Chapter 1 (draft): Raising A Healthy Disabled Chilod

Guest Commentaries, Writings and Memorials: CHRISTAL HOPKINS

Draft: Chapter 1 (draft) of my book:

Raising a Healthy Disabled Child

By Christal Hopkins

If you were born black and female, some would say that you were born behind the eight ball. However, as my brother pointed out to me one day, I was born with three strikes against me. I was born black, female and disabled.

Now, given the fact that my brother has no sense of humor, I took the statement for what it was worth… nothing. Then I sat and thought about what he said, and realized that I was not born with three strikes against me, but I was born with three hurdles to jump over.

My journey toward the prize of independence started the day that I was born. My mother, Sarah, said that while she was carrying me I was over active, constantly moving. The day my mother went into labor, my father was out of town. My mother had a family friend take her to the hospital. By the time she arrived, she knew something was wrong.

My grandmother caught up with my father, Leon, who was on his way home from a funeral in Los Angeles. Daddy had stopped off at a cousin’s house to rest before they continued on to the small town of Fresno, where my parents had settled fifteen years earlier.

My dad arrived at the hospital a few hours before I was born. Mom told me that my birth came so fast that she barely knew it was happening. The only thing that she did know was that her baby was in trouble. She was right; the umbilical cord was wrapped around my neck, cutting off oxygen to my brain.

The problems during my birth resulted in my having cerebral palsy. I almost died during the first few hours of my life. Once the crisis had passed and I was stable, the question of what to do next seemed to be in order. Doctors in 1956 had very limited knowledge of what to expect when dealing with someone who was going to be developmentally delayed. The prevailing thought back in the 50s was that if you had a handicapped child that it was a an virtual death sentence.

I am sure the diagnosis of cerebral palsy was something that neither one of my parents wanted to hear. I can imagine the doctors told them that an institution would be the most humane thing for all concerned. I can not imagine the heartbreak and the grief that they went through those first few days. There was much to pray about, and knowing my mom and dad, prayer was the focal point of their decision-making.

It took no time at all for them to decide that an institution was not what they wanted for their daughter. I’m sure they were afraid. They had no idea what to expect. They did not know if I would have mental problems. They knew that I would have physical problems, but to what degree – no one knew. My parents would have to wait until I started growing and developing before they would know the extent of my disability.

A few days before leaving the hospital, my mom was having her little pity party over what had happening, asking all of the normal questions like “Why us?” My father answered her question with his own, only his question was “Why not us?” His feelings on the matter were very clear; this was not beyond their capacity to deal with. They were no better then anyone else who had been given a problem such as this, and no matter what, they would be able to deal with it as a family.

The day my mom left the hospital was one of the hardest days of her life because she came home without her brand new baby girl. Mom and Dad had prepared to bring home a healthy, happy baby, but that was not to be, at least not yet. I spent the first month of my life in the hospital, because of my inability to suck a bottle; I had to get my food through a feeding tube.

My parents had no experience with a disabled baby, so they spent many hours at the Valley Children’s Hospital learning how to care for me. My mom spent the bulk of the time at the hospital learning and bonding with her newborn baby girl, so by the time I was able to come home, my mom had more or less figured out that mentally, I was just fine.

As the years went, it would become more evident that I was mentally intact. I observed, and could remember events and people that most members of my family often missed. My memory has always been sharp, and, for the most part, quite accurate

They were typical parents with a newborn in the house, and three other young children running around – overprotective. My mother explained to my siblings that they could play with me or talk to me as they would anyone else. But still she was very protective. My sister tells the story about the first time she actually held me. My cousin Chris was visiting and was about to leave. Without knowing that mom had not allowed my brothers or my sister to hold me, she handed me to my sister as she walked out the door. I think it shocked my sister to suddenly have a little baby in her arms. However, I think my mom was even more shocked when she walked in and found me in my sister’s arms. I think it was at that moment that my parents started to relax, realizing that I was a lot tougher then they though, and that I was not going to break on contact.

My parents never labeled me as disabled, but they never tried to deny to themselves that I had cerebral palsy. They called it what it was. I would need help in doing some things, but that never prevented them from knowing that they could raise me. In their minds I was just as normal as their other children. As I grew and developed, it became clear that my problems would be more physical then mental. From an early age, I was blessed with a very good intellect. My ability to remember has always come in quite handy; my good memory seemed to serve Mom and me both well, because she always had a knack for misplacing her keys, money, or anything that she needed to keep up with..

Like most African-American parents, mine chose to spank as a form of discipline.

I think we all got our share of whippings. My father only gave me one good

spanking as a child, when one day I was fighting with my brother and we were told to stop. I must had been around three or four years old at the time, and Daddy had never yelled at me, let alone hit me. I guess I did not belief that my daddy would ever spank me. But this day I think I really pushed him, because after several warnings to stop picking on my brother, my beloved father turned me over his knee and gave me a good spanking. My parents said that for years I got sick right after daddy whipped me, and that is why he never gave me another one. That might have been my father’s story, but it certainly was not my mother’s.

My mother had no problem with giving me the kind of discipline that I needed. On those occasions that I acted up, and there were more then a few, my mother did what she knew she had to do. Yes, she spanked me, and she was not afraid that I was so fragile that I would get sick. If I did get sick my mother would say “As long as it don’t kill her, she will be fine.”

Now I realize that times have changed, and parenting standards have become more lax than they were when I was a child. However, I am happy with the way that my parents raised me. I am so grateful for parents that cared enough about their children that they gave us the kind of love and discipline that will carry us through the rest of our lives

Once my brothers and sister adjusted to the idea of having a disabled sister, it was on… We played, fought, and screamed at each other on a regular basis. My two brothers majored in getting out of tight spots, and on a few occasions, I was at the scene of those crimes.

We grew up in the house that our dad build four years before I was born. It was a big house with room enough for a big back yard, patio and garage. A long driveway was a straight shot from the street to the garage. We had an old car that the brakes had gone out on, so my parents were not driving it anymore. It was a hot summer day while Mom and Dad was at work, my brother Oswald who was “in charge.” He found a spare set of keys to the brakeless car, and decided to teach himself how to drive

Since he was supposed to be looking out for me, he put me in the car with him, and drove up and down the driveway of our house. Oswald figured out how to stop the car by pumping the brakes when he wanted to stop. These “driving lessons” went on for a week or two before my parents found out. It was not so much that my brother who might have been eleven at the time, was trying to teach himself how to drive, but it was how my parents found out that put a real cramp in the driving lessons.

One day while Os was doing his routine of driving up and down the driveway and stopping when he wanted to, on about our third trip down the driveway Os tried to stop the car, but it wouldn’t. Getting out and inspecting the damages, Oswald and I knew that we were in some major trouble. It was about that time that our older brother saw what had happened and offered his help.

Kenneth was fifteen and had been working with Dad on some of his jobs doing plastering, and so he decided to help his little brother out, and fix the garage door before our parents got home from work that night.

Of course, the garage door was bent in, and the paint job that my mother had spent weeks working on was completely demolished. The car was not in great shape to begin with, but now it was really messed up. But Kenneth was going to save the day, and put it all back together before Mama and Daddy got home.

To say that it would had been better if Kenneth had left things alone is an under statement. By the time my dear big brother was done, the whole garage looked liked it needed a makeover. Us just walking around, unhurt, after the crash was a miracle, but a bigger miracle would be if Mama and Daddy wouldn’t notice that part their house was practically destroyed.

When our parents got home, they said nothing; no one said a word about the house or car the entire evening. We ate dinner and went through our normal nightly routines. Daddy read his paper and Mama tended to household chores. It was like the pink elephant in the room that no one talked about.

Somehow, my brothers thought they had gotten away with wrecking the car and tearing up the garage door; although, I don’t know why. Just before it was time to go to bed the pick elephant surfaced. Daddy walked into the boy’s room and calmly asked, “Boys, what happened to the garage door?” My brothers tried to keep it together and lie their way out of it, but their lies fell on proverbial, deaf ears. Because Daddy believed that you should never whip out of anger, it was the next morning before my brothers got their punishment.

At some point, I got it into my head that I could drive a car. Now those people who know me and see me every day, know that this would be a very hard and risky feat for me to even attempt. Daddy thought that it was important for me to be able to, at least, try new things to be able to accomplish whatever goals that had I set for myself, so when Dad said that he would teach me how to drive when the time came, I was elated. ,

Fortunately or unfortunately, depending on how you look at it, Daddy never got around to keeping his promise. He died shortly afterward; therefore, the decision of whether or not I would learn to drive fell on my mother’s shoulders. She, being a practical woman, and knowing that she never wanted to outlive any of her children, would not even entertain the thought when I broached the subject of my learning how to drive.

One day when Mama and I were fighting about whether my coordination was good enough for me to handle a car, my older, somewhat wiser brother, Kenneth, came home.

This was the same brother who tried to fix the garage door. Kenny saw the state that I was in with trying to convince Mama that I could drive. Later that night, he had to go to the store, and he asked me to go along just to get me out of the house for a while. We were on our way back home when Kenny pulled over to the side of the road, about a block from our house, turned to me, and said, “Do you want to drive the rest of the way home?”

Well of course I did. After all, this was my big moment, the time that I would be able to prove to Mama, finally, that driving for me would be a piece of cake.

Kenny and I changed places, and it felt great sitting under the steering wheel for the first time. The feeling of true independence in a simple thing like driving a car was one of the great joys of my life. Unfortunately that delightful feeling of freedom lasted only a short while.

Once I felt at ease being at the wheel, Kenny instructed me to turn the key, put the car in drive, and give it a little gas. I got the key part right, I got the part about putting the car in drive right. It was the part about giving it a little gas that seemed to mess me up.

`We took off down the road at breakneck speed, but I couldn’t seem to coordinate my feet well enough to find the brake. I had no control of the car, and it is a good thing that Kenny kept his hands on the wheel. When we finally got home, after running into a garbage can or two, and narrowly missing a streetlight, I ran into the house to share what I had done – and to tell my mom that from that day on, I would be catching a bus.

As in any family, we each had our own issues. All of my siblings have had drug problems that I knew all about. They kept nothing from me as far as knowing when they got in trouble. When I think back on those days, I can say that if I had to compare my life and my problems with theirs, I had the more normal life.

I do not think I got special treatment. I was praised when I did something good, and I was disciplined when I broke the rules. I was taken to church and raised in the same faith as my brothers and sisters. I ate all meals with my family; I had sleepovers with my friends, and when I acted like a typical spoiled baby sister, my sister and brothers were sure to let me know about it

I was eight years old when I became an aunt for the first time, and the birth of my nephew was a mixture of both joy and sorrow. My sister turned sixteen the day after she gave birth to her son. Anthony was a great gift to our family, and for a while, I was no longer the baby. I think once Anthony was here he brought hope to my parents, and for me he was a wonderful playmate.

When Anthony was six months old Mama discovered that he could whistle. At age, two he could run like the wind. He told on everybody, including his own mother. Anthony never noticed any difference between us. When we would go out and play, and he had to take my bike down the driveway, he was not fazed.

Anthony taught us that life could be very short. One day he was running around a happy little three-year-old, the next morning when he woke up, he complained to Mama that he was not feeling good. Mama did what she always did when one of her kids was sick, she put him back to bad and kept a close eye on him during the day.

Anthony slept all that day. Still, mama was not concerned. She thought he was just coming down with a cold. During the evening, Daddy checked on him and he still was not feeling good, but no one was alarmed. Early the next morning when Daddy went to check on him, Anthony was burning up with a very high fever.

Mama and Daddy rushed their first grandchild to Valley Children’s Hospital. The last words that Mama said she heard little Anthony say were, “Mama, I want to go home.”

When the doctor’s examined Anthony, they found that he had spinal meningitis. One-week letter Anthony went home. December 20 1968. I still miss him.