“She was green when I saw her in the hospital, her liver didn’t work anymore… but she knew us. We tried to get her to stop, but she would rather drink then eat…she loved being social that way….she had a DNR…this is what she wanted… but she waited for Mike, he was her favorite, and then she went.” Her words formed one long run-on sentence, because when a soul spills it runs over all things proper. But it’s more real this way. I want real. How old was she?” I asked. “Sixty-nine.”
Busyness can numb pain. Or maybe hands that were made to work find solace and comfort in moving and navigating through deep painful waters. It’s a way of coming up for air. Stillness doesn’t work in these moments. That’s for later. They say there are five stages of grief one must go through. I hesitate to put numbers to what the human heart experiences. That’s only for God to lift…. and to press in His time. there is no science to grief. Some stages are never entered, other stages last years before the next barges in uninvited one day. But hours after the loss of her mama she was just doing what her mom had taught her to do. Work and love people. This is what she wanted…. and so, she got busy. She got busy emptying those overflowing glasses, scrubbing down walls, teaming up with the others, ya know those ones her mom loved…hard, like her favorite, Mike. And they worked until, that once beautiful house and brilliant gardens surrounding it, shone once again, freshly cleaned, alive and fresh with outside air. “My mom was really into her community, they needed this.”
and as the sun was being tucked into a sleepy sky with a blanket of pink woven into white and blue… and the conversation was coming to a close I asked, “How did he do it?” She simply responded in the words of her dad when she had asked him the same question…”for better or for worse, honey… for better or for worse.”
God had answered my prayer. I wanted meaningful and I got it. What could be more meaningful then hearing about someone finding the better in the worse? Loving until death separated. Carrying a bride to the bathroom when skin is sagging, mind fading, tangled and confused….loving…really loving… until the end. This is love…and true love endures through the worse. What a gift to hear the story of a man who opened my eyes to the better in the worse…
invisible love 