On August 1, 1983, Laurel Greshel's world changed forever after a phone call from her doctor. After receiving word that her unborn baby had serious health issues, Laurel was overwhelmed. As she and her husband, Ted, struggled to accept the diagnosis that their daughter, Amanda, would be born with spina bifida, they had to slowly learn to say goodbye to "normal" and embrace each of their tiny newborn's accomplishments. Without any instruction book on how to raise a child with spina bifida, Laurel and Ted must learn to survive countless medical issues and several near-death scares with Amanda by leaning on their faith in God. As Laurel candidly shares experiences-both good and bad-that she has with doctors, nurses, teachers, family members, and friends, she offers a heartfelt glimpse into her painful struggles as she gives entirely of herself to help Amanda grow to her full potential. With the help of God's steady hand, Laurel manages to raise two other daughters, nurture her marriage, and cope with all the ups and downs of caring for a medically challenged child. In this poignant memoir, one mother describes her unforgettable journey through her daughter's difficulties, revealing the important message that God creates all of us just the way He wants us- perfectly made.

Amanda, Perfectly Made

A Caregiver's JourneyBy Laurel Rausch Greshel

iUniverse, Inc.

Copyright © 2012 Laurel Rausch Greshel
All right reserved.
ISBN: 978-1-4759-4921-6

Contents

Chapter 1 The Life-Changing Phone Call.............................................................................................1Chapter 2 First Comes Love, Then Comes Marriage: What Is Spina Bifida Anyway?......................................................3Chapter 3 Not Your Usual Newborn: Reactions to the Bad News........................................................................13Chapter 4 What Is This NICU? Life in a Foreign Land................................................................................22Chapter 5 Finding Our Way out of the NICU: What's a Shunt?.........................................................................27Chapter 6 Bringing Home the Broken Baby............................................................................................34Chapter 7 When Shunts Go Wrong.....................................................................................................37Chapter 8 TOTE-ing an Early Education..............................................................................................48Chapter 9 Give Baby a Year and See What She Can Do.................................................................................52Chapter 10 Should Amanda Have a Sister?............................................................................................59Chapter 11 Hoping Your Broken Child Will Bloom.....................................................................................65Chapter 12 Surgeries, Therapies, and How to Go: Learning to Stand..................................................................69Chapter 13 Looking for Help through Friends and in the Shower......................................................................76Chapter 14 Give a Three-Year-Old a Wheelchair: Walking Braces......................................................................82Chapter 15 The Family Grows Again: Sending a Four-Year-Old Off on a Bus............................................................87Chapter 16 Hand Surgeries and Massive Casts........................................................................................93Chapter 17 Why, God?...............................................................................................................100Chapter 18 Schoolmates Come and Schoolmates Go.....................................................................................104Chapter 19 Special School vs. Local School.........................................................................................108Chapter 20 More Surgery............................................................................................................112Chapter 21 Growing and More "How-to-Go" Issues.....................................................................................117Chapter 22 Amanda's Uniqueness: Strange Quirks.....................................................................................121Chapter 23 Farewell to Another Friend..............................................................................................125Chapter 24 Mom Grows Up and Heads Off to College: Amanda Stops Growing.............................................................127Chapter 25 The Most Terrifying Surgery of All......................................................................................131Chapter 26 A Surgical Fix for Bathroom Needs.......................................................................................137Chapter 27 Heaven Claims Another Friend............................................................................................143Chapter 28 Should I Get My Child a Service Dog?....................................................................................146Chapter 29 Making the Grade at School: Good-Bye, Friend............................................................................152Chapter 30 Please Listen to the Patient's Parents! Bad, Bad Shunt..................................................................155Chapter 31 Surviving as a Family When a Child Is Hospitalized: The Hospital Life...................................................160Chapter 32 High School or Special Education? Finding the Right Placement...........................................................165Chapter 33 More Amanda Quirks: Why Does My Child Do That?..........................................................................172Chapter 34 When the Caregiving Relationship Becomes Suffocating: Ways That Amanda Clings...........................................177Chapter 35 Amanda's Tolerance for Me and Her Desire for Independence...............................................................181Chapter 36 Playing the Part of Hospital Caregiver: Attention to Other Family Members...............................................185Chapter 37 Thinking about Her Dying................................................................................................190Chapter 38 Finding Doctors and Professionals Who Care..............................................................................194Chapter 39 A Caregiver Needs Her Own Identity: Coping..............................................................................197Chapter 40 Divorce in Families with Special-Needs Children.........................................................................202Chapter 41 Sick and Tired of Giving Care: Finding a New Home for Amanda............................................................206Chapter 42 Family Situations Are All Unique: Do We Move Her Out or Not?............................................................213Chapter 43 "God, Help Me": A Journaling Snapshot of Life with Amanda...............................................................217Chapter 44 Caregiver Duty 24/7: A Journaling Snapshot of Extreme Caregiving—or How I Almost Lost My Mind.....................225Chapter 45 Sharing Caregiver Duties Once Again.....................................................................................242Chapter 46 Getting Back to a Sane Existence: Finding Out a "Why" to Amanda's Purpose...............................................245

Chapter One

The Life-Changing Phone Call

Monday morning August 1, 1983, was when our whole world changed. My husband, Ted, had already started his day several hours ahead of me. As a salesman with a multistate sales territory, he had left before the sun was even up to make the long drive to Indiana. I had quit my job several weeks earlier and, at two weeks shy of being nine months pregnant with our first child, enjoyed the luxury of sleeping in and moving at a slower pace.

At just after nine o'clock in the morning, my phone rang. It was my doctor. In a very anxious and concerned voice, he tried to explain the findings of my ultrasound, which had been done on Friday, just before the weekend. It had been my one and only ultrasound, as these were the early eighties—before ultrasounds were done so often and routinely for pregnant mothers. I felt as though all the air had been sucked out of the room as I struggled to understand what he was telling me. Words, as if playing off a teleprompter, drifted by in slow motion: "very little brain ... very serious ... you must see a specialist in Detroit ... I don't know if you'll be bringing a baby home or not ... appointment tomorrow ..."

I cannot explain how I felt. It was like a waterfall of bad news had just poured all over me. I felt like I was suddenly drowning. A feeling of panic washed over me as I desperately tried to keep my head above water. As I tried to grasp the news from the doctor, I felt as though I was treading in deep, turbulent water. Everything became thick and slow, and I had such a suffocating feeling of desperation. I knew I needed to reach Ted right away, but these were the days before he or most anyone had a pager or a cell phone. I called the local office that he worked from and somehow made enough sense to the office manager, Margie. She said she would get a message through to Ted.

Margie was able to determine where Ted was making his sales call and connected with a receptionist there. Ted had pretty much just arrived and was immediately told he had an important call. Margie gave him the scattered details that she had gathered from me. Ted was also swept away by this flood of life-changing news and literally collapsed to his knees in front of the receptionist's desk. I believe he made a call to me, we had a confused exchange of information, and he got back in his car to make the long drive home.

The remainder of the day was a blur. I am not sure who I called or what we talked about. I waited alone through the long hours until Ted returned home. I can only recall an afternoon of tears and talks on the phone. How we even slept that night, I don't know, but the next day was to take us to Detroit and a specialist.

Chapter Two

First Comes Love, Then Comes Marriage: What Is Spina Bifida Anyway?

I've heard it said that "beginning is halfway to done." It has been many months, if not years, that I have struggled with starting this book. God has been patiently tapping me on the shoulder to start writing, and the tapping seemed to be occurring more often lately and with a little sprinkling of urgency. Fear has been my biggest challenge in starting. Not just the fear of trying to do something that I have never done before (actually write a book), but the simple fact that to begin something suggests an end. And since this book is about the life of my daughter Amanda, the end of this book suggests her end. Sickness comes more easily and premature death is more likely for handicapped children or anyone else challenged by serious health issues. So I am frightened at how this book may end, but am driven by personal passion and God's patient encouragement. So, this is the story of Amanda Lynn Greshel, and how she has shaped my life and the lives of family and friends around me.

In telling the story of the life of a person, I think it only fitting to give at least a brief background of the people involved in that story. My name is Laurel, and in 1977 I went away to Ashland College in Ashland, Ohio, because that's what you did after graduating from high school. You went to college. I was pretty smart and even got a scholarship. I had no clue as to what I was going to study, but hoped I would figure that out sometime in the next four college years. Having just gotten over a broken heart in a high-school relationship, I had set my mind on going to college and making as many new girlfriends as I could.

Two weeks after arriving on campus, I met Ted. I fell for him and fell hard. I know for sure now that it was one of those meant-to-be things. God's plan was for Ted and me to meet. Ted was, is, and continues to be my best friend, soul mate, partner, support, companion, lover, and husband till death do us part. Ted was a senior, and I couldn't believe with his blond hair, sparkling blue-gray eyes, and pleasant, witty personality, that no girl had yet snatched him up! Hardly a day went by after our meeting that we weren't together. We finished that year of school together, and by the next year's Christmas we were engaged. After almost two years to the day of our meeting, we were married.

I believe it is significant to know that Amanda grew up with two parents who were very much in love and committed to each other. That was a definite advantage to her, as it would be to any child in a family. It was good for Ted and me as well.

As with most couples who have been married for a time, we reached a stage where we were ready to start our family. By this time, we had been married about three years. We had worked, saved, and purchased our first house. We were ready to expand. Being a sometimes impatient person, I got angry when I didn't get pregnant right away. The anger quickly turned to irrational anxiety as I anguished over why I wasn't getting pregnant. We were ready for a baby and I wanted it now; I didn't want any problems or delays in getting what I wanted! I'm sure many of you who have dealt with infertility can relate to the tears shed at each passing month. But the doctor said to give it a year of trying before starting any kind of infertility treatment.

Before that year was up, we were expecting! The pregnancy test results confirmed I was pregnant, but I still found it surreal and hard to believe. I felt the same. My stomach was still flat. Was there really, truly, a little person growing inside of me? What would he or she look like? What would life be like with a baby added to our household? Would it be a he or a she? Typical questions, I'm sure, of most expecting couples. Since Ted was the only son of an only son, we were really hoping for a boy to carry on the family name. In hindsight, that was really of little importance to worry about. There wasn't a kingdom or a family business that was doomed to inexistence should we not produce a male heir. I think what God ended up giving us was far better.

For the most part, my pregnancy was fairly easy except for one little scare. Sometime in my first trimester, I started spotting. Having agonized over getting pregnant and now having a threat like this that might be the start of a premature end, I absolutely panicked. I called the doctor's office and was told by the sweet, hushed, voice of the doctor's assistant that sometimes "these things happen, and we have to let nature take its course." I didn't think that was much help at all, and I remember distinctly driving home from work after that little phone conversation and pleading to God to stop the bleeding. With tears in my eyes, I begged for this pregnancy to hold and pledged that I would welcome any baby God gave me.

When I learned later that my daughter's birth defect occurs in the first three to four weeks of pregnancy and that many times those embryos naturally abort because the body just senses that "something is wrong," I wondered, if I had not prayed so desperately, was that pregnancy originally doomed to failure? Was my body trying to get rid of something gone wrong? Did God hear my plea and rescue this pregnancy? This whole little dramatic scenario lasted maybe twenty-four hours, as the bleeding stopped within hours. I probably would have forgotten the whole incident—except Amanda was born with something wrong. As wrong and as mean as this sounds, there have been some challenging times with Amanda when I've remembered this short episode and reminded myself that one has to be careful what one prays for.

The remainder of my pregnancy was normal: a little bit of nausea at the beginning, typical cravings, and a normal weight gain for me. Keep in mind that this was 1983, and fetal ultrasounds were not routine. If an ultrasound would have been done early on like they do today, her birth defect would have been discovered right away. Fetal surgery, which is surgery performed on a baby still inside its mom, might have helped a lot. But my baby always had a strong, steady heartbeat, and I always felt her moving. After her delivery, I was asked countless times if I had sensed anything wrong or if I had worried that she didn't kick enough. Since it was my first pregnancy, those were challenging questions to answer, if not downright silly ones, as I had no other experiences to compare to! Everything felt just fine and normal to me all along. Because Amanda's birth defect includes paralysis, the doctors thought that perhaps I should have noticed that I wasn't kicked quite as much as "normal." Well, she moved all right, and must have made up for her lack of leg movement by keeping her arms swinging!

We were down to the last two weeks before my due date. At my checkup visit with my doctor, he must have sensed something. In fact, I remember his exact words were that "there's nothing scientific that I can put my finger on, but let's have a few tests to be sure everything is all right." Well, that was enough to get any pregnant mom's heart beating faster! It was sometime midweek, and he scheduled a stress test and an ultrasound for Friday.

Both tests were done Friday morning, and they went quite smoothly as far as I could tell. The technician who did my ultrasound was a man I knew from church. He was very quiet during the whole thing, but he was a quiet man in general so I thought little of it. I remember I asked him about what he saw, and he pointed at some gray image on the screen and said that it was some part of my baby. I don't really remember. Some twenty years later, I ran into him at the same hospital and finally spoke to him about how hard it must have been to see such a damaged baby, but not be able to say anything about it. It is up to the doctor to reveal any diagnosis or results, and it was this technician's job to do the test. My church friend still had a vivid memory of my scan and confirmed to me how difficult it was to say nothing.

I went home from my tests and heard nothing from my doctor all afternoon. Surely, if something were wrong, he would have called immediately. My brother and his wife came to visit from out of state for the weekend, and quite frankly, the tests and all associated anxiety were forgotten. No news is good news, right?

Monday we got the news, and that's when our world changed. Funny how we are always reminded to count our blessings and to give thanks for what we have, because life can change in the blink of an eye. Yet, most of us give our little patronizing prayers of thanks with subliminal greedy desires for all the additional blessings that would make life even better, not ever expecting to be one of those unfortunates who actually get dealt that life-changing event. For Ted and me, life was going just as planned. We had spent a lovely weekend with visiting family. Ted had a good job, and we lived comfortably in our home, which we had been fixing up since purchasing it two years earlier. Like a beautiful quilt being pieced together with fabrics that were chosen by both Ted and me, we had picked the pattern we wanted as we worked together constructing our lives together. We had created the perfect baby nursery with fresh wallpaper, waiting for us to bring home the perfect baby. The life we were planning, like a quilt, was starting to take shape when the fabric and design were suddenly changed on us. My Monday phone call from the doctor changed our design completely. As I waited for Ted to drive home from Indiana, we both felt our plans unraveling. The road had turned, plans had changed, and the previous design disintegrated before our eyes like fraying fabric.

Tuesday morning, Ted and I drove the twenty-five minutes to Hutzel Hospital in Detroit. Our home, friends, church, jobs, and frequented stores were all in our friendly and familiar suburban life that was twenty-three miles from the city of Detroit. To us, a trip to Detroit was like journeying to a foreign land. We were to see Dr. Marin, an ob/gyn who was a specialist. Funny that I don't remember what he specialized in, but I think it was high-risk pregnancies. Dr. Marin was a very kind man, who was soft spoken, of medium build, with dark hair, who got right down to business. The first step was a repeat of an ultrasound of my baby, which confirmed the previous abnormal findings. Apparently there was a great accumulation of fluid in her head, which was pressing on and compressing her brain. The technical term is hydrocephalus. The doctor was, however, quite confident that my baby also had spina bifida, and I remember him moving the scanner back and forth, over and over again, on my belly to try and prove what he wanted to see on her spine. He never got his clear picture. Next, he decided an amniocentesis would be helpful. An amniocentesis involves using a very long needle to withdraw some amniotic fluid from around the baby. Much can be determined from this fluid about a baby's health. Let me tell you, that needle was huge; and in the stressed-out, scared state that I was in, it hurt much worse than it's supposed to. Especially in late pregnancy, when amniotic fluid levels are greatly decreased, and a sampling took numerous pokes to get it right and to find a pocket of fluid to draw from. Throughout all the testing and stressful long day of unanswered questions, all I kept thinking was, "Get this baby out of me and start helping it."

Our parting conversation with Dr. Marin basically confirmed that our baby definitely had hydrocephalus and, most likely, spina bifida. He might as well have been speaking another language to us, as these were terms we had never heard of before. We listened to splashes of explanation from Dr. Marin about these foreign conditions that had afflicted our baby. In our naïveté and shock, we had no concept of the great medical issues we were facing; we tried to ignore the bad and focus on the healthy baby we were expecting. Okay, so maybe we might have to see our baby through a couple of fix-it surgeries, but we were still counting on the happily-ever-after. The final big question for us was to decide whether we wanted to continue to full term and deliver when I went into labor or to do a C-section right away and start treatment. There was no question for us. We already understood that a vaginal delivery could be traumatic for a baby whose head was already under pressure from extreme hydrocephalus. We also felt that we needed to find out exactly what we were dealing with to start helping our baby. At this point, we decided to continue under the medical care of Dr. Marin. He was, after all, a specialist in a big-city hospital. There was also the benefit of the Children's Hospital of Michigan being conveniently located down the street. Ted and I went home to try and rest. My C-section was scheduled for the next day.

To help you understand much of what happened next, I think it best to share with you a little medical background in regard to Amanda's birth defects. Amanda has spina bifida. With spina bifida, something happens during the spinal cord development. The vertebrae in our backs are hollow, with all the fragile nerves running through the core. The bony, hard vertebrae serve as both protection and container for all the long spaghetti-like strands of nerves from brain to tailbone. With spina bifida, one of those vertebrae fails to close completely into its tubular shape, and, of course, the nerves from defect on down kind of go "splat." They get broken and tangled, and as with any neck or spinal injury, the higher the "break," the higher the level of paralysis. A broken neck can make a person a quadriplegic. A back that is broken further down on the spine may result only in paraplegia. The same holds true for a spina bifida defect: the higher up the damaged vertebrae is, the higher up the paralysis on a person's body.

(Continues...)

Excerpted from Amanda, Perfectly Madeby Laurel Rausch Greshel Copyright © 2012 by Laurel Rausch Greshel. Excerpted by permission of iUniverse, Inc.. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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