Everyday miracles: A day in the life of a special needs mom

Patience is passion tamed. (Lyman Abbott)

My third daughter was born on a Monday, after a long and exhausting labor. Her appearance was a little shocking: she had large olive-colored eyes and a rug of dark blond hair sticking straight out from her head."Monday's child is fair of face." Yes, she was a little beauty and drew admiring remarks from many strangers as an infant. You could tell just by looking at her that she had a mind of her own - from the very day of her birth. As soon as I saw her, I thought there was something special about this baby. For three years, I marveled at her tenacity, her passion, and her precociousness. Anything she put her mind to, she could do or learn. She mastered her alphabet and was writing letters long before her 3rd birthday. She was athletic and driven. Any attempt to control her, though, was a little like putting a leash on a lion.

Little did I know that all those character traits would be used to their maximum capacity in her little life. On her third birthday, she received her immunizations to bring her up to date before she had her tonsils removed the next week, in a desperate attempt to control her severe childhood asthma. She was never the same after those shots. Although it took 2 weeks for the doctors to catch up, by the next day I knew something was wrong and, after a week's time, I was desperate for an answer. It wasn't until she was almost comatose, unable to speak or move normally, that a team of doctors at the ER of the closest children's hospital diagnosed her with encephalitis, a horrible brain infection that was threatening her very life.

Amy was initially given a 50/50 chance of survival, and as the days went on without uncovering a cause for the infection, those chances decreased to 25%. She did lapse into a coma at one point, and was whisked away to surgery for more diagnostics that eventually confirmed that the infection was a rare vaccine-related complication. She spent four weeks in the hospital and many more weeks after that in and out as the months went on and other complications cropped up. Eventually, she was discharged unable to walk, but speaking again, and able to pedal a tricycle. The alphabet - indeed all those milestones she had precociously obtained - were hardly a memory in the aftermath of this ravaging disease. We were just glad she was alive.

For months she drank from a bottle. For a year she was unable to eat any food that wasn't ground to baby-food consistency. For nine months, seizures went undetected and we threw up our hands in exasperation when she would morph into an infant who couldn't be comforted dozens of times a day. She was still unable to feed herself by age 4. She didn't learn how to put her own clothes on again until age 5. At age 6, she was starting to remember some letters and haltingly sang along with the Alphabet Song, but she didn't recognize them on paper and still couldn't draw a symmetrical circle. She still sucks on a Nuk despite the teasing of her peers.

One thing she regained quickly was control of her body. Although she spent 2 very uncoordinated years relearning how to run, skip, jump, and walk a straight line, she was helped immensely by weekly physical therapy and her own determination. This, apparently, was something she could force her body to do by sheer will. Soon she was climbing too fast, jumping from too high, and racing down the road on a two-wheel bike going as fast as her little legs could pedal.

We learned that she was an amazing swimmer when she took swim lessons. She mastered strokes long before her older sisters and had no fear of the deep end (which is both a good AND a bad thing, as any mother knows!). This summer, she wanted to try soccer. We found an affordable camp through the city's Parks and Rec department. And lo and behold, she's a little soccer protégé‎ as well! On the first day, she was learning to head-butt the ball, dribbling through cones, and stealing the ball from some very frustrated other kids much older than her. There is no doubt the girl is an athlete - and a star athlete at that!

And while it has been sheer joy to find things she excels at, there has always been that underlying problem of school. I have certainly learned a lot about parenting a child with special needs. I've read countless books about how to help her control her intense emotions, how to teach her various tasks of daily living, and how to teach a child with learning disabilities their letters and numbers. We've written with our fingers with paint and in piles of flour and cornmeal. We've purchased countless learning aids. We've played with WikiStix and Playdough, wood letter parts and crafts sticks, sand and clay and plastic toys and sections of PVC pipe. We've used music, dance, we've laid on the floor making letters with our bodies. We've memorized several versions of the Alphabet Song, and, hilariously, she memorized the one in German long before English.

But what we couldn't conquer was the fact that the part of her brain that interprets visual information was no longer connected to the parts of her brain where her long term memory storage was. No matter what she learned in one day, by the next day - or even the next lesson - it was forgotten and had to be learned again. Letters were as foreign to her little mind as a secret code that couldn't be broken.

Every few months, I tried something new. I despaired many times. I imagined dark and dingy futures for this brilliant little child - maybe she could be a dog-walker, I thought. Or an artist. Maybe sports will be her ticket to a paycheck. I wondered if she'd ever be able to pass a driving test or fill out a job application.

I never let her in on the little secret that maybe her brain was so permanently damaged that she'd never have a "normal" life.

Instead, we focused on all the things she did well. We recently added soccer to the list, and she is looking forward to joining a fall league. Whatever team she joins, she'll no doubt be filled with strategies for winning. With all that determination, she is an excellent leader. As a third child, she's also learned to be a diplomatic and charismatic one that other kids love to follow.

We were facing another school year. I was trying to come up with new ideas for curriculum. We put the kids on a waiting list for a Montessori school. I had even begun to doubt myself - despite my PhD and all the doctoral classes I took on educational strategies and how brains learn and the "unofficial" degree I'd given myself in special education techniques in elementary school children. Maybe a special ed teacher could do better than I.

And then, a miracle happened. She learned the Alphabet Song this spring. It was a huge break-through. Next, she started to remember letters when she would see them - first the letters in her name, A-M-Y, then the letters of her brother and sisters names, and soon letters for her favorite activities, like "S" is for Soccer and it looks like a Snake. She amazed me as I watched her build little reminders for herself - almost like filing tabs in her brain that helped her call up the necessary information. She was actively "scaffolding" - linking new information to old information to strengthen the wiring that connected her conscious mind with unconscious memory. I could literally observe her building new pathways in her brain.

With all this new learning, we noticed a new development. When she focused 100% of that mental energy on learning letters, her body seemed to spiral out of control. She might look at letters while standing on her head, jumping on one foot, or climbing up and down off my lap. Her tongue stuck out at odd angles and sometimes her eyes even crossed! I called her neurologist and neuropsychologist down at Mayo, describing the new symptoms with a modicum of concern. The answer? When a child is building new pathways in the brain, so much of their physical and mental resources are consumed that behavior and physical control goes out the window. It is a common phenomonon among brain-injured children and makes them a classroom teacher's worst nightmare.

When the Montessori school called to say she and her brother had a spot - but none for the older two girls - I hedged. I simply couldn't picture this little girl in a classroom, even one she could move around in. No teacher on earth has enough time to allow one child to go berserk physically while trying to come up with the name of a letter. Not only that, but putting two kids in school and keeping two out sounded like a disaster in the making - even more stress for mom, not less, and probably two little kids would often fight to stay home instead of going to school.

I needed one last little reassurance, and I got it on August 6th. I needed to have confidence that I could teach this child successfully. That I wasn't the thing hindering her progress. And on August 6th, she crept into my arms and asked tentatively if I would teach her how to read. We got out the Speller I used with her two older sisters and began the first lesson. A-aaah-apple. B-buh-ball. C-kuh-cat.

She doggedly repeated my examples and followed along with her finger. On the second time through, her eyes began to burn with some new light. And by the end of that second time through, she GOT it! She understood, finally, that letters represent sounds and sounds put together make words and all these crazy symbols on the page were USEFUL for something! It wasn't just an abstract memory game anymore. She understood, for the first time, why it's important to learn to read. The muscles all over her body tightened. Her eyes widened. She began losing control over her arms and legs. And then it happened.

She looked down at the page, and made the sounds for each letter: C - kuh. A- aaaah. T- tuh. Kuh-Aaah-Tttuh. CAT. She looked up at me in wonder, and repeated the word. Then she ran screaming and hollering for a pen and paper. She wrote out the letters and said THAT MEANS CAT!! I CAN READ THE WORD "CAT"!!!!

After that light-bulb moment, she read the page over and over, sounding each word out. There it was - she COULD read. She COULD be taught this difficult skill! And in that moment, I watched her horizons open up in my imagination - and hers. If I can read, she said, I can do any job I want. I can even go to college where you teach, Mama.

Without a word on the subject, she had known all along that this difficulty she was having? It was a game-changer. And the game had finally changed in her favor. So, with the tenacity - bordering on ferocity - she used when she learned to walk again, learned to zip her pants, learned to climb steps on her feet not her knees - she is now learning to read. Every day we read together, and every day it gets easier. The new tracks have finally been laid, and now we are zipping along on them. What seemed impossible a week ago has become her new normal.

For everyone who has prayed for this little girl in the past four years, thank you. For everyone who has treated her like a normal kid, thank you. For everyone who believed she was capable of it, thank you. For everyone who suggested a new method or bought me another book or spent time with her teaching her these things, thank you.

I hope her brain keeps healing itself. I know she will continue to work around the roadblocks that are "built in". She is a master at finding another way. I can only imagine what a kid like this will turn out like as an adult. And I'm looking forward to that day with more joy and expectation than ever before.

How to squeeze the most out of every day

I watch children because I am a mom. They do one thing at a time, whole-heartedly concentrating and finding bits of joy as they go along. Their inner monologues aren't well developed yet because they are in such a stage of discovery. They finger things carefully, inspect what makes it work, listen to the sounds it makes, feel the textures under their hands.

Pausing to listen to an airplane in the sky, stooping to watch a ladybug on a plant, sitting on a rock to watch the waves crash over the quayside - children have their own agendas and timescales.  As they find out more about their world and their place in it, they work hard not to let adults hurry them.  We need to hear their voices.  ~Cathy Nutbrown

Children are the picture of being present in the moment, and their parents are usually the antithesis. We boast about our ability to multitask but are swarmed with regret for all the moments we did not savor when we lie down in bed at the end of the day. Yet we wake the next morning and repeat the cycle. Is it because we have so much to accomplish in each day? Is it possible to load the dishwasher, cook dinner, clean the counters, mop the kitchen floor, AND attend to the inevitable 20 questions our children will come to us with?

Being mindful - present in the moment - is the art of paying attention fully to one thing at a time. It's difficult when you first start, but it is addictive because it allows us to be free from responsibility for little moments throughout the day, sharing in wonder and joy instead of the anxiety of deadlines and schedules.

When you're in the pre-dinner rush, doing 3 things at once, and you feel the tug of a little hand on your leg, STOP. Just for a moment. Crouch down, touch their shoulders, look into their eyes. Listen to the inflection of their high-pitched voice, notice their expressions. Answer their questions and smile. You may avoid 20 more questions by attending fully to that one. You have also recaptured your own joy - a type of joy cooking dinner does not usually bring.

The present moment is all we're guaranteed. The past is gone and the future uncertain. But in each moment lies the gifts of life, and if we'll only take time to stop and take the world in - it's smells, sounds, colors, sensations, tastes - how much more joy we will squeeze out of each and every day.

"Present"

Check out some free mindfulness exercises here.

Those who taught ME in my 1st semester as a professor

We spent every Tuesday together, from the wee hours, up to our ears in bodily fluids and call lights and buckets of 0800 meds. Oftentimes I felt less like their guide into the world of clinical nursing practice, and more like a visitor on a unique and ethereal journey of 8 souls finding wings. Beyond the confines of the procedures and the protocols, I witnessed everyday miracles as they learned to love people at their most unlovable moments, to reach deep within themselves and toss away pride to get down on their knees next to someone's bed to offer a moment of comfort in a time of deepest sadness, to cry with someone who is crying, to laugh with someone who is laughing, to find a way to form words with someone who cannot speak.

They all have vastly different personalities...the class clown, the workaholic, the information geek, the helper, the girl with her ear always tuned for the code calls, the quiet one, the advocate, the one with a heart for kids. In 10 short weeks, I had the blessing of looking deeper into their lives, their passions, their hopes and their dreams. But it wasn't they who emerged changed and blessed...it was me. It is the great gift of teaching, that you embark forever on lifelong learning, a journey of constant discovery, a million "I don't know the answer" moments when you hunt for information right along with your students. A chance to stay abreast of every technical advancement, every scientific discovery, and every new way to bring comfort to the bedsides of hurting people, who we will always have with us.

It's been an amazing semester. One I am sorry to say goodbye to (although winter break is luring me in!). I can't wait to dress up in my regalia for the graduation ceremony in May 2014 when these eight girls walk across the stage and join me as peers in our grand profession that is half art and half science, the perfect union of left-brain, right-brain...and watch them as they reach for the stars in the many years to come.

Thank you, section 314, for taking me along on your incredible journey this semester!

Wise little owls

They know things, these children, that I didn't know when I was a child. They know all about how the ocean moves, how to get out through the break and ride in on the surf and not get swallowed up in the salty undertow. They also know all about lumps and what they mean.

Last Friday, Rosy noticed the lump on Amelia's neck because it is visible to the naked eye. We hadn't talked to the children about our concerns because it seemed brutal to involve them until we had some answers. Amy was, of course, marginally aware that something was wrong, because we kept feeling her neck every morning. But we hadn't said the "C" word aloud to any of them.

Rosy came running to me with horror in her big brown eyes and told me about the lump, asked me if I knew about it. I reassured her that I did. The tears sprang sudden, and she stuttered out her heaviest question, "Will Amy die as fast as Tally did, Mama?" Our dog, Tally, died just 2 weeks after we learned of her cancer recurrence, and really 3 days after we knew for sure that it was cancer. To the children, it seemed like a very fast death. I held Rosy to my chest, felt her whole body ravaged by the sobs, shaking under the weight of the world no 7 year old should be carrying. I assured her that Amy would not die in 2 weeks. Her sobs ebbed slowly away.

She looked up, this time her face serious but no longer frightened. "Okay. Well, what do we have to do about Amy's cancer then?" A rational question following all that emotion. Alright. If we don't have to deal emotionally with her dying right away, what needs to be done? How many doctors appointments are we talking? Will she lose her hair?

We talked long about the many things that can cause lumps. In her 7 year old experience, lumps are always cancer - they were for Mama and they were for her favorite pet. It was news to her that you could have a lump that wasn't cancer. But she also wanted to know about cancer. What type it might be, what the treatment for it is, how hard the surgery would be for Amy. How often we'd be going to the doctor over the next few weeks, and would Amy lose her hair?

She knows these waves, and she isn't overcome by them. It's an amazing thing to watch, as a mother. I was traumatized when I was just about her age, deeply, in ways that stunted the way my brain grew up. My reaction was to shut off the emotional switch as often and as quickly as possible. I've never been much of a crier. I've been a brooder. It wasn't until I entered counseling at 31 that I started to learn why I acted that way. I lacked a skill known as "Wise Mind". It's the ability to react emotionally and rationally at the same time, using both sides of your brain to respond to a problem. My 7 year old daughter can do this. I still have to practice it.

If you experienced abuse or trauma at a young age, this might be something you need to work on, too. The trick is to allow yourself a modicum of emotional response, followed quickly by a rational list of options for responding to the problem. I actually consciously think, "I need to enter Wise Mind". Then the tears flow for a few moments, and then I get started on solving the problem. It's allowed me to cope better in the moment because I don't bottle up emotions anymore. They come out right away. And I can still view myself as a rational person, just like I always have.

If you'd like to read more about Wise Mind, visit this link to a video walking you through the technique.

Love > Fear

I sat still, my legs drawn up under me, against the purple wall in my mother's living room. I remember heaviness coiled tense in my chest, up through my neck and aching behind my eyes. In my limbs, a happy buzzy sensation, like I feel when I'm deeply thankful. My niece and son came running over and clambered up, my husband busy taking photos, with the white of the flash bouncing off the glittery ceiling. My lips pulled back tight over my teeth, my eyes slowly trying to take in the chaotic scene of family and gift opening frenzy, a heavy compote of Christmas scents from the buffet filling the air.

Perhaps it is the many years of training and practice that makes me think of emotions as a linear thing. After all, the FACES scale for pain, the one we use in children, runs a spectrum from joy to extreme sadness, as if the two never coexist in our chests, in our hearts, behind our eyes.

What if half of your face can say something, and the other half another? I scan through a list of emotion words, trying to capture those feelings of the cool, coiled snake in my chest and the sweet joy of those children on my lap. Happiness and satisfaction. Words that describe love. Nervousness and apprehension. Words that describe fear.

Does that explain the lineless half smile, pulled tight over my lips, the widened eyes, the stilled forehead?

I have a sticker on my van that says "Love > Fear". The two emotions I felt most intensely throughout the holiday celebrations with family this year. Perhaps what kept me going through the holidays is this very principle, which stands out so clearly from The Message:

God is love. When we take up permanent residence in a life of love, we live in God and God lives in us. This way, love has the run of the house, becomes at home and mature in us, so that we're free of worry on Judgment Day—our standing in the world is identical with Christ's. There is no room in love for fear. Well-formed love banishes fear. Since fear is crippling, a fearful life—fear of death, fear of judgment—is one not yet fully formed in love. (I John 4:17-18 The Message)

The horrible, terrible...laundry.

I have been known to tell my children that, if we lived in almost any 3rd world country, they would have 1, maybe 2 outfits. They would wear them all week and then I would scrub them down in a washtub, and leave them playing naked in the house while I scrubbed 6-12 outfits in the tub outdoors in the baking sun. And, if we were middle class, I would also have a maid.

Pile #1 of clean laundry

That's not how middle class works here. My kids have scads of clothes and I seem to be forever buried in laundry. I remember being a country kid with a healthy covering of dirt most of the time, wearing outfits 2 or 3 days at a time. Our social standard now is sparkling clean kids in perfectly matched outfits. I had someone offer me information about the food stamp program while in line at the grocery store once with my kids. Just because their clothes didn't match. And likely at least one of them had traces of breakfast on their face. Or hands. But still - you're kidding me! How presumptive.

Clean and somewhat folded

Trust me, lady in the grocery check-out line, I have lots of clean laundry. If you would care to come fold and put away my laundry, perhaps you would no longer be offering me other special services. You would just pray for me.

The dirty laundry is everywhere

It's as ubiquitous as say, floorboards. Dirty laundry has five places in my home but my children still lack the memory to put it there. A walk-through of the main floor sometimes yields 6-7 pieces of laundry of unknown cleanliness.

But God washes the picture fresh, shines His sun right through the linen hamper, glowing beauty up from the ashes of my messy home.

A little boy waits in the hall for his shots

God is teaching me to be patient.

One of His main tools is my laundry.

Both the clean and the dirty.

Just like the power of rain washing endlessly on our homes, our streets, all of our man-made structure, God's healing spirit slowly strips us of our "Good Christian" paint and we see the ugly gray concrete underneath. But that's not what we should see. Because now we are wearing the glowing white perfect robe of Christ's grace. Whatever chips of "self" remain are just clinging to the ugly texture of our gray concrete souls, unwilling to give those last pieces up, thinking that somehow they cover us. No, they just make us look silly, or strong, or "spiritual" or lost. Depends on the kind of paint you're wearing. I don't want paint anymore, I want the billowing white of Christ to cover my dirty curbs.

Cashier who reminded me of my Grandma

Once you understand that we can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.

When we were utterly helpless, Christ came at just the right time and died for us sinners. Now, most people would not be willing to die for an upright person, though someone might perhaps be willing to die for a person who is especially good. But God showed his great love for us by sending Christ to die for us while we were still sinners. (Romans 5:3-8 NLT)

That is seeing the world upside down. That is seeing beauty where the world sees ugliness. That is rejoicing as you fold each piece, attacking the endless mountainous work of mothering.

Now, where is my maid???

My pregnant cat, my object lesson

Lessons from a cat. Who knew? I know they're good for cuddling, they love to drink my half and half up at an unreasonable rate, and their claws hurt. We have two outdoor cats: Tom Cat (gender obvious, thanks to the 4 and 3 year olds who named him after Tom Kitten in the Beatrix Potter books); and Tiggy, a very small, tame cat who is currently carrying a LOT of kicking kittens in her belly.

What am I learning from my pregnant cat, you ask?

First, she is teaching me about seasons. In cat language, I would change Ecclesiastes 3 to "a time to bounce and a time lie around". This pregnant cat, usually almost kitten-like in her bouncy demeanor, has laid in the same spot, changing position frequently for the last week. She literally only gets up to eat, even that she does with a grunt and a large physical effort. I am not good at this, lying around in the right season. No matter the season, I have a billion and one projects lined up and crowding into both my free moments and my over-stressed brain.

Secondly, I noticed that even cats have Braxton-Hicks contractions. This poor cat has been having visible contractions for weeks now. What this teaches me is that even animals must go through significant pain and labor for the most valuable things in life. I am going through a season of depression, anxiety, loss, grief, and turmoil. I am reminded of Paul's words: For we know that the whole creation has been groaning together in the pains of childbirth until now. And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. (Romans 8:22-23)

This verse tells me two very important things: 1) it is okay to groan, moan and lament the bad things that happen in this world - indeed, it says the whole world groans together. And 2) there is a light at the end of the tunnel, when we are adopted and redeemed. Sometimes it seems like we are trading one sorrow for another. My pregnant cat will probably feel so when she has relief from her labor but then the troubles of toothed nursling kittens. I feel so now, to some extent, as my brain begins to function more normally and I take on care of my house and children bit by bit.

I can't wait to put up pictures of the newborn kittens!

Excerpts from my Gratitude Journal #674-684:
674. Making the safe decision
676. Catching up on sleep
677. A hospital piano that is IN TUNE!
679. Quiet - God wakes me at 5 a.m. to spend some time with Him
683. "If I must boast, I will boast of the things that show my weakness" (II Corinthians 11:30)
684. "So to keep me from being too elated, a thorn was given me..." (II Cor. 12:7). For me, as well - cancer, depression, heart trouble - all my medical issues taking their turns ravaging my body and soul.

When I thirst

I can't mess up God's plan. My failure doesn't ruin me and my achievement doesn't elevate me. This whole thing, life, is not about me or you, it's about Jesus. The story of His love is reflected in the lives of His people, not by what they do, but by what He does with what they do. Grace twists sin into something that reflects God's love and mercy. ~Serena Woods, Grace is for Sinners

One thing I learned in the psychiatric ward is that God's word is precious to the thirsty. Not the prideful, the upright, the perfectionists, or the theologians. While it may be precious to them, it is through the testing of faith by fire that we learn to long for that long, slow drink of God's streams of living water.

I was thirsty the whole time I was there, poring over Scripture from Lamentations to Revelation, on a treasure hunt to find the gold He'd left there for me in this verse, that verse. I saw it in the biker who read a pink Bible for 3 whole days before returning it to me. I saw in the hunger of one woman's eyes as she longed for the answer to her question: when have I pushed my Savior too far, enough that He'll refuse me, just like everyone else in my life has done?

The answer to all of it is Grace. Simply Grace. God gave it freely, gives it freely, and we just drench our thirsty throats with His liquid gold. It's so much less about what you're accomplishing or what you're achieving, or even dreaming or dreading. It is simply the act of giving thanks for what He has given you. Whether it be your 1,000 Gifts list from Ann Voskamp's miraculously glorious idea, or recognizing your thirst and quenching it. Sometimes I thank God for a cigarette, the 5 minutes of absolute relief from anxiety and tumult of spirit one cigarette brings. Sometimes it is for the sun that I praise, those golden, long unharvested rays of spring soaking deep into my core and warming me from the inside out.

And what if you're a perfectionist like me, brought to her knees through inability to be perfect? Or a theologian unable to unlock the true meaning of a Scripture, even after studying the Hebrew and the Greek? What if who you are right now is upright, righteous? Is there no sin you repent of? Nothing for which you can give thanks that you did not do with your own two hardworking hands and a heart beating overtime to God's drum? What if you are proud, of those accomplishments, the medals you earn on the way to the Throne? When we get there, some will burn into nothingness, others will remain as gold, silver and precious stones (from I Corinthians 3). The same fire burns for the works of the righteous, the proud, the "perfect", as it burns for the homeless, those in rehab, those struggling with nightmares, curses, and laments. All men created equal. God loves us all, and grace conquers all.

In the deep of this pit, I soak up His words that He needs me, wants me, believes me, has redeemed me and called me worthy. Worthy to carry His words to a thirsty world. What are you bringing today to the thirsty world? I am just bringing my jumbled brain, my social anxiety, and my heart on fire for Christ.

O soul, are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Savior,
And life more abundant and free!

Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

Through death into life everlasting
He passed, and we follow Him there;
O’er us sin no more hath dominion—
For more than conqu’rors we are!

His Word shall not fail you—He promised;
Believe Him, and all will be well:
Then go to a world that is dying,
His perfect salvation to tell!
~Turn Your Eyes Upon Jesus, Helen Lemmel, 1922, sung here by Alan Jackson~

The story of this battle

Jesus took me on an amazing journey in the past 2 weeks. After struggling, struggling, struggling with depression for months, trying this medication and that, I was suddenly plunged into the depths of the dark pit of my own past sins and Satan's wrenching grip. God felt so far away, like a satellite makes it's slow orbit around the earth - He, making His silent orbit around me a million miles away, just checking in those darkest hours of the night. Faith fit me like a clumsy second-hand coat and I couldn't find my battle armor. Faith is lost, and is carried away out of their mouth (Jeremiah 7:28b).

I hurt myself, people who care deeply about me, loving and respecting and believing, sometimes, I think, in the "writer Genevieve", not the real and battle-worn Genevieve standing before them. The cost of believing in little snippets of joy is that sometimes the darkest sorrows spin underneath beyond the glimpse of anyone but yourself. I should have reached out for help much sooner. I never want to forget that. My past sins seemed to surround me, drowning out hope. You summoned as if to a festival day my terrors on every side (Lamentations 2:22 exc.).

And so, dying on the vine, hope squashed and faith seeming nothing but mirage, I asked God for heaven instead of this bleak earth. Those people I hurt - they were crushed this time. I broke the trust of my caregivers at the hospital where they tried to titrate medications to bring me out of the fog of disillusionment and grief. As I saw what I had done - laid waste to every dream I've ever had, forever scarred those I love best, traded ashes again for beauty - I never wanted to do that again.

A dear pastor came and spoke Truth into my weary head, and I began to sense myself re-entering the war for my body. My soul claimed long ago by the blood of the Cross, Satan was there to steal my body and my story so that I could never touch another person with the power of my life redeemed. My pastor pleaded with me, Beloved, I urge you as sojourner and exile to abstain from the passions of the flesh, which wage war against your soul. (I Peter 2:12)

But warfare is infinitely more difficult than giving in to Satan. Therefore, my dear friends, as you have always obeyed—not only in my presence, but now much more in my absence—continue to work out your salvation with fear and trembling, for it is God who works in you to will and to act according to his good purpose. (Philipians 2:12-13)

I slipped again, and the pain was new for all surrounding me. In a solitary room, four green walls and a bed bolted to the floor with slots for restraints, without Bible or friend to comfort, just two red-eyed video cameras analyzing my every move, I praised God for His foresight as I had memorized Psalm 73:26 the night prior: My flesh and heart may fail, but God is the strength of my heart and my portion forever.

I leaned on Deuteronomy 30:19-20a: I call heaven and earth to witness against you today, that I have set before you life and death, blessing and curse. Therefore choose life, that you and your offspring may live, loving the Lord your God, obeying his voice and holding fast to him, for he is your life and length of days. However mindless and mind-numbing those days in the solitary room were, me pacing around the bed, stretching, doing push-ups, even singing at the top of my lungs in the corner ampitheater squeezed tight into what felt like a more private space - God was at work.

The day I chose life, when death was just another slice away, I sensed God knew my limitations, for He has promised that He is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, so that you will be able to endure it. (I Corinthians 10:13)

He stepped in to lift me up and fight for me. I felt like we were still flying low, but I could feel the wind in my hair, feel the flutter of the eagle's wing feathers as we floated above the battle and looked down at the vast sea of sorrow I had thought was so large. Now so little from the vantage point on His back. Yes, He seemed far away, as though He were the satellite in meaningless orbit just glinting in on the darkness of my days, as it says in Isaiah 45, In a surge of anger I hid my face from you for a moment, but with everlasting kindness I will have compassion on you.

But hope was not far off on a distant shore over an uncrossable ocean of tears.

 For the mountains may depart and the hills be removed, but my steadfast love shall not depart from you, and my covenant of peace shall not be removed,” says the LORD, who has compassion on you. “O afflicted one, storm-tossed and not comforted, behold, I will set your stones in antimony, and lay your foundations with sapphires. I will make your pinnacles of agate, your gates of carbuncles, and all your wall of precious stones. All your children shall be taught by the LORD, and great shall be the peace of your children. In righteousness you shall be established; you shall be far from oppression, for you shall not fear; and from terror, for it shall not come near you. If anyone stirs up strife, it is not from me; whoever stirs up strife with you shall fall because of you. Behold, I have created the smith who blows the fire of coals and produces a weapon for its purpose. I have also created the ravager to destroy; no weapon that is fashioned against you shall succeed, and you shall confute every tongue that rises against you in judgment. This is the heritage of the servants of the LORD and their vindication from me, declares the LORD. (Isaiah 54:10-17)

Torment fled from my nightmares, and terror from my flashbacks during the day. Turn to me and be saved, all the ends of the earth! For I am God, and there is no other. (Isaiah 45:22) I began to rest well again, enjoy my days, and smile. God gave me this verse on one of my last days in the hospital, as I prepared to move my new-found confidence back out into real life and beyond the cloistered walls of a monitored unit of the hospital. Restore our fortunes, O Lord...Those who sow in tears shall reap with shouts of joy! He who goes out weeping, bearing the seed for sowing, shall come home with shouts of joy, bringing his sheaves with him. (Psalm 126:4-6) Shouting for joy still sounds like a pipe dream but I do trust this God who once again showed up in my life in amazing ways.

It is well with my soul,

Thou has taught me to say...

To you, O Lord, I cry, and to the Lord I plead for mercy: What profit is there in my death, if I go down to the pit? Will the dust praise you? Will it tell of your faithfulness? Hear, O Lord, and be merciful to me! O Lord, be my helper!” (Psalm 30:9-12)

Excerpted from my gratitude journal, the weeks in the hospital, #312-541:
312. There is nothing in my room sharp enough to cut through skin
313. God only turns His face for a short time (Isaiah 54:8)
315. I am learning to ask for help.
317. I learned more about spiritual warfare now more than ever before
319. Being surrounded by the shields of faith of friends and family so fiery darts can't reach me.
322. What profit is there in my death? (Ps. 30:9-12)
324. A big bad biker dude borrowing my pink Bible to search for God
330. Scripture always ready on my tongue, even when I am a victim of the battle (thanks, Mama and God).
332. The gorgeous strawberry blond crowning the tired and lonely head of a teenager
335. The great, great God who stilled this anxious heart and fought for my life, sending terror far from me.
411. Souls won for Christ while I offer His words to them with my bleeding hands, spoon it into their chalk dry mouths and thirsty souls
537. Holding Mama's hand during my discharge planning meeting
538. Grandparents willing - nay, happy! - to help with my brood
539. Kristy always ready with a hand to hold and a prayer on her lips for me
540. The sweetest sentences I've ever read, from my Dad-in-law and Nate York
542. Sweet Sara picking me up with belly laughs and delight

Necessary changes

(That's right. I'm blogging about school on a Saturday.

In case you hadn't noticed, by way of my 20 years of

schooling, I am a school junkie. I do school on Saturday.

That's just how I roll.)

At the very time she needs it most, school often gets pushed to the outskirts of our day. I'm sure it's an irony many parents have faced before me...the child with special needs is so overwhelming it is difficult to even attempt to meet them.

In November, Amelia was diagnosed with two things: Episodic Ataxia, a disease that causes her to lose balance, depth perception, and speech coordination at random times throughout the day; and a sensory processing disorder, which basically means that she either can't sense or doesn't react to stimulation (touch, smell, taste, see, hear) the same way you and I do.

Both of these issues mean that we've had to translate what was a very Type A mom, paper-and-pencil, books and workbooks sort of school into a very hands-on, flexible school that takes lots of breaks and only works for short periods of time.

Bring on the "manipulatives"! We are blessed to have a teacher for an aunt, so we get lots of great school supplies for very little expense. A math manipulative set means that, in the same 20 minute period, Katy can work on her fractions; Rosy her addition and subtraction; Amy her color sorting and counting skills; Caleb pattern recognition and numbers.

I think that, in hindsight, they're loving school more than ever before. The changes have been for the better for all four of the kids. My son will certainly be blessed by the changes we've made in how we "do" school, little go-getter that he is.

And so school keeps on going, in the cracks of the day, fit in when we have a moment, whether I just hopped out of the shower, or haven't even had time to shower yet this day. Sometimes during meals, and always it is an everyday miracle, it works even though I am desperate and overwhelmed, and the kids learn despite all my failings.

Amy's therapists have taught me that engaging her large muscles and using deep pressure help Amy engage in the many smaller, detailed tasks I ask her to complete as part of her rehab program. This "steam-rolling" activity is one of her absolute favorite school time-outs. Today it blended perfectly with what we were learning: the dimensions of objects - height, width, and depth. We had fun trying to turn the 3-dimensional children into paper dolls (Katy would quickly report that it didn't work. She *may* be a realist, Type A mom herself someday).

"Squishing" Amy's limbs with a balance ball.

At the same time I am finding new ways to help Amelia "engage" in learning, I am being forced to engage, too. I have always loved a good challenge, and this certainly is a challenge. The routine never gets boring, because we're constantly switching things up.

The parent is so often just a bigger picture of those she is parenting. Like Amy, I need God to speak through a megaphone in order for me to listen. Enter cancer and the suffering of Amy's illness. Like Amy, I need God to use deep pressure to help me focus on the details. Like Amy, I need frequent breaks, times when I can cry out my questions. Like Amy, the approach has to constantly change...so God forces change into my life to open my eyes to my sedentary faith. Just when I think I've got something mastered, He adds a new element for me to figure out. Just when I get comfortable at my current stage, He demands more from me.

And so, with a big God who cares to tailor my training program to my specific special needs, I will never stop learning.