Rolling Forth with Faith: In Spite of Spina Bifida

By Michael A Price

When Cindy Price and her husband, Michael, were pregnant with their sixth child, early tests indicated the unborn baby boy had a crippling birth defect, spina bifida. The medical profession recommended abortion, but the Price family, through prayer, chose birth and life.

In Rolling Forth with Faith, Michael Price shares the family's account of successfully raising their special needs child, Evan Neil, into adulthood. It narrates a tale of deep despair and ultimate triumphs, a testimony of uplifting guidance from the Lord, and a celebration of their son's accomplishments and good humor. Price narrates how he and Cindy relied on their friends in the church, their community, and their family to navigate the challenges.

The story of one family's journey of faith, Rolling Forth with Faith tells of Evan's growth, his strength, his humor, and the new normal it brought to his family. It shows how he continues to be a quiet example to all who know, admire, and love him.

• Language: English
• Publisher: Archway Publishing
• Release date: Feb 25, 2019
• ISBN: 9781480874930

Michael A Price

Michael A. Price is a retired nuclear power plant operator. He is a husband, a father of six children, and grandpa to thirteen grandchildren. He is a freelance writer, mainly writing humorous short stories. Price is active in the Church of Jesus Christ of Latter-day Saints and is a community volunteer.

Book preview

Copyright © 2019 Michael A. Price.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

Archway Publishing

1663 Liberty Drive

Bloomington, IN 47403

www.archwaypublishing.com

1 [phone]

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Bible Scripture taken from the King James Version of the Bible.

ISBN: 978-1-4808-7494-7 (sc)

ISBN: 978-1-4808-7493-0 (e)

Library of Congress Control Number: 2019901628

Archway Publishing rev. date: 2/18/2019

Acknowledgments

I would like to thank my beautiful wife for supporting me through the many hours I have spent on this memoir. She has never failed to support me in my writing endeavors. My children could not ask for a better mother, and I could not ask for a better wife.

My five oldest children, for their love and support of their younger brother, Evan Neil Price, deserve recognition. Their husbands and wives have also accepted him into their lives.

I would also like to express my appreciation to Dr. Rene Bravo, a brilliant and dedicated pediatrician. Without his optimism and guidance, this story would not have been possible.

My critique group, especially Thomas Snow, Mark Ruszczycky, and Eva Garcia, earned my gratitude with their honest feedback and constant encouragement.

I thank my Heavenly Father and Savior Jesus Christ for allowing me to be an earthly father to this remarkable young man and for the assurance of a better life in the celestial kingdom.

All biblical quotations are from the King James Version of the Bible. The Book of Mormon and Doctrine and Covenants are copyrighted by Intellectual Reserve, Inc. The quotations are used by permission.

A sermon delivered by Elder James Faust is also copyrighted by Intellectual Reserve, Inc, Used by permission.

Contents

A Vision in the Night

The Decision

Reflections

Pressing Forward

Elder Faust

Please help me.

A Name and a Blessing

Friends in the Community

Laughter, the Best Medicine

An Agonizing Choice

A Collision with Reality

A Dire Hazard

Wheels

The Tumble

Playtime

Call 911!

Sports

A Terrible Twist

More Birth Defects

Make-A-Wish

The Ordeal

The Road to Kidney Failure

Service in the Priesthood

Life Happens

The Tourist

A Sword of Damocles

The Eagle

Fun and Games

Why?

The Scholar

The Fan

The Stranger

Sing to the Lord

Surf’s Up!

Uncle Evan

A Vision in the Night

Weeping may endure for a night, but joy cometh in the morning.

—PSALM 3:4–5

I was dreaming an extraordinary dream. Yes, I know dreams tend to be bizarre, but this was stranger than most. As I slept, I watched Evan struggle to perform the simple act of hitting a ball with a tennis racket. He also tried to stand but failed miserably. At this point, the dream became musical, with Evan singing a song about how he wasn’t going to give up. He sang, I’ll pay the price.

That phrase struck me with an overpowering force. I thought of Evan enduring a crippling birth defect and a lifetime of trials and tribulations. Indeed, he was paying a steep price for being born. And we had forced this terrible life on him. The thought dragged my soul into a deep sense of despair.

Click. Bright lights over my head awakened me. Evan sat at my bedroom door with his hand on the light switch, laughing loudly, totally oblivious to my woe. From his point of view, I had once again fallen victim to his favorite prank. I don’t know why, but he thought it was hilarious to wake me up that way. Just as surely as the lights displaced the darkness, his joviality displaced my sadness.

As I pondered the meaning of life that morning and at other times, I came to strongly believe in the scriptural promises of joy. Just as light is stronger than darkness, joy is stronger than sorrow.

This moment symbolized Evan’s entire life. While we sometimes grieved over his disabilities and sufferings, he always faced his challenges with courage and cheerfulness.

This is his story, as told by me, Evan’s father.

The Decision

Trust in the Lord with all thine heart, and lean not unto thine own understanding.

In all thy ways acknowledge him, and he shall direct thy paths.

—PROVERBS 3:5–6

I n the spring of 1987, I had no major problems in my life and plenty of things to be happy about. I had a beautiful wife, Cindy, and five great kids. Cindy was pregnant with our sixth child, as yet unnamed. Work at Diablo Canyon Nuclear Power Plant was challenging but paid well. I enjoyed my activity in the Church of Jesus Christ of Latter-day Saints. I liked living in the small town of Grover Beach, three hours northwest of Los Angeles.

Our nightmare started the day after Easter, when we received a phone call from Cindy’s obstetrician. He asked us to come to his office to discuss the results of a routine screening.

We did an alpha fetal protein test on Cindy’s blood, he explained. "We use this test to screen for possible birth defects. The results show an elevated level. This test has a history of 5 percent false positives. That is, in five out of one hundred tests, a problem is indicated, but nothing is really wrong.

However, this can be a sign that the baby has spina bifida. This birth defect occurs in about one out of one thousand births. A specialist can detect the presence of spina bifida with a sonogram. I can’t do that with my equipment. I highly recommend you see a genetics specialist in Pasadena.

Since I had never heard of this condition, the doctor provided us a pamphlet. I learned that spina bifida is a Latin term meaning open spine. In the early phases of fetal development, the spinal cord is usually covered by a neural tube. If all goes right, the neural tube develops into the vertebrae and membranes that protect the spinal cord. If the neural tube fails to close, an opening is left on the spine. Nerves that should grow in place are left dangling within a sac that forms on the baby’s back. In essence, the child is born with a crippling back injury. The impact varies with the location of the defect. All nerves above the spina bifida defect are unaffected. If the defect is at the brain stem, the baby will either be stillborn or die soon after birth. If it is at the base of the spine, the child may eventually walk but have problems with bladder and bowel control.

For unknown reasons, hydrocephalus usually occurs. Hydrocephalus is a Latin word meaning water on the brain. Fluid builds up inside the brain, increasing pressure. Brain damage can occur. If left untreated, a baby born with this condition will die a painful death within a few weeks.

I was alarmed to hear that our baby could have this problem. However, I did the math; the odds were fifty to one that the test results would be a false positive. I decided to stay optimistic. We planned to go to Pasadena, hear good news, and then drive twenty-five additional miles to visit my parents in the city of Walnut. With my mother-in-law staying with our children, my wife and I could enjoy a night away.

On a Friday morning, Cindy lay on an examination table for the sonogram. To her right, a doctor sat in front of a high-tech sonogram machine, which resembled a computer, including a keyboard and monitor. The images on the monitor were meaningless to me, but I watched carefully.

As the doctor studied the image, he said, The ventricles [of the brain] are enlarged. He then became very quiet. When I commented to the nurse that I didn’t understand what I saw, the doctor said, Oh, sorry. I’m looking at the head. Neither Cindy nor I could see his face, but we did not like his demeanor. Without saying a word, he took several snapshots of the screen display. He superimposed a ruler over an image on the screen and took more pictures. His manner silently screamed, Something is terribly wrong with your baby!

Fear burned away my false optimism, and Cindy stared wide-eyed in horror.

He finally faced us and said, I do not like what I see. There are indications of an opening low in the spine. Hydrocephalus, or water on the brain, is also present. I recommend that we do an amniocentesis to confirm my diagnosis.

Too shocked to say anything, we just nodded.

He inserted a long needle into Cindy’s womb and obtained a small sample of amniotic fluid.

Stunned and depressed, we retreated to our home, a long three-and-a-half-hour drive away.

What were we going to tell