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...