288 pages
$12.99
ISBN: 0-9725719-2-2

This book is for those who know they don’t have it all together; life is crazy, difficult, disappointing, and sometimes downright impossible. It is for mothers and caretakers of special needs children who struggle with doubts, guilt, and crushed dreams. I survived, and you can too!

"In a compelling story of family crisis, Barbara Borntrager shows us that grace hides behind the disguise of human suffering. With rare honesty and fresh prose, she gifts her readers with an experience of raw emotion and gives insight into the question that haunts us all when we find ourselves in the dark: Does a loving God have plans for my pain?"

—Harry Kraus, M.D.

best-selling author of

Could I Have This Dance?

ABOUT THE AUTHOR

Barbara Borntrager is a wife, mother, part-time chaplain, and speaker.

She taught in the public schools in Virginia for fifteen years

and is currently employed in public relations with an insurance company.

ABOUT THE BOOK

I Know What It Is:

To observe your child. To note that he is different than the others. His behaviors are often irrational, unpredictable. To wonder and worry and visit various doctors, and hear a pediatric neurologist call it a neurological disorder you never heard of—Tourette Syndrome.

To see your child develop tics in his face, uncontrollable muscle spasms moving around in other parts of his body.

To see your child’s eyes roll up into his head and stay there and his head jerk violently from these neurological disorders which he cannot control.

To have a young child—six, seven, eight years old—ask you why God did this to him,

         "God must hate me!"

         "Why is it me and why no one else?"

         "Why was I born?"

         "I hate me and you must hate me too and God does too or he wouldn’t have done this to me."

To pray and believe for healing, only to see the situation worsen.

To have friends reject, make fun of, or simply to ignore and not include him—both non-Christian and Christian friends—because they don’t understand. No one does.

To live with an angry child who hates his illness and himself and takes it out on those he loves most—especially mom. The Doctor says, "Take it as a compliment. He knows you won’t leave him like all the rest."

To lie in bed with a teenager as he sobs uncontrollably for an hour or more. For him to ask, "Why must I live? Why must I be different?"

For him to tell you how he goes to the bathroom in middle school where no one sees him, to cry.

To lie awake all night in prayer, worrying over a troubled teenager.

To pray and read scriptures at midnight by his bedside, while massaging his tense, jerking back muscles.

To look at his quality of life and hear him say, "If THIS is life, then death would be better."

To receive repeated phone calls from the school that your child is not paying attention; he is disturbing others and acting out in inappropriate behaviors. (This same child is multi-talented and tested into the Gifted Education Program.)

To educate myself on Tourette Syndrome and Attention Deficit Disorder and observe the repetitive behaviors, obscenities, impulsivity, distractibility, and high energy.

To feel the expectations and crushed hopes of trying new medicines, as they alter the personality of your child and reduce him to lethargy. (He’s tried ten in the last seven months.)

To observe the painful side effects of medications, the total body tremors, nausea, and sleepless nights they cause.

To see him turn to illegal substances as a way to forget and block out the pain. And then to see him become withdrawn and angry and suspicious, living out a lie lest we parents find out.

I Know About:

Setting limits, making rules, and having them pushed to the maximum and beyond. That unpredictable behavior that leaves you walking on eggshells, lest whatever you say or do causes his boiling volcano to erupt.

Fearing the unknown. Beginning to know, but having no proof.

Hearing your child talk of wanting to die, and you talk life to him. But with him you feel his desperation.

Seeing the marks of a knife on his arm, the dark look on his face.

Experiencing the panic over satanic heavy-metal music, copying the suicide lyrics off a tape, discussing them with your child.

The helplessness when he talks of suicide and just how he would do it.

Committing your child to a psychiatric hospital for extended periods of observation and counseling.

Receiving a call from the Emergency Room at the end of a busy day of teaching, entreating you to come immediately and bring all the medicine bottles. It was an intentional overdose.

Standing vigil at his bedside with all the vital sign monitors blinking and calling a child back from a deep sleep and death wish to life—life that is yet another round of doctors and medications and rejections.

Watching that child’s hope flicker and gradually get weaker as the cycle is repeated.

Finding a suicide note and marijuana hidden in your child’s room.

I Know What It Is:

To know that I can’t criticize or judge others in their pain or sin, because I don’t know!

I don’t know what they face and are forced to live with.

I don’t know the battles they must fight daily to live life which I just take for granted.

To understand that sometimes the struggle is too great, the rejection too painful, that the spirit is willing but the flesh is weak, and in a desperate moment, they have been overcome. That doesn’t mean it is right—but I understand.

To lean on the Rock, Christ Jesus. I stay on the Rock. I stand, I sit, I fall, I stretch out, I grasp the Rock. Whatever, I stay secure on Him although rains descend, winds blow, and I am beaten.

To need space. To feel overwhelmed with the pressures of life. To feel controlled by the needs of another.

To leave. To get into the car and get out. Just to be alone. To drive over the West Virginia mountains. Then to end up at a doorstep, collapsing into the arms of a friend in tears. To cry your heart out with a safe friend.

To pray healing scriptures over your child. To believe God for healing. To have him improve, then have all hell break loose again.

To find the empty bottle, again, in the trash can. To be home alone this time. To go to battle with the enemy over the life of your child. To cry out "Jesus! Jesus!" To have the death spirit lift.

To live with the on-going struggle that continues as you vacillate between reaching out for support and prayer from friends, and then not calling. Not wanting to be a burden to others. And walking on alone, with God, through the desert storm.

To hurt, and hear other’s hurts, and to smile and honestly be able to quietly say, "It is well with my soul." To know that THAT makes no sense at all. But it’s true.

To discover the defective gene in other relatives of your husband, and to be angry with your husband and wonder why you married him.

To grimace, and wonder, if only...

And then the guilt—of course, it wasn’t his fault either.

And the backlash of reminders of all my own faults and imperfections that he has to live with.

To have your husband hold you, weep with you, pray with you, and reaffirm that nothing, nothing will tear you apart.

To have no words or prayers or resistance left in you, but to be mute before God. And to know, down deep, that He is sovereign.

To be at the altar on Sunday morning. Often. To silently affirm on the way to church one morning, "This day I am well and fine. Life and God are good! This morning I will NOT go to the altar. Regardless of the message, today I am well!"

And then when the invitation is given, to know again that God has spoken, feeling the tears, and in obedience, there I am again, knowing the love and support of God through Godly friends, acknowledging my own weakness.

To resent being controlled by another who is out of control.

To be furious with red-hot anger that he has stolen your life.

To hate your child. To hate what he does to you.

To have a child apologize. Apologize for wrong behaviors. For wrong attitudes, apologize for living.

To come home to him cooking a peace offering supper for the family, after his angry tirade of hateful words the night before.

To not know what the future holds, but to be at peace, because I know WHO holds the future.

To hear God’s voice repeatedly, even in the worst of times, saying, "I am in control. All is well." And knowing that the peace beneath the turmoil makes NO HUMAN SENSE.

To know this is obviously for His glory, regardless, simply because it makes no sense.

To lose my own health because of the stress and pressure. To experience TMJ surgery, panic attacks, loss of weight, loss of sleep, discouragement, depression, dizziness, and all day nausea.

To take a risk in obeying God—doing the unusual and unpredictable and uncomfortable. To leave a good, secure job which I enjoy. It makes no financial sense, no professional sense. But to "get out of the boat" anyway, as Peter did when he walked on water, because Jesus bids you "Come."

To stay at home 24 hours a day to teach and nurse your high school age child.

To devote your days to the care of a teenager who is confused and out of control.

To not have life turn out as you would have chosen, but to know deep down beneath the pain that you’ve found God in ways you never knew possible when life was smooth.

(Written when Jon was 15 and shared at a Women’s Retreat in the session, "Learning to Live with Disappointment." Jon had just returned home from the hospital after an intentional overdose.)

READ A CHAPTER

Chapter One

Emergency Call At School

The dismissal bell rang and my twenty-six third graders filed out the door as the school secretary’s voice came over the intercom.

"Mrs. Borntrager, please return a call from your husband at 432-2000 ASAP." I was mildly irritated. Jonas knows not to call me at school unless the house is burning or a worse tragedy! And that number? It didn’t register as any of the phone lines coming into his insurance office. I exchanged a few words with my classroom aide, scooped up a stack of papers to be run off on the copy machine, and headed down the hall to the library where faculty meeting would begin in exactly five minutes.

It had been a typical busy day in an elementary school classroom with hardly a chance to catch my breath. I had gulped down my ham sandwich at lunchtime on the way to a meeting. My Tuesdays were scheduled with no other breaks during the school day so I had hoped to visit the ladies’ room before faculty meeting.

Faculty members were congregating around the square library tables. A fine bunch of people. This was a rural elementary school I was proud to be a part of. Here was a place where I felt respected and affirmed. A place where I was in control. Eight-year-olds are honest and frank and willing to talk. And when YOU talk, they usually listen! We have routines. Sure, they are flexible, but the days are somewhat predicable. Predictable enough to provide security for freedom to respond creatively in the teachable moment.

Today was March 17. That explained the faculty refreshments. Frothy green punch and lime sherbet. Elementary teachers are notorious for observing holidays with pomp! I grinned at a colleague’s goofy long, green leprechaun earrings.

         "I had a lucky day," she announced cheerily. "The new math software arrived for you all just in time for this meeting."

         The telephone was situated on top of a file cabinet in a small crowded audiovisual room adjacent to the library. I dialed the number and waited.

         One short ring and the crisp voice of a stranger answered, "Emergency Room. May I help you?"

         I paused in a moment of stunned silence. This was not the familiar voice of Mrs. Showalter, the insurance office receptionist.

         "Emergency Room. May I help you?" The question was repeated. I must have the wrong number. I contemplated hanging up.

         "I’m returning a call from Jonas Borntrager," I spoke hesitatingly. There must be some mistake.

         "One moment, please." I heard a click. Elevator music waltzed into my ear, but only for a moment.

         "Honey?" It was my husband’s voice. Quiet. Steady.

         "Where are you?" I felt a pit in my stomach. Something was wrong.

         "I’m here in the ER. Jon overdosed. It was an attempted suicide. Can you come immediately and bring all his bottles of medications?"

         "How is he?" I was feeling unsteady and dizzy.

         "I don’t know. He’s unconscious."

         I collided with the principal on the way out the door, his papers spilling into the hallway.

         "I’m sorry," I gasped, scrambling to help him gather together his agenda notes and handouts.

         "Please, sir, will you excuse me from the meeting? It’s an emergency. Jon overdosed."

Mr. Bentley’s face went ashen. He understood the up and down roller coaster ride we had been living with Jon for years. The constant struggle of living with a carrier of Tourette Syndrome and Attention Deficit Disorder. The various changes in medications and accompanying side effects. The depression and threats of suicide. The erratic behaviors. Jon’s hospitalization in an adolescent psychiatric ward just one month earlier.

         "I’m so sorry. Would you like me to say anything to the rest of the staff?" His voice was gentle and kind. His arm around my shoulder felt comforting.

         "I don’t know much. Just tell the truth." My voice broke and I was beginning to tremble.

I grabbed my coat and lesson plan book and pulled the classroom door shut behind me, dashing outside to my car. Seconds later, I sped down the highway toward home. I couldn’t think. I tried to pray, but my mind was a jumble of thoughts. Strangely, I wasn’t surprised. Panicky? Yes, but not really surprised.

The Beast Tourette

Jon has lived with a beast called Tourette Syndrome all his life. He has repeatedly questioned the quality of his life, in a child’s words, of course, but spoken of the difficulty and futility of having to fight the disorders within him. He has observed the ease with which others his age think clearly, and his own inability to think rationally. He has noted repeatedly how his good intentions backfire on him causing misunderstandings with a friend or teacher. Often he has stated, "If I must live like this, then I’d rather be dead." Or, "Every time something good happens to me, I blow it! I wish I was normal!"

A Strange Isolated World

I turned into our driveway. The neighbor looked over from his mailbox and waved. The sun shone brightly. I tensed. You haven’t a care in the world, I thought grimly, and I’m walking toward death! Don’t you know that life isn’t all roses and smiles? I felt suddenly strangely disconnected from that close neighbor, one I had laughed with just the evening before. Now I felt isolated in a strange world of my own, a world which was spiraling away out of control into the unknown.

I left the engine humming as I burst into the kitchen. There lay the pill bottles on the table. I scooped them into my purse, checked to see that Jon’s pets were secured in their cages, and headed back down the lane. I recognized the tune the neighbor was whistling. I grimaced. Somewhere over the rainbow, were the skies really blue? Yeah, right! My God! Let Jon live!

A Change In Behavior

Within the last year he had become increasingly more withdrawn, secluding himself into his room for long periods of time. He was irritable, rude, and disrespectful. An aura of secrecy surrounded him. I didn’t know what was going on, but an ominous cloud hung on the horizon. The aroma of burning incense permeated his room, and other odors too. I couldn’t identify the scents. In my naiveté, I chose to believe only the best behavior from my son, unless proven otherwise. Circumstantial evidence I waved aside, evading hard questions which nagged at my consciousness. I tried to justify his tirades of anger.

A classmate of Jon’s had died in December by a self-inflicted gunshot wound. In his upper left arm, Jon had carved her name "NIKKI" and the symbol of a cross. Various sizes of pocketknives lay on his dresser. "For camping," he explained. I noticed a change in his choice of friends. On numerous occasions we found CDs and tapes with questionable song titles. Lyrics seldom accompanied the tapes. At the advice of the counselor, I painstakingly listened, hardly able to decipher the garbled words, rewound, listened closely again, rewound, and caught bits and pieces of lyrics screaming defiance to authority and the sweet release of suicide. Our attempts to discuss the messages with Jon were futile.

His response was quick and emphatic. "I don’t even hear the words. I just like the beat!" Conversation closed. He was angry, defensive, and non-communicative when confronted with themes cannonballed out by Nine Inch Nails, Metallica, Alice in Chains, and others. We attempted to set guidelines for our home. If the messages were satanic, explicitly sexual, defiance to authority, or applauding suicide, it had to go. He had twenty-four hours to get rid of it, or we would. He stated that he would comply. His attitude spoke the opposite sentiment, loud and clear.

Wild Careening Interests And Pursuits

A zoo of reptiles began to collect in his room. First came the fish. The old tank used in childhood days was pulled out of the attic, and a friend’s aquarium was added. The fish were graceful and colorful and required little care.

One week later, Jon returned from an overnight event with a friend, carrying a tightly closed box. "It’s a snake! It’s awesome! I bought it with my own money," he bubbled exuberantly. The Monte Python required an escape-free shelter, special electric heat rock, and trips to the pet shop for its live mouse meals.

Jon began building wooden cages for his pets. The cages were rough-hewn but attractive, designed with see-through glass or wire netting, depending on the inhabitant, and had hinged doors for feeding, petting, or cleaning. The bony, quick, beady-eyed green lizard blended into the foliage planted in his dwelling. His diet consisted of live bugs and flies. The hamster cage also was pulled out of storage as a rodent’s home. Various crawling creatures stared through the cages.

Jon’s energy for his pursuits was unbounded; his ideas were novel and shifting as the wind. His interests waxed strong and drove him, then waned and gave way to a new direction into which he dove, running with unlimited renewed energy. One week he begged, pleaded, and demanded that Jonas help him build a clubhouse for camping. He purchased all kinds of camp articles and clothing.

Several weeks later he was into stereo equipment, reading flyers from Radio Shack and Circuit City, calling repeatedly to ask questions about styles and prices, begging trips to town, buying speakers and amplifiers. Guitars topped the passion list from time to time. We purchased an acoustic guitar and took him to lessons. Jon bought an electric guitar and jammed away.

The craze passed when he needed the money for a Sega Game gear and several games, and sold the electric strings. After awhile the Sega lost its glamour, and he was back to pursuing another purchase, this time swapping prices with the Card Dealer to buy his baseball collection. He was again perusing the sale ads in the newspaper and flyers and shopping for an electric guitar in the music stores. He frequently owed money to a friend or a brother. He wheeled and dealed. His mind was constantly on the move.

I had heard "Choose your battles, Say ‘yes’ as much as you possibly can to a strong-willed teen" so often that I could no longer trust my own inner person. My sense of what was appropriate, of right and wrong, my likes and dislikes, these blurred as I attempted to accommodate my son’s interests. Pet snakes were not my cup of tea. I promised Jon if ever the python escaped loose in the house, he would pay my motel room until it was captured.

Jon pushed and challenged everything we said as parents. Finally, our house rules boiled down to two criteria: if it was illegal or immoral, it was off limits. Then came the boundary discussions over what constituted being immoral. "Look, God created the world and everything in it! He said that everything was good!"

Even legalities were argued. "Well, you don’t always drive the speed limit! Even 5 mph over is breaking the law. So what does it matter if I drink and smoke? I don’t care what you all think!"

Back In The Emergency Room

Jon’s favorite baseball coach Eddie met me at the Emergency Room door. His voice was gentle, his smile was genuine. We talked facts on the trip down the corridor. Eddie had arrived soon after Jonas. Together Jonas and Eddie had pieced together fragments of what had transpired. Eddie knows Jon, having taught him baseball fundamentals and pitching skills that enabled their Little League team to achieve the VA state championship. Jon respects Eddie. When Eddie talks, he listens.

Jonas stood at the foot of the hospital bed as we entered. Nurses watched the heart and pulse monitors. The IV was attached to his left wrist. A breathing tube was taped across his nose. His arms and legs were restrained to the sides of the bed. There was no movement except for short, loud, irregular breathing.

I leaned over the side of the bed and kissed a damp, clammy, cool cheek. "Jon," I whispered. "I’m Mom. I love you. Please come back. We want you."

I thought that this was the end, either the end of life, or the end of a long night of depression we had been walking through. Surely the medical professionals would have answers now, if Jon could regain vitality once again and live on. But it was only the beginning. The beginning of a long, maddening saga.

Searching For Answers

I didn’t understand why all this was happening. I may never know. I didn’t know a mother’s heart could stretch around so much anxiety, disappointment, and pain and still go on hoping and praying. I thought the God who hears and answers prayer, who loves our children even more than do we the parents, would deliver from distress. I believed that if you trained your offspring up right, they would not depart from the truth.

I sought answers. I went the "Why me?" route, the surrender route, the anger route, the intellectual, medical, psychiatric, and spiritual routes.

To us had been given the rearing of a child with disabling neurological disorders. We love, encourage, and applaud this talented, spirited son. We discipline, correct, and guide this child. His behaviors are as unpredictable as the weather. He is impulsive and distractible. He plunges into everything with his throttle wide open. He operates in superlatives. He is an ecstatic, enthusiastic beginner, a risk taker. When you begin to sigh in relief that he has found his interest niche, thinking that now at last he will settle down, he is wildly careening into a completely different direction. He is passionate and emphatic, sensitive and kind, forgiving and hateful, cursing and angry, crying like a baby, apologizing for his unreasonable outbursts, and justifying his actions because "I couldn’t help it!"

The journey has been a lonely one. Parents with "perfect" progeny don’t understand. How can they? I don’t understand either and I live with it daily. Addictions and disabilities are so daily. You cannot escape them. They flavor, or poison, everything that you do or think about, every decision you make, nearly every waking hour.

I’m discovering others along the way who have walked similar lonely, confusing paths. It is to you I write. I write not as a professional or expert in Tourette Syndrome and Attention Deficit Disorder. I write as a mother. Not as a super-mom, although I’ve tried that too. I write as a mom who makes choices to not give up even when there is no earthly reason or human energy left to hang in. As a mother who is often mute before God because my dearest dreams seem to be crushed. This book will be warm, honest, and non-technical. I am learning about disorders. I am learning ways of coping. I am learning how to take care of myself while taking care of my family. I am learning about growth and acceptance and change. I still struggle and feel afraid at times. I haven’t arrived. I forget and try to control others and everything when nearly everything is out of my control.

I’m learning to live in a home which is not always calm as I wish, but often chaotic. I cannot escape my family. One child is born with a neurological noose around his neck, and every other member of the family is affected. Sometimes we all scatter to escape. To escape senseless anger and impulsive, bizarre reactions. Demanding irrational questions and statements and incessant talking, noise, and activity.

Because deep down we care and are committed to one another come hell or high water, I’ll wager on love and unity winning out in the end. But there are no guarantees. I cannot force others to change. I cannot decide for my children how they will live and connect to each other in the future. Ultimately I only have myself, my own responses, to work on.

Still, I allow myself to dream big dreams for my child, for me, and for the rest of the family, even though the nightmare of reality some days threatens to shroud and destroy those hopes. Sometimes hope seems lost altogether in the task of staying alive and afloat in a fresh wave of exploding anger or rock bottom depression or uncontrolled ticking. My child is drowning again, and I’m being sucked into the turbulence with him.

In my better moments I believe the cliché to be true, "This too shall pass." Until then, love and obligation to my family, determination, and faith in a sovereign God keep me at it. He is fifteen years old, bright, handsome, athletic, bound to a dreadful, complex, senseless disorder, and very dependent upon me. One day I hope maturity will replace adolescence. With experience and time, unless he self-destructs, he will learn how to develop all his positive potential and how to deal with the negatives of his own unpredictable body, making them work for and not against him.

Then I shall sigh and shout, and cry and laugh, and celebrate and be free. But for now, I am mom. Jon’s mom. I cannot leave him. He is my child. I am responsible. A difficult, abusive husband I could divorce. But not a child. Whoever heard of an X-child? I am bound to him. I am mom. And I am held hostage. Mom held hostage.