Because of Love: Now and Forever

By Janice Grow Hanson

The touching true story of how a mother’s love, faith, and determination saved the lives of her two physically challenged children.  Tonya and Cody are the only two known in the entire world diagnosed with their rare and unique syndrome. Janice’s story showcases the incredible love of a mother who rose above all odds to ensure t

• Language: English
• Publisher: Linden Avenue Press
• Release date: Feb 29, 2016
• ISBN: 9780996984324

Janice Grow Hanson

Janice Hanson was born and raised in Salt Lake City, Utah. As a teenager, she held many school offices and was noted as one of Utah Top Teens by Salt Lake Tribune. She has served on the PTA board and has held many leadership positions in various organizations of her church. Janice has been a keynote speaker at many adult groups and youth conferences. She and her husband, Dennis, have five children, eighteen grandchildren, and two great grandchildren. Dennis and Janice both retired from the University of Utah and enjoy spending time with each other. Their family is the highlight of their lives.

Book preview

Because of love

(Now and Forever)

Because of love

(Now and Forever)

By

Janice Grow Hanson

Copyright © 1997,1998, revised 2002,2016, Janice Grow Hanson

Printed in the United States of America

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means-electronic, mechanical, photocopy, copy, recording, or any other-except for brief quotations in printed reviews, without the prior written permission of the publisher, Linden Avenue Press.

Original Cover: design by Janice Grow Hanson; digital artists, Layne Haacke, Zygote Media & Edward Bateman,Borge B. Andersen & Associates.

Cover and Photo Revision: Andrea Tunbridge, Andrea Tunbridge Photography Published January 2016 by:

Linden Avenue Press

P.O. Box 711645

Salt Lake City.Utah 84171

www.LindenAvePress.com

LibraryofCongressControlNumber: 2002116731

ISBN 978-0-9969843-1-7 Paperback

ISBN 978-0-9969843-2-4 ebook

First published 2002 by KiwE Publishing, Ltd

This work is not an official publication of The Church of Jesus Christ of Latter-day Saints. The views expressed herein are the sole responsibility of the author and do not necessarily represent the position of die Church or die publisher.

The true story of how a mother's love and faith drew upon the powers of heaven to save the lives of two medically challenged children—a touching story of an eternal circle of love.

Tonya and Cody will inspire, humble, amaze, and engross you through every page. Reaching adulthood was a miracle almost beyond belief. Janice Hanson's account also reveals her triumphant mother's instinct to cling with determination and faith, to every hope and possibility. You will always remember Tonya, Cody, and the family's story of trauma, triumph, and mostly—love. It has it all adventure, ordeal, faith,—it's even a romance in the west!

To my Heavenly Father — How Great Thou Art!

To Dennis, my cherished husband and dearest friend.

To our children Tonya, Jed, Mindy, Chad and Cody.

No earthly possession is worth more than your souls.

You are my treasures, my diamonds, my jewels.

CONTENTS

Foreword

Introduction

Acknowledgments

Preface

Comments

Chapter 1 Why Can't I Have Her?

Chapter 2 Home at Last

Chapter 3 Looks Aren't Everything

Chapter 4 The Master's Touch

Chapter 5 Eternally Ours

Chapter 6 Paying the Price in Pain

Chapter 7 A Child's Faith

Chapter 8 A Time for Coping

Chapter 9 A Gift of Love

Chapter 10 Life Challenges = Rewards

Chapter 11 Answers to Prayers

Chapter 12 A Time for Spiritual Growth

Chapter 13 Thy Will Be Done

Chapter 14 Dealing with Differences

Chapter 15 New Beginnings

Chapter 16 Celebrating Life

Chapter 17 The Fulfillment Of a Dream

Appendices

Appendix A Sunshine 'N' Rainbows: Poems by Tonya Hanson

Appendix B Selected Media Attention and Family Recognitions, Chronologically Arranged

Appendix C Glossary, Alphabetically Arranged

FOREWORD

Since biblical analysis began, thinkers and scholars have delved into the meaning of the Book of Job. In its simplest form this highly complicated story reflects on the way human beings cope with life's many challenges, usually called by most life's trials and tribulations. The questions of faith raised by this ancient book continue to resonate with us to this modern era. In the same way Because of Love illustrates the beauty of faith in guiding and leading a mother and her family through the challenges of present-day life. Here, though, life is embellished and impacted by singular challenges—the birth and care of two unique children. While this book is clearly about an entire family and not simply the children, the central place of Tonya and Cody in the Hanson home is the essence of Janice Hanson's inspiring work. As I read through the stories and events, spanning over four decades, I was continuously exposed to themes that I was not even aware of in my role as a physician helping to care for Cody.

One significant theme that emerges throughout the book is the resilience possessed by Tonya and Cody. Each challenge, each setback, seems to refuel energy and enthusiasm for the next. This resilience is certainly a gift from Janice and Dennis Hanson and their spirit and faith because, as she shares, of love. And yet while the author, the mother, is always present, always holding the Hansons together, all the members of the family step forward at some point to play a role, and to demonstrate their love, their resilience, and their place in the family legacy.

A second theme throughout the book is the notable place of poetry and verse in providing meaning to the happenings. I could not get enough of Tonya's poems. She exhibits wisdom beyond her years, perhaps induced by her experiences.

Tonya and Cody's medical challenges were far beyond what anyone should experience in a lifetime. Yet their spirit shows not simply acceptance, but an appreciation of life and the people around them. The experience of their spirit was for me contagious (to use a medical metaphor). Despite the fact that one component of their unique syndrome includes decreased facial expression, Tonya and Cody embody expression in every sense and meaning of the word.

After reading Janice Hanson's sincerely honest words and self-revealing lessons, I felt in myself a sense of peace. Despite what seems like never-ending challenges, happenings, and sometimes sadness, the message to me as a physician, trained in the scientific approach to problems, is clear: there are ways to know that come from places other than science.

For me the ultimate theme of Because of Love goes far beyond the notions of resilience and the use of poetry: it is best captured by the title of one of the wonderful works of the Oxford scholar and writer, C.S. Lewis: I Was Surprised By Joy.

John C. Carey, MD., M.P.H.

Professor of Pediatrics

University of Utah Division of Medical Genetics

295 South Chipeta Way

Salt Lake City, Utah 84108

[phone] Fax [phone]

INTRODUCTION

Love, marriage, and children: this was my girlhood dream. I met Dennis Hanson of Salt Lake City, Utah, in 1954 at a Valentine's Day dance. Four years later, on Valentine's Day, we pledged our love to each other eternally in the Salt Lake Temple of The Church of Jesus Christ of Latter-day Saints. In doing so, we were creating an eternal union with each other and establishing an eternal claim on the children we longed to bring into our home.

Our prayers were answered two and a half years later, when Tonya was born September 19, I960. She was followed by Jed, Mindy, Chad and Cody.

This simple necklace of names does not tell the reality of our family life. Our oldest and youngest children, Tonya and Cody, were born with a complex and unique set of medical problems resulting from the conjunction of Dennis's and my recessive genes. Only recently, it received a name: the Carey, Fineman, Ziter, Syndrome. According to our geneticist, Dr. John Carey, Tonya and Cody represent the only convincing people in the entire world with the syndrome.

This story weaves three strands together: the complex medical conditions that threatened two of our children's young lives, the way our family pulled together in unconditional love and profound faith to save them, and the way our Heavenly Father poured out wisdom and knowledge, leading us step by step to the limits of medical knowledge and beyond, into seemingly unconventional practices, that gave them their health. Yet we're not a dramatic (and certainly not a melodramatic) family. The moments of terror and bliss caused by the recurrence of life-threatening crises and miraculous rescues stand out against a very ordinary family background of work and play, chores, family reunions, school, activities, and all of the hustle and bustle that five children can generate for two parents.

We aren't a perfect family. Dennis and I were as deeply motivated as it is humanly possible to raise our family properly. But being human, we made many—and I mean many—mistakes along the way. Our children didn't always get along. Dennis and I didn't always get along either. This story acknowledges the very real economic and emotional stresses in a family dealing with challenging chronic illnesses. But I choose to focus on the positive aspects of our family life because this is a story of hope. We have never given up. We hope that the love we have for one another will always compensate for the mistakes we make. It is a great comfort to know that God heals and God forgives.

The questions I've been asked hundreds of times is How did you ever do it? How did you surmount all of these obstacles to raise your family? Being a writer was the farthest thing from my mind. In fact, when I began this project forty five years ago, I would check out a typewriter from the public library for two days at a time. I have been gently but irresistibly prompted by the Spirit to realize that there are lessons from our family's experiences that are important to share. Although few other families have to deal with Carey Fineman Ziter Syndrome, many families have to deal with chronic or serious medical problems. And all families have to deal with various serious problems at one time or another. We happened to have a certain set of problems to deal with, but the lessons we learned are applicable to any family. It is those lessons that I particularly want to share.

As a wife, I learned to rely on my husband's strength, commitment, priesthood blessings, and love, while keeping clearly before us the fact that his priority had to be earning a living, just as my priority was mothering our children. We learned the strength of being equal but different partners.

As a mother, I learned the power of true, unconditional love. I learned to overcome adversity, depression, fear, impatience, selfishness, ridicule, pride, and prejudice.

As a woman, I learned the sacredness of everyday living, everyday chores, everyday routines, and everyday miracles. I learned the joy that lies in simple pleasures, I learned the heart-stretching feeling of gratitude when I realized my partnership with God. Most of all, I learned faith. I learned over and over in deeper and finer ways that God loves us, listens to our prayers, answers them in love and wisdom, and leads us step by step. I express this faith within the framework of my Christian faith and as a member of The Church of Jesus Christ of Latter-day Saints, but I hope that those of other religious traditions will be able to relate to the underlying principles of love, faith, and prayer within their own religions.

This book also shares our lessons in relating pleasantly to people who are physically challenged in some way instead of avoiding them out of awkwardness and fear.

The appendices include Sunshine 'N' Rainbows, a collection of Tonya's poems, that shows her maturity and strength both emotionally and spiritually, despite her physical problems. (See Appendix A.) Appendix B includes recognitions that our family's story has received from the media and others. Appendix C contains a glossary of religious terms cited.

ACKNOWLEDGMENTS

I express my deepest appreciation to the many people who have helped make the quality of our family life possible through their love, concern, and advice in the creation of this book.

Foremost among them is my dear, dear Dennis, whose strength during the hard years held our family together. My children are my treasures, my diamonds, my jewels. Their spouses are very dear to us. As my grandchildren wrap their arms snugly around my neck, I melt, wishing I could give them the world. Not blessed with financial wealth, I leave them my most valuable possessions—my love and my testimony—along with my life experiences. No earthly possession will stand them in such good stead as these spiritual treasures they can make their own.

Beloved parts of our family are our parents, Vern and Vadis Grow, Harmon and Almina Hanson, and our extended family: Vern and Janice Grow, Marlene and Merv James, Sharon Grow, Elon and Ella Hanson, Glen and Beth Hanson, LaRue and Pete Neve, Verona and Ken Fairbanks, Fonda and Jerry Thompson (Jerry, a pharmacist, willingly answered many desperate late-night calls from us), Vaudis and Bernerd Atkinson, lone and Mac McNeill, the McCoy family (Mark, Susan, Crystal, Amy, TJ and Heather), David (Biu) Olive, and the Piiparinen family (Garry, Shelley, Anders, Marie, Lisa, Nils, Jesse).

I gratefully acknowledge the contributions of many health professionals and practitioners in the lives of my family, including, but not limited to: Dr. Randall K. Bennett, Dr. Thomas R. Broadbent, Dr. John C. Carey, for his sincere, kind, and caring concern, and for writing the Foreward, Dr. Matt Clark, nurse's aide LaRue Croft, Dr. Robert Ely, Dr. Richard Haskins, Dr. J. Deon Hutchings, Dr. J. S. Roger Jones, Dr. Dale Johnson, Stan Malstrom (NDMT), Dr. Louis Morales Jr., Dr. E Fuller Royal, Dr. Gill O. Sanders, Dr. Clifford Snyder, Dr. Jack Stringham, Dr. Herbert P. Ungricht, Dr. Dick D. Wetzel, Dr. Robert M. Woolfi, the research team at the National Institutes of

Health (NIH), Dr. Irini Manoli M.D. Ph.D., Carol Van Ryzin, CPNP, and Dr. Carlos R Ferreira Lopez M.D.. A special thanks for my excellent care from Dr. F. Fuller Royal, Dr. Brian Thomas D.C., and Dr. Mary Beth Scholand, Associate Professor of Internal Medicine.

Dear friends and family who have been a strength, especially those who have encouraged me to write this book: Vaunile McNeill, Judy Walker and Goldie. Those who have shared their own talents and gift of self in our families behalf: Joseph Caldiero, Walt DeLand, Ray Kartchner, Ron and Carolyn Johnson, Faye Truman, Goldie, Connie Hayes, Janet Parberry, and Janet Peterson, a dear friend who sacrificed many hours editing this book, several times, in the beginning stages. If it were not for her, this book would never have come about. Janet is the author of Twentieth Century Daughters of Light, Remedies For The I Don't Cook Syndrome, and coauthor of Keepers of the Flame, Elect Ladies, and Children's Friends. When a child has medical difficulties, a parent is always grateful for same-age peers who look beyond the sometimes faltering body to be friends with the person inside. A few of Tonya's genuine friends, but not limited to, are Diann Bowles, Celeste Chong, Tenney Clawson, Peggie Honsvick, Ed Matsu, Barbara Moeller, Kim Moore, Terry Morgan, Kristie Pearson, Lorie Poulson, Kim Shamy, Susan Snedeger, Michael C. Weaver, and Karie Woodforde.

Cody's unconditional friends are so numerous it would be impossible to name them all. A few close buddies are the entire Hyland family, Don, Jackie, Tracy, Kerry, Kristi, Angela, but especially Grant. Also, Nate Gundersen, Darin Featherstone, Brandon Johnson, Linda Lou Nelson, Jerret Parberry, Kit Snarr, Jared Spilker, Jared Staker, Patrick Trenam, Quinn Walker, Tyson Willardsen, and the Johnsons-Nickie, Mandy, and Chris.

Appreciation and heartfelt thanks to Don Norton, Professor of Linguistics and English Language, Brigham Young University, for his excellence in proofreading, suggestions for the polishing touches, and for writing the Preface.

With appreciation, I acknowledge Eric Merritt, Vice President, Zygote Media, for believing in my vision for the book cover design and helping it evolve.

And last, but not least, I acknowledge Neil and Pat Holland for the first printing of Because of Love, thereby giving me the opportunity to declare the worth of the soul and, in my own small way, praise the Lord.

COMMENTS

Life has not been particularly easy for the Hansons, but Janice emphatically says, It has been good. Dr. Herbert Ungricht, the Hansons' ophthalmologist for many years, sums Janice up, 'Janice Hanson is a remarkable woman. I don't think many people would do what she has done. She was determined that her children should lead as normal a life as possible. What these children are is a direct result of the tremendous love and devotion she has for them. At the same time, she has not slighted the rest of her family. I have seen patients with a handicapped child who have dedicated themselves to that child to the exclusion of their other children. I remember her coming to my office with Cody, wheeling him in a stroller along with the suction machine and the electric motor which was necessary to run it. Janice feels it is a privilege to have these children.' And for those who have been inspired by Janice's courage and devotion, it is their privilege to know her.

Janet Peterson

(Salt Lake City, Janet Peterson, A Mountain To Climb.

This People Magazine, April 1987, p. 56-60.)

"As I read your book, Another Hill To Climb , (book title was later changed to Because of Love,) I found myself praying for your family as they went through their struggles. I was very moved by the courage that Tonya and Cody have, they are truly two of the most chosen people of our Heavenly Father, and I haven't even met them except through this book.

This book teaches the worth of a soul. The world should be given the chance to read it so that people can come to a better understanding of why we should not decide the life of a tiny baby.

I read this book in six hours. I just could not put it down! I thought the Lord had given me a lot of problems but mine were very small compared to the tribulations that your family went through.

Janice, I am so thankful that you let me read this book. It made my testimony of the church grow that much more. . . God bless you and your family."

Cherrie K. Roberts

Alphagraphic Copy Center Technician

"The Hanson story is a poignant portrayal of human love and hope. Other parents reading this story will find the courage displayed by this family nothing short of inspirational, as they fought against despair and conquered, as they met the challenge of successfully raising handicapped (physically challenged) children - and won. I was moved.

Janet Parberry

high school teacher, mother of four

It enriched my life. I knew as I read that this was truth, and that the Lord was with you. Several times I felt that burning or reassurance that you do when you hear the truth, and other times I felt it from the top of my head clear down to my toes. When I was brought to tears, I would compliment you on your attitude.

Carene English Erickson

Wife and Mother

I love to read and have read many books throughout the year, but none have taught me more about love than yours. I want to thank you for sharing this personal story and for teaching me more about love than you will ever know. . . my heart has so wanted to tell you how much this meant to me.. . .

Amanda Barrus

college student

PREFACE

Janice Hanson's account of how she and her husband reared two severely physically challenged children is a classic example of human resolution and resourcefulness. One would never think the human body or spirit could rise to meet the challenges that Janice and her husband Dennis faced. Many families accept children with limitations, but rarely children who require the sacrifices that Tonya and Cody, both profoundly limited by the same genetic disorder, posed to their parents. To assure the survival of these two souls, the Hansons became doctor, nurse, therapist (psychological and physical), nutritionist, counselor (personal and vocational), and of course model parents.

A unique lesson of this story is the Hansons' initiative to balance their own knowledge and intuition with the presumed expertise of professionals - doctors, nurses, counselors, and educators. It's risky to question the competence of such experts; it requires alertness, prayer, faith, study, and careful training. The Hansons did their homework. And parents, who know their children better than anyone, often simply do know what's best. And as their children's appointed stewards, they are, after all, primarily accountable for their children's welfare.

This book is a tribute to the capacities of the human spirit, a reassurance to parents who face similar challenges, but also a sobering testimonial to any of us who face different or lesser tests in our mortal journeys.

Professor Don Norton

Department of Linguistics and English Language

Brigham Young University

Provo, Utah

CHAPTER 1

Why Can't I Have Her?

Hi, Mom! It was Tonya's bubbly voice on the line, right after the operator, plunging on before I could say more than, How are you, sweetheart?

"I'm fine, Mom. I cooked the main course for seven of us girls who were all going out — lasagna. They loved it so much, I hardly got a bite. Nick is a really neat guy. We had a blast at the dance. My roommate doesn't have a very happy home life, not one with a real mother's influence.

Could I bring her home with me sometime?

Certainly, your friends are always welcome in our home.

I have another friend by the name of Pam Headly. Pam is going on a mission in September, but she needs to talk to a doctor about her hand. Do you think you could arrange for Doctor Snyder to look at it?

Yes, of course, I said, then added quickly before she could begin again, Tonya, I just love for you to call when you have problems, but this is the sixth long-distance call this week. Your bill was huge last month. Will you try to write?

Who would have thought that our frail daughter, weighing only five pounds fourteen ounces nineteen years ago, could give so much strength to others now?!

When I went to the hospital to have Tonya, I was placed in a room divided by a curtain. I could hear voices from the other side of the curtain. It sounded like a nurse and another expectant mother. One voice sounded familiar. A few moments later, I called out, Karen, is that you?

Janice, what are you doing here? she replied.

I'm having my baby today—if the doctor doesn't decide to send me home.

Karen and I had worked in the same office building for the past two years. Both of us had experienced difficulty conceiving, but how fun it was to be having our babies together this very day. We were wheeled to separate labor rooms while expressing words of encouragement to each other. About an hour later, the nurses peeked their heads into my room and said, Karen's about to deliver. You'd better hurry up, Janice, or you're going to lose. We're having a race! Try as I did, I wasn't the deciding factor in this matter. Already, I knew my child was determined to have its own way. I tried so hard to have my baby.

A short while later Karen came wheeling past my room in a sitting position, mind you, waving her hand and exclaiming, I have a little boy. How excited I was for her!

Dropping my head to the pillow, I began to push harder than ever. The hour hand on the clock above the door moved ever so slowly. Two long tedious hours later, still no baby.

Yikes? I forgot something. Dennis, quick, hand me the telephone.

What's wrong, Janice? he asked worriedly.

I'm in charge of the games tonight for Sylvias baby shower and I need to get hold of Nadine to explain the games and prizes so she can take over for me. I knew I could depend on Nadine. We had been best friends since elementary school. Not home. Wouldn't you know? I had better call my sister, Sharon. She can take everything to Pat's since the shower will be at her house. Thank goodness that's done! Now I can rest with ease (if that's possible when in labor). Now I can concentrate on my baby.

Another three hours slowly and painfully crept passed us.

When will this baby be born Dennis? I am so tired.

Hang in there, Janice. It won't be much longer.

It had been a long, grueling labor. The hard part was that it went on for five hours, then another four. I was exhausted. Dennis looked as if he'd been put through the wringer. He wiped my forehead with a damp cloth and gently rubbed ice cubes over my parched lips.

I wanted this baby with all my heart. We'd been married for two and a half years and had been so disappointed when it took almost two years before I conceived. I was working as a secretary at Pacific Northwest Pipeline Corporation (later El Paso Natural Gas Company), but there was no question in my heart about my true career. There had been many tests, many tears, many doctor appointments. Each day of the pregnancy, Dennis and I thanked God for trusting us with a child and promised to do our best to be good parents. I dreamed the same dream over and over of holding our newborn daughter. She had sandy hair and was wrapped in a bright pink blanket. Just once I dreamed a different dream, a strange one: she was older, sitting up in a bed with a sort of plastic tent over her. I was puzzled by the dream but I didn't dwell on it. We chose the name Tonya Kaye.

The delivery room was a blur. I was so groggy that the next thing I remember was being wheeled to the recovery room. Dennis, walking beside the stretcher, held my hand. A beautiful little girl, he said. Plump. Lots of coal-black hair. She looks just like me. It was September 19,1960.

The next morning, I could hear the babies being brought to their mothers throughout the maternity ward. No one brought a baby to me. Where is my baby? I asked the nurse. Why can't I have her?

Be patient, she gently answered. The doctors will be making their rounds soon.

After waiting two and a half years for our baby, it was hard to be patient for one more minute. Our pediatrician, Dr. Dick D. Wetzel, appeared cheerfully at my bedside. Janice, your baby has a little problem: a partial cleft palate and a receded chin. But it can be taken care of. Everything will be fine.

Hearing his reassuring