A Struggle for Independence: Life with Cerebral Palsy

Copyright © 2015 by Sandra Lowery.

ISBN:          Softcover          978-1-4990-5096-7

                   eBook              978-1-4990-5095-0

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

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.

Rev. date: 12/23/2014

Xlibris

1-888-795-4274

www.Xlibris.com

542407

Table of Contents

Dedication

Introduction

Chapter One

Chapter Two

Chapter Three

Chapter Four

Chapter Five

Chapter Six

Chapter Seven

Chapter Eight

Chapter Nine

Chapter Ten

Chapter Eleven

Epilogue

Dedication

I would like to thank my beloved family and friends for their faith in me and for their encouragement in all the things I wanted to do. It is because of them that I have succeeded and overcome so many obstacles. I could not imagine not being a part of this amazing family. Very special and heartfelt thanks, to my mother and grandmother for telling me the story of my birth. I know how hard that must have been for them, to recall that situation. I praise them for their strength, and for passing that strength on to me.

Introduction

1975

Climbing the seemingly endless stone stairways of Crafton Hills Community College to and from classrooms always reminds me of summiting the streets of San Francisco. With my early morning classes over, I headed down to the cafeteria. Always waiting to feed the hungry and entertain the talkative students, the cafeteria is a student’s family room away from home. Crafton, or ‘Harvard on the Hill’ (as nicknamed by the locals) seemed abundant with ashtrays and newly minted college freshmen energy. I saw a friend and walked over.

Hi Michael I smiled.

He looked up Hey Sandy I almost didn’t see you there!

I usually found him absorbed in an energetic conversation about something with someone, or vice versa if he was writing a paper.

Sitting down I asked him, Did I tell you I’m going to visit Cheryl this summer in Tacoma?

Michael shook his head and looked mildly perplexed.

She was a grade school friend of mine when I lived in Spain. I explained.

I’d like to take the train all the way up north to Washington but my dad would rather see me fly up. He says a train trip would take over a day and that a young woman traveling alone is vulnerable to guys who might take advantage.

Michael nodded thoughtfully.

A new voice answered from the other end of the table

I don’t know about that; you can take care of yourself. I remember the sixth grade when you knocked that kid flying in to the wall.

Trying to hide my surprise, I challenged him.

Who are you?

Bill

Why don’t I remember you?

After I saw what you did to that boy I was as quiet as a mouse. He laughed a little.

A vision of me at twelve years old flashed through my mind. I had done that! After all these years and so many miles! That was an unexpected and funny memory. Was this a mere coincidence or a miracle of synchronicity? At that moment I was too shocked and inwardly elated to allow even the presence of such an abstract distinction linger.

* * * * * *

Chapter One

Sandra

It was around one o’clock in the morning on a late winter Wednesday in Ashdown Arkansas when my mother, Margaret Lowery, went into labor at my father’s family home. Not wanting to disturb anyone too early she ended up waiting until about nine in the morning before telling them she was in labor. My father (Charles) and my grandmother (Ethel) tried to encourage her to go to the hospital (which was about twenty-five miles away in Texarkana) but my mother refused. She wanted me to be born at home. Coming from England, where most babies during this time were born in the family home, mother thought it would be best to have me there, and so they stayed.

It was after thirteen hours of labor when I was born on the seventeenth of March, nineteen fifty-four at three o’clock in the afternoon. I weighed seven pounds eight ounces and I was twenty and one and a half inches long.

But there was a problem. I had emerged with the umbilical cord wrapped around my neck and I was not breathing. Dr. Dobbs, the physician who was called to assist with the delivery, was able to quickly untangle me and gave me a swift spanking to start my lungs, but it didn’t work; so he tried C.P.R. and finally, on his ninth breath, I began to breathe. Gradually normal color appeared and it looked as if I was going to live. Before he left, Dr. Dobbs advised everyone to keep a close eye on me throughout the night and, unknown to my parents, he took my grandmother aside and said quietly, She’s in God’s hands now then departed. My grandmother wondered what had provoked such an ominous statement. His words kept her up all night watching over me.

According to my grandmother; sometime during the night, I started to cry as if I was in deep pain. My grandmother picked me up and said that when she looked at my face, I looked as if I had a really bad headache so she laid me on a heating pad next to her on the sofa in the living room. Around ten o’clock the next morning I had a seizure; my mother and grandmother watched my little hands make fists and I began to shake. Grandmother immediately phoned Dr. Dobbs and told him what had happened.

I was afraid that might happen he replied. What he said next terrified her in to action. She would be better off dying because if she has another seizure she may not ever walk or talk.

My grandmother shouted at him through the phone, I’m not going to let my granddaughter die! I want you to meet us at the hospital in Texarkana right away!

It turned out that he would never show up, although I don’t know why for sure, and the family would, understandably, never see him again.

So I was rushed to the hospital and into the waiting arms of a neurosurgeon that was able to fully examine me. He told my anxious family that I had a blood clot on my brain which probably resulted from the long labor and the fact that I was a larger baby than they had expected. He said that if he didn’t do anything about it, the blood clot would cause a grand mal seizure which could leave me a vegetable or kill me. This, he said, would leave me with a thirty percent chance of being normal. Otherwise, the only other thing he could do was to try and dissolve the blood clot by injecting an anticoagulant directly into my head at the temples. He said if he did this, I may have a seventy percent chance of being normal or very close to it.

This procedure was being developed at this time, and we were fortunate to live near one of the leading head trauma hospitals that also assisted the military with head trauma patients.

My parents were beside themselves with worry so it was up to my grandmother, with my parent’s permission, to sign all the legal forms and interact with my emergency doctors. The procedure did, in fact, dissolve the blood clot and saved my life though I remained in the hospital for a week afterward. This particular procedure may have been an early predecessor to the thrombolytic therapy that is used in acute ischemic stroke and heart attack patients today.

During my stay, the nurses kept me in the Intensive Care Unit and they had to feed me through a tube inserted up my nose that went to my stomach. I had lost my most basic functions because of the seizure and needed constant monitoring, but gradually my motor skills such as sucking and the other natural movements of a newborn returned. I was called, Baby Girl Lowery, as life was incredibly touch and go for the first couple of days. When it appeared I would make it for sure, my parents decided to finally give me a name.

My father had a twelve year old sister in school at the time, and my mother asked her to compile a list of all the names of the girls in her class. She agreed, and a couple of days later they chose two that they felt were the prettiest naming me Sandra Kay Lowery. My parents mentioned to me once that I was almost called Pat (because of my birthday being on St. Patrick’s Day) but my dad had a cousin with the same name and they didn’t want to seem as though they were playing favorites among the family.

After a week, much to their relief, my parents were able to take me home, although they were under strict orders to keep careful watch over me and not to let me cry for more than a few minutes without picking me up, this was to prevent another seizure, and to bring me back to the hospital in six weeks for a checkup. The doctor also gave my parents a prescription for a low dosage of Phenobarbital, also to prevent further seizures.

Miracle Baby

Six weeks later the doctor exclaimed This doesn’t look like the same baby I saw six weeks ago!

He held me up high in his hands, This baby is a miracle baby! She looks like a normal infant.

He checked me over, noticing that on one side I would tense up a little when I was excited, though I responded to all of the noise tests like a ‘normal’ baby. My parents were told that there may be a possibility of some minimal brain damage but no one would know until I began crawling. Along with the low dose prescription of Phenobarbital to prevent future seizures, he also instructed my parents to do a crawling movement with me 4 times a day to help prevent learning disabilities. We continued this daily until I learned to crawl myself.

Things began to take normal shape for my parent’s young family, and by the time I was five months old, under the doctor’s supervision, they weaned me off the medication since the seizures never returned. It had become apparent that the seizure after my birth had been caused by the blood clot and I was not epileptic.

Chapter Two

IQ Tests and Shenanigans

I was a very happy baby. In my early months I would squeal with delight whenever people talked to me. Childhood illness took its course, and when I was six months old I came down with pneumonia and was put in the hospital again. It was touch and go once again for us, but I came through it, and like many other babies at this age, upon returning home, I was put in a walker by my mother.

When I was eight months old my mother took me to an Air Force doctor for a well baby check up. He examined me over and tried to give me an I.Q. test. My mother said I wasn’t feeling very well that day and was uncooperative with the test.

The doctor said to my mother, There is definitely something wrong with this baby as I can’t get a proper reading from her.

My mother went home upset, and the next day I was at the hospital because I was indeed sick.

At nine months old, my mother took me to another Air Force physician who gave me an I.Q. test that showed my I.Q. was well above normal. She was instructed to encourage our family to treat me like any other normal child because there was …nothing wrong with my mind. My development was fine; I had my first two teeth by then, I could sit up if someone sat me up, and I could hold my own bottle. Although I still couldn’t crawl, it was still too early to tell if the seizure at birth had any effect on me.

By the time I was ten months old my mother could stand me up and have me hold onto something like a chair or a coffee table. She would take a quick picture of me before I let go and fell over as I could not stand on my own.

By the time I was a year old, my mother had successfully potty trained me. One day, about this same time, my mother had put me in my walker. She later noticed that I wasn’t where I should be and it sounded very quiet in the house. She went to look for me and she found me in their bedroom with the underwear drawer open. My mother said when she walked in, I looked up at her smiling with a bra draped across my head and a pair of panties on both arms. My mother didn’t know whether to laugh or scold me. She was surprised that I had the strength to open the drawer.

When I was a little over a year, my mother took me to Lackland Air Force Base Clinic in San Antonio, Texas, for a checkup. That day, the doctor had some medical students with him to observe. He sat me on the exam table and started talking to the students about my condition. It was agreed by this time that I had mild cerebral palsy. His demonstrative examination began, and at some point during the checkup, my mother said that I watched as he hit my knees with the reflex hammer. Then, when he laid it down beside me, continuing with the discussion of my condition, I looked at him and then looked down at the hammer. He had bent down to pick up my foot and as he was doing this, my mother said I picked up the hammer and bopped him on the head with it! Everyone laughed, and the Doctor looked up at me, and I gave him back the reflex hammer.

Well, we know her mind is o.k. He chuckled. My mother sunk down in her chair, embarrassed. She later told my father and he also laughed.

Leg Braces

Sometime between a year and eighteen months, I started to pull myself up to standing while holding on to stuff. I would occasionally let go and take a step but would fall over. When I stood up I would stand on my tiptoes. I could not put my heels down. This is why I couldn’t walk without falling over. I could scoot around on my bottom fairly well, and roll. I liked standing up and letting go, but would get upset when I fell over.

My mother took me in for another check up when I was about eighteen months old.

She told the doctor, Well, Sandra can scoot around the floor and pull up on furniture, but when she stands, she stands on her tip toes. When she takes a step, she falls over which upsets her. The doctor then said, Well, her legs look pretty strong, maybe we should try putting braces on her. I think straight legged braces will work best because we need to strengthen the muscles behind her knees. He put a spring on the heel area to help the heels to come down. In the first week of wearing braces it took two people to hold me down to put the braces on me. I didn’t understand why my mother and her friend were holding me down and putting these heavy metal devices on my legs. I stood next to the wall for the first few days and cried as my mother persuaded me to walk, but I refused. By the second week I could walk to items of furniture, and my mother was relieved because she had thought of giving up on the braces. In the third week, I was walking across the living room.

When my mother took me in for my next checkup, the doctor asked how I was doing with the braces.

My mother said, Well she’s taking steps on her own. She can walk across a room. Mother put me down and told me to walk for the doctor. I walked. The doctor told my mom that now they didn’t need to make little crutches for me. They gave me a walker for far distances. I only used the walker when I played outside. Six months later, I began walking on my own with the braces. I wore straight-legged braces which meant they didn’t bend at the knee, so if I fell I couldn’t get up on my own.

Transitional Twos and Dog V. Skunk

I really enjoyed music around the age of two. On Saturday mornings, there was a TV show that had music and dancing. I would make my father pick me up and dance with me for the entire show. It got to be my tradition that every Saturday morning we would dance, although my parents grew a little tired of this routine. Sometimes on Saturday, right before the music show came on, my parents would run to turn off the television. Otherwise, I would hold up my hands and say to my parents, Dance, dance!

My Grandparents came to visit around this same age, and along with them, they brought a six-month old cocker spaniel named Lady. They told my parents that I needed a dog. My mother didn’t really want the dog, but she kept her for me. Lady and I were great companions and we would play together all the time. One evening my parents heard