Brooke's Journey of Heart: A Mother & Daughter Story of Spina Bifida, Home, and Family

By Beverly Charles and Brooke Klemme

Brookes Journey of Heart is the story of a daughter who lives each day with the disabilities delivered with her at birth and the mother who gave birth to her. Beverly Charles asked her daughter, Brooke Klemme, if she would like to write her story of living with Spina Bifida. Brooke responded, "Yes! There are two sides to every story." Brooke and Beverly show us both sides of their story in the context of faith, family, and friends. In 1971, more than 6000 American children were born with Spina Bifida, but like most people, Beverly Charles knew nothing about this condition until she gave birth to her third and last child. In this touching memoir co-authored by Charles and her daughter Brooke Klemme, we learn first-hand not only what it means, but what it feels like - to raise a disabled child, to watch her suffer and triumph, and to be that child, who now as an adult, tells her side of the story. Most parents will never have to answer this question - should your new baby live? For Brooke's mother, there was only one answer, an answer that would involve multiple surgical procedures, interminable hospital stays, and an army of doctors and therapists - an answer that would change her and her family forever. This book is a spiritual memoir and a medical one. The authors make connections with Eastern and Western religious practices that have seen them through difficult and joyous times for over four decades. Their story transcends the personal to offer hope and help to other parents who have faced the same hard question and who, like Beverly and Brooke, answer "YES." As one reader said, I loved it. I laughed, cried, got mad, got sad, and now feel like a part of your family.

• Language: English
• Publisher: AuthorHouse
• Release date: Aug 16, 2012
• ISBN: 9781477232248

Beverly Charles

Beverly Charles & Brooke Klemme Beverly Charles lives in rural Texas with her husband, Larry. They each enjoy the big Texas sky, the fauna and the flora, visiting with family and friends, reading lots of books, watching movies, cooking, traveling, and exploring the artist life by learning more about writing and painting. She writes and takes photographs, and he paints using watercolors. She coaches a few clients, some in writing and some in leadership, and offers memoir writing workshops. This is Beverly's second book. Her first book was a memoir, How I Discovered My Mother Was A Goddess - A Daughter's Story. Brooke Klemme lives in the Denver metro area with her husband, Phil. They both work for the Federal Government. Each year they invite family and friends to share in the tradition of walking in the Denver Spina Bifida's annual Walk 'n Roll event on Mother's Day. Together they enjoy attending concerts by their favorite artists, going to Rockies, Bronco, and Avalanche games, travel, family, friends, and home projects. This is Brooke's first book.

Book preview

Brooke’s

Journey of Heart

A Mother & Daughter Story of

Spina Bifida, Home, and Family

Beverly Charles & Brooke Klemme

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AuthorHouse™

1663 Liberty Drive

Bloomington, IN 47403

www.authorhouse.com

Phone: [phone]

© 2012 by Beverly Charles & Brooke Klemme. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 07/31/2012

ISBN: 978-1-4772-3226-2 (sc)

ISBN: 978-1-4772-3225-5 (hc)

ISBN: 978-1-4772-3224-8 (e)

Library of Congress Control Number: 2012911735

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

Certain stock imagery © Thinkstock.

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.

Contents

Authors’ Note

Introduction: : Spina Bifida

The Diagnosis

Chapter One Saying Yes To Life In This Family

Chakra One—Base Of The Spine—Groundedness/Earth

Connection—Stability

Chapter Two Daddy Left

Chakra Two—Lower Abdomen/Navel—Feminine Energy—

Connection To Water—Creative Life Force

Chapter Three We Get By With A Little Help From Our Friends—And Family

Third Chakra—Solar Plexus—Trust And Honor Oneself,

Willpower, Self-Development, Courage, Generosity

Chapter Four All You Need Is Love

Fourth Chakra—Center Of Chest—The Heart Chakra—

Love, Compassion, Openness

Chapter Five A Voice Of One’s Own

Fifth Chakra—The Neck And Throat—The Throat

Chakra—Communication/ Personal Expression/Surrender

To Divine Will/Truthfulness

Chapter Six Did I Imagine This?

Sixth Chakra—Center Of Forehead—Third Eye—

Intuition/Imagination/Wisdom

Chapter Seven Waking Up Is Hard To Do

Seventh Chakra—Crown Chakra—Top Of Head—

Its Energy Transcends Human Boundaries—Spirituality/

Self—Realization/Enlightenment

Chapter Eight Making Meaning Of This Life

Chakra Eight*—Archetypal Dimension—Transpersonal

Point/Symbolic Sight/Integrate The Self*

Epilogue We Reach A Milestone: Brooke Is Forty

Appreciations

Books That Guided Us On Our Journey

Appendix

About The Authors

For Phil, Larry, Jeff, Whitney, and Bubba/Dad who are always there and for Paul/P-Daddy who helped make difficult decisions at the beginning

Brooke%27s%20Book%20Photos%20001.jpg

For individuals who live with disabilities—

may we own our place in the world.

For all families with loved ones

experiencing any form of disability—

may we learn together how to navigate the world.

"In the steel room where one becomes

two we were delivered . . ."

—from Birth by George Ella Lyon, poet

Authors’ Note

My assumption is that the story of any one of us is in some measure the story of us all.

—Frederick Buechner, Author, Theologian

Memoir is a form of creative non-fiction and represents a story from a life. Though we have been mother and daughter for forty years, we discovered and learned a lot from, and about, one another as we wrote together. We also want to acknowledge that Jeff and Whitney (Brooke’s older brother and sister), who have shared this journey with us from the beginning, both have a story to tell. In each of their stories, they are the main character.

The stories that join to make this book, Brooke’s Journey of Heart—A Mother & Daughter Story of Spina Bifida, Home, and Family, are influenced by our life experience. We have helped each other remember. In remembering, we are reminded that we exist, abide, remain. We have recreated all conversations and events as accurately as we could. Someone else might tell the story differently, but this is how we experienced it. It’s our story.

It is interesting to see what each person recalls about a particular incident or experience. We may share an event, but we sometimes remember it differently. Or maybe it isn’t that we remember it differently but that we focus on dissimilar aspects of it. We both learned that it’s hard to tell an individual’s story unless you put it in context. And, our context is our faith, family and friends.

We have changed some, but not all, of the names in the story. We are grateful to all who lived this story with us.

"We planted flowers last year, and I didn’t know if I’d be alive to see them come up."

—Neal McHugh, person with AIDS

Introduction

How you made me is amazing and wonderful.

from The Bible, Psalm 129:14

Introduction

Brooke

Spina Bifida is a BIG word for a child to learn. I was taught that word at an early age by my parents because that is the birth defect I have. I will be dealing with it forever.

I know nothing different than leg braces, crutches, and a wheelchair. My life with Spina Bifida has been a pretty normal one with the help and love of family, friends, and acquaintances.

I have had some bumps along the road that have strengthened and weakened me, and I have had a lot of great things happen too. My mother and I are writing this story together. There are always two sides to a story.

Beverly

When my daughter, Brooke, was born in 1971, she introduced me to a world I had never heard of—the world of Spina Bifida with Myelomeningocele. She was delivered with an opening at the end of her spine. Surgery to close the opening could offer a chance of survival, but it also carried a seventy percent risk of causing the development of hydrocephalus in Brooke.

She was three hours old when she had the spinal surgery. She did develop hydrocephalus, and we literally watched as her head grew and was measured each day. The neurosurgeon waited for just the right time to operate and install a shunt to relieve the pressure on her brain.

I was twenty-six years old and had two other children, Whitney, eleven months, and Jeff, four years. My husband, Paul, and I were both teaching school and actively involved in our church. Someone told us that statistics at the time said 98% of marriages that involved a sick or disabled child ended in divorce. We would become part of that statistic, but Brooke would survive, even thrive.

Brooke’s courage and determination, coupled with the love and support of family and friends, continue to sustain her in her commitment to live a fully engaged life in a world that still isn’t sure how to be with disabilities, illnesses, and differences.

Our story is a collaboration—told from two points of view—the daughter born with a birth defect and the mother who raised her.

The body is a central focus of this story, so we have looked to the chakras, a body map, to assist us in unraveling what it means to live with a physical disability (Brooke) and to give birth to and parent a child with a physical disability (Beverly). The wisdom of the chakras comes from yoga—the ancient, at least five thousand years old, program and meditation practice focused on the mastery of one’s body and mind. Yoga’s intent is freedom from suffering and, ultimately, union with one’s divine self.

Yoga passed on the teachings about chakras, but the first reference to them is found in the age-old religious texts of India, the Vedas. Chakras are simply energy centers in the human body. Seven chakras is the principal number most acknowledged. We have added the eighth chakra as a center for Symbolic Sight, acknowledging Carolyn Myss’ work in Sacred Contracts. A learning process is initiated at each of the chakras. The story’s not over, there is more to learn.

The chakras are about saying yes to the incarnation. In the first chakra, we say yes to life. In the second, we say yes to our sexuality and sensuality, and begin to feel at home in our bodies. In the third, we say yes to our self and find inner strength to accomplish our goals. In the fourth, we say yes to love and grow compassion. In the fifth, we say yes to creative potential and enhance our communications. In the sixth, we commune with our higher power and engage in using our intuition. In the seventh, we approach the Divine and know the origin of all being. In the eighth, we develop an archetypal approach to our personal life that enables us to be creative in living our everyday life.

It helps you see your life as a spiritual journey disguised as a physical experience.

—Carolyn Myss, Sacred Contracts

Chapter One

SAYING YES TO LIFE IN THIS FAMILY

CHAKRA ONE—BASE OF THE SPINE—

GROUNDEDNESS/EARTH CONNECTION—STABILITY

SACRAMENT—BAPTISM

"The family is the association established by

nature for the supply of man’s everyday wants

[and needs]."

—Aristotle

Brooke%27s%20Book%20Photos%20002.jpg

Saying Yes To Life In This Family

Brooke—Mom, how did you and P-Daddy meet?

Beverly—Is that a where did I come from question?

Brooke—I guess. Could you tell me that story?

* * *

It was May, 1963. John Kennedy was President. The sex, drugs, and rock-and-roll sixties were lurking in the wings, not here yet. Assassinations and Viet Nam were part of our destiny, but we didn’t know it. In South Central Texas where we lived, it looked and sounded like the fifties—girls in knee-length dresses, guys in pants and buttoned-down-the-front shirts, yes ma’am, no ma’am, yes sir, no sir, thank you, you’re welcome. Elvis, Bobby Darin, Paul Anka, and Frankie Avalon reigned on the radio. The Ed Sullivan Show, The Andy Griffith Show, and Bewitched were prime time television shows. I was reading The Group by Mary McCarthy, and Joy In the Morning by Betty Smith for myself and Mark Twain and William Faulkner for class.

Paul, literally, chased me down the main street of San Marcos, past the LBJ House, past Manske’s Café where the scent of cinnamon wafted from the open door, finally stopping me in front of Colgin’s Jewelry where, panting from his run, he grabbed my wrist and pulled me out of the pedestrian pathway.

Didn’t you hear me call your name? I’ve been calling, ‘Beverly, Beverly, stop!’ for the last block and a half. I didn’t know how to get in touch with you, so here I am chasing you down the streets of town. He took a deep breath, There’s a formal banquet at Aquarena Springs Hotel on May 4th. Would you like to go with me? he asked.

It didn’t take me long to say, Yes.

Paul Orchard was a scholarship student from a little town in the heart of Texas, an officer in his fraternity, a nominee for all-college favorite, an accomplished pianist, and a brilliant math and music double major. I was majoring in elementary education, participating in the drama department’s readers’ theatre, where I dreamed of acting, directing, and writing, and had just broken up (because of pressure from my daddy) with a University of Texas guy who brought me an Ernest Hemingway novel to read every time we had a date.

Paul and I were both active in the Baptist Student Union on our small state college campus. He played the piano and I taught a children’s Sunday School Class at the First Baptist Church we both attended. He was a junior and I was a freshman.

My yes to that date was the beginning of a whirlwind of activity.

"Do you want to go to the San Antonio Symphony’s performance of Faust? Norman Treigle, the bass baritone, is performing as Mephistopheles."

I said yes.

Paul had no car. He walked under a canopy of leaves on the tree lined streets from campus to pick me up at my small apartment, connected to my parents’ home. We moved at a fast pace from there to the Greyhound Bus Station, he in his tux, and I in my cocktail length formal and heels.

On the bus to San Antonio, I confessed, I’ve never been to an opera.

"Faust is one of my favorites. Wagner is brilliant. It’s one of the reasons I’m studying German," he replied, before telling me the story and exclaiming over Treigle’s reputation. I could tell Paul was intrigued by Treigle’s rise from a poverty-ridden New Orleans childhood to become a nationally acclaimed opera singer.

As we entered the symphony hall, I took a breath. Everything looked golden in the light from the crystal chandeliers suspended above us. Graying men in their tuxedos and aging women in their floor-length gowns, glasses in hand, mingled in small groups scattered around the marble-floored lobby. I looked for someone my age.

Paul returned with club sodas for each of us. I took a sip of the cold, bubbly water and said, Thanks.

What do you think? he asked, looking around the room.

It’s beautiful. This lobby is gorgeous.

Just like you, he replied.

Blushing, I thought of the aqua satin cocktail-length formal I was wearing. The one my mother had finished making just the night before. I’d taken a bit of the fabric to the shoemaker’s shop and had pumps dyed to match. Even the small evening bag I held in my hand was made of the same fabric.

We repeated the trip to San Antonio for the opera Susannah.

Another time, I sat in the audience and Paul sang in the chorus of an opera, the name of which I do not recall. But I do recall Paul’s voice, his resonant, bass voice that evoked an image of a deep well from which a booming sound came forth.

After a double-date to see The Great Escape with our friends Kay and Martin, we four decided to head to Tony’s, a hang-out on the edge of town with five or six tables, a juke box, and delicious tacos and enchiladas.

What did you think of the movie? Martin asked.

I’m not fond of war movies, I answered.

Me, either, Kay said.

World War II wasn’t accurately portrayed, Paul began and then proceeded to give us a contextual account of dates and battles and…

Martin interrupted, How do you know that?

I read it, Paul responded.

You remember everything you read? History’s so dull, I forget it as soon as I’ve read it. I need to have you take my finals for me, Martin laughed.

By this time I already knew Paul had started sweeping floors in his hometown Perry Brothers Store when he was thirteen, so he could save his earnings and buy a set of Encyclopedia Britannica, which he proceeded to read every word of. I was already awed by his photographic memory and genius.

Discovering in college, that, I, too, was smart was icing on the cake. Maybe not a genius, but smart enough to gain the notice of professors in the English, History, and Drama departments who let me know—accept this paid position as my grader, change your major to drama, what about pursuing a graduate degree? I was taking sixteen to eighteen hours a semester and working twenty plus hours a week. Knowing how to set a goal and focus on its accomplishment was reward.

I attended a Bible study group Paul led and listened intently while he lectured on propitiation, the atoning sacrifice and death of Jesus which brought divine justice and the reconciliation between God and man.

I sat in the audience, enthralled, while he gave piano recitals, playing Prokofiev, Chopin, Schumann, and Rachmaninoff.

Later, we became a couple, eschewing the words going steady as too pedestrian to describe our relationship. Yet, we did all the things that steadies did—homecoming events, complete with beribboned mum for the afternoon football game, followed by a rose corsage for the evening banquet, theater productions, movie dates, and study dates in the library. His fraternity nominated me for all-college beauty. I was his date for numerous campus events. We were a couple, Paul and Beverly.

In less than a year, he broke up with me.

It came as more than a shock when one late November evening, sitting in the swing on my parents’ evergreen secluded front porch, he said, I’m not ready to commit to one person right now. Someday I might see myself growing old with you, settling down to a life with you and some kids, but not yet.

Thoughts roared in my mind. I wasn’t even thinking of marriage and kids. I still had a college degree to finish. How had we moved into this discussion? Why was he sounding so trapped? I loved him. I loved us being a dating couple. Why was he bringing up a future which seemed down the road, not now?

I don’t remember what I said, but I know I didn’t tell him those thoughts roaring in my mind. That was a habit of mine with Paul—not saying aloud what I was thinking.

I started saying yes to the other guys that were asking me out. Morgan, given his mother’s maiden name, brought me a flower each time we had a date and told me the story of how he’d plucked it from someone’s garden. He laughed at my mother’s jokes, charming her instead of me. He took me to movies at the theater on the drag in Austin. He talked disparagingly of Paul, whom he knew from church. Nathan, who disappeared during deer season to hunt with his dad and uncles, was hoping to be a minister. He liked to tell the meaning of his name, gift, emphasizing how grateful his parents were to finally have the son they’d longed for after having had four daughters. I said no to dates and yes to conversations with James, the red-haired fraternity boy, who made me laugh and challenged my readily-offered opinions, who borrowed my notes from our shared government class, who reeked of cigarette smoke and beer, and who looked like a cross between James Dean and Dennis the Menace.

But I missed Paul. I missed singing Getting to Know You from The King and I or Oh, What a Beautiful Morning from Oklahoma or America from West Side Story with him. I missed reading Rilke out loud to each other. I missed our serious philosophical discussions about Tillich and Bonhoeffer and our musings about what was happening in the world around us—civil rights and a brewing war. Before we’d broken up he’d acquired an old gold and white Ford station wagon that he’d managed, with an instruction book and his newly-acquired mechanic abilities, to keep running. I missed our steaming up the windows with our desire for one another. I missed him.

My roommate, Jeannie, and a classmate, Sarah, warned me as we enjoyed hot, sweet cinnamon rolls at Manske’s, not to be so willing when he came back, asking my forgiveness, and saying, I don’t like seeing you dating other guys. Let’s start over.

I didn’t listen to my friends. In fact, I wasn’t so sure he even wanted my forgiveness.

Within six months he’d broken up with me again, only to come back asking, Can you forgive me? This