Dad's Dissappiontment

It is hard to know what really went on in my Dad's mind. It is also hard to know if he would have treated me the same way he treated me if my brother was not handicapped. Looking back, it appears that my Dad was angry his son was handicapped and the one who was not handicapped was a girl. Since my Dad had a business (Baker Brothers) after his name it seems he was dissapointed his son appeared unable with his handicap to follow in my Dad's footsteps and someday carry on the family business. I guess he didn"t think a girl could fill those shoes.
What brings me to that conclusion, is that ever since I can remember he always let me know that whatever I did, did not meet his standards or expectations. I was never told that I did a good job or that anything I did was satisfactory. There were no hugs or pats on the back. One thing he did affects and haunts me to this very day. At the dinner table he sat on the left side of of me where I was within his reach . He start by talking to me about how I needed to be more ambitious and how he admired the neighbor boy because he drove a tractor and Dad would ask me why couldn't I be more like the meighbor boy, Dennis N? This lecture on my 'laziness' and his desire for me to be a hard working , ambitious, diligent gitl usually escellated into yelling and getting backhanded over my head. These episodes seemed to go on and on and they happened quite frequently. My Mom sat on the other side of the table from me and Ben sat on my right side across the table form my Dad. These beatings across my head at the dinner table went on till I was 17 years old and left home.
It is hard to know if it was his anger over having a handicapped son or if he would have done that to me anyway. There were also occasions when Dad would be angered at Ben and would back hand him back and forth across the head too. The sight is burned in my brain seeing the wheel chair jerk from side to side with each blow of my father's hand. This has caused me a lifetime of guilt being younger and defenseless all I could do was endure. My mother was completely silent about what she saw. She never comforted Ben or me with any words that we did not deserve the head beatings Dad gave us. I grew up thinking that I was less than everyone else and that I was unattracrive and stupid and incapable of doing anything very well. My Dad was a very well respected business man in our little town of Hilmar, California. His little corporation of automotive parts and chemicals grew to serve most all of California. He had distributors covering all of our San Juaquen valley, Sacramento, Los Angeles, Bakersfeld, Sierras, Bay Area, Yreka, Redding, and towns in between. No one would ever have believed what happened to Ben and me behind closed doors. You can see why Dad would have wanted a son to come behind him to carry on the 'Baker Brothers" corporation. There was not much time or attention from Dad for Ben and me other than "correcting" us.
I know Dad did the best he knew how and something must have happened to him in his childhood for him to have been able to treat Ben and me the way he did. I loved my Dad anyway because he was my Dad.
Next time I will tell you about our Mother.

My Dad's dissapointment

My arrival in the family

In 1949 When Benjamin was 2 years old he became a big brother to his sister, Susan. That, of course, was me.
My Father was returned to the States from Japan, where he had been stationed in the Air Force when my brother, Ben was born. The Air Force stationed the family at Castle Air Force Base in Atwater California where I was born. I was told that because of the extra care needed by Ben that my parents decided not to have any more children since my Mother feared she could not care for any more than one more child besides Ben properly.
Dad was a Master Sargent in the Air Force and taught airplane engine mechanics for only a couple more years after I was born. I don't have any memory of him in the Air Force myself, but there are many pictures of him.
We lived so far out in the country that there were no neighbors and no one for me to play with. It was a very lonely existance with both of my parents so busy and I could only play with Ben in limited ways. Ben and I could only play where we would be in one spot. He couldn't hike and run with me outside. Sometimes he would be outside with me in a wheel chair or in our little kiddie pool. We lived on 40 acres of farm land and there was nothing but farm land all around. I learned to occupy myself with things I could do alone like jump rope, jacks,play dolls, hike around the country, play in the sprinkler or mud. I also learned to love reading and would lay out on the lawn with my dog for hours reading books. There was also a tire swing hung in a huge cottonwood tree that would keep me occupied for hours. I also learned to enjoy sewing. Everything I did was alone. Looking back I realize this caused me to think I had to do everything alone and carry all responsibility for everything and everyone, resulting in overload throughout my life.
My Dad had seven sisters with families and my Mom had only two brothers. They all lived mostly out of state or many miles away. There were occasional visits but not enough to really form relationships with any of the Aunts or cousins. My grandparents on my Mom's side lived in Clarkston Washington so we saw them around once or twice a year. Hardly enough time together to build a relationship either.
My parents took us to Sunday School every Sunday. This was the only exposure and opportunity to play with or get to know other children. I met my best friend there and we are still the best of friends to this day.
We had two dogs named Tippie and shaggie. They would find an old rag or rope and each one get on an end and play tug of war all the time. It was fun to watch them. Then one day Tippie got hit by a car and I remember her laying on the porch dieing and I was so sad no one was helping her. After she died Shaggie wouldn"t eat anymore and he went off and died of a broken heart.
As my Mother worked long hours keeping the house perfect and cooking very nice meals for the family she also worked with my brother so he could learn to walk in crutches and braces. Even though she was told by the doctors that Ben would never walk she still did everything to give him the chance. Ben started out in a large brace that went from his feet up to his back. I still remember that huge thing. Then as he got stronger he was able to walk with braces that went the full length of his leg only. I remember every morning Ben sitting on the floor putting on his braces. As he grew in size and strength he was able to advance from those full leg braces and crutches he supported himself fromj under the arm to braces just above the ankle. This was a far cry from the diagnosis given to my parents at the birth of Ben that he would never walk or talk. Boy, did he learn to talk. He was very verbal.
There was little interaction between my Dad and Ben. My Mother seemed to have the whole responsibility for his care.
Dad was out of the Air Force after a couple years and was building an automotive parts and chemicals business. He formed a fleet of distributors and had a warehouse to store truckloads purchases from manufactures. This growing business kept my Father occupied all the time. My mother helped him besides caring for my brother so I was left pretty much to myself most of the time. I was painfully lonely.
I find it challenging to bring back to life those years so long gone and most of them not pleasant to remember either. Although I miss my brother very much and as mean as Dad was to me, I miss him, too. As for my Mom, I miss the Mother that used to live in the shell she exists in now. She is 91 and has a form of dementia and doesn't remember my brother, my Dad, or anything or anyone. She. for some strange reason, she knows and remembers me. Dad was very good to my Mom. In fact, I never heard a cross word between them and he never raised his voice to my Mother. He was always affectionate with her. I guess it was common in those days not to hug children. Even though my parents hugged all the time, they never hugged Ben or me. Dad yelled at and hit Ben and me, but he never was like that toward my Mom.
Next time, more about the progression of our family with a handicapped child and more pictures.

About My Brother Benjamin

Benjamin Baker in the top picture as the Easter Seal Poster Child of 1954 in California with a spokeswoman for the Easter Seal Society. This photo was taken in San Francisco in 1954 when Ben was 6 years

The newspaper photo is in our Turlock Journal with an article and picture about the special swim lesson class especially for the handicapped. The next photo is a school picture of Ben when he went to John C Fremont school in Merced California where they had a special class for handicapped children. See the crutches under his arms in this picture. My mother had worked very intensly with Ben to learn to walk with crutches and braces on his legs.
My brother, Ben, was always good natured. Notice his smile and the happy nature he projects in this picture. He was very friendly and loved greeting everyone enthusiastically. He never complained or spoke negetively about anything or anyone. Ben was the best example to me of many great characteristics and qualities. He was meticules, neat and tidy. He never left messes or anything out of order anywhere he went. He had numerous excentricities that could try ones patience that were a result of his handicap. He repeated motions several times rather than once. For example, if he rolled his wheel chair through a doorway he wheeled it in and out several times, tapping his hands on the doorway repeatedly before the motion was completed. There were many oddities of this nature we just accepted and patiently waited as he went through the motions needed to complete his task. When he sat for a length of time or got a little anxious he moved his arms and head in a constant rolling motion as if to make up for the lack of use of his legs in walking and running. I have often wondered if anyone else in the world had a loved one with spina bifida or any other handicap that had these same type of behaviors.
Unlike some siblings, rather than being ashamed of Ben, I was proud of Ben. I felt he was a very special person and I was lucky to have him for my brother. He loved people and animals and he dealt with his life and situation with such bravery and strength. I was never ashamed when we went in public with him even when we were children because he was my brother and I loved him alot. I thought he was the greatest brother anybody could ever have. I was angry when sometimes as children other children would stand and stare at him as Ben stood in his crutches and braces.
Ben loved cars and he read all the car publications. He knew all about all the cars throughout the years as he memorized every detail he read in those magazines. His memory was a phenomina. He could remember names, dates, events, and addresses from almost his whole life. He could recall the day of the week, date, month and year of events.
Next time I will continue with the life story.
I invite others to share thier experience with their handicapped siblings.

A Christmas gift from beyond

My next plan was to tell you about my brother, Ben. But what happened Christmas morning changed my plan.
I awoke Christmas morning in my house alone and feeling very sad. I was remembering the Christmases over the past ten or more years I picked Ben up to have him in my home over the Holidays. I was feeling quite depressed and missing my brother. I guess I forgot to mention Ben died four years ago.
I finally pulled myself together and got in my van to pick up my Mother who has Alzehiemer's to spend Christmas with her. After I picked her up I got a whim to get my mail at the post office. I lingered in my van looking through the mail when a woman appeared beside my van. She was a complete stranger and she indicated she wanted to speak to me so I rolled down my window as she proceeded to tell me when she saw us in the van she was compelled to give me a message. She asked if the woman in the passenger seat was my mother and I said she was. The woman said there is a man who was especially close to me, someone who died. Puzzled, I mentioned my Father who passed 38 years ago. She said no, perhaps a brother. I crumbled into tears immediately as she proceeded to deliver a message she said was from him and it left me dumbfounded. She began by telling me he wanted me to know all that incumbered him here is gone. He is happy and busy. He wants me to know how grateful he is for all I did for him. He wants me not to be sad and when I am sad to think about.......and my mind goes blank of all she said he wanted me to think about when I'm sad. I cried as I listened to her speak for about five minutes. I told her I felt guilty for not being able to do more for him. She said he wants me to do something for myself. That I do everything for others and that I must do something for myself. She said he was given an opportunity to deliver a message to someone and he wanted it to be me. She said he sent guardian angels to help me for the rest of my life, but I need to let go and allow them to help. He wants me to stop and smell the roses, breathe, and not be sad. She told me he has a special place in Heaven. Strangely enough, when he was alive, I used to pray that God would give Ben a special place in Heaven because I knew this life couldn't offer him any fulfilment, happiness or freedom. It is very hard to remember all that she said and even put back into words much of what I do remember. It was such a shock. How could this be? Was she real? Was it a trick? What was it? Was it really a message from Ben? She could not have known anything of the things she spoke. Everything fit. All I can hope is that Ben is in an existance of freedom and happiness like she said he is. She said he had only a few short minutes then he would go and when she finished her message she would be gone. She never said her namd and didn't ask mine. This is one of the strangest things ever to happen. But I did tell her it was the best Christmas present I could ever get.
I will tell you next time about Ben then proceed with the life story.
Susan

Getting To Know Me

Before continuing with my story I want to share with you about me. This year was my 60th birthday. 40 of those years were devoted to raising my six children. Heath and fittness is very important to me. I raised my children on fresh, unprocessed foods and ground grains fresh for homemade whole grain breads, muffins, cakes etc. We only used honey and there was no white sugar or flour in our house. No drugs were used in my home. That means no asprin, no antibiotics nor over the counter or prescription medications. I made everything from scratch besides bread was home made yogurt from raw milk and "green drink"
All but one of my children were born naturally with no drugs. The last three were born at home. My youngest child, Michael, was born at home without the doctor.
My passion for "natural living" came from my Mother, Grandparents and Aunts.
Over twenty years ago I experimented with some tie-dyeing that developed into the clothing business I have now. R.A.D.Rags. The pictures on my clothing website ( www.baddragz.com ) of me were taken early this year. Pictures of this year's additional styles did not get on my website.
The purpose for writing my story is to connect with others, who, like me, feel alone in their struggles.
Now the kids are grown and gone. I am alone and my mind is still prisoner to the programs innocently installed into my head by my parents while growing up with my crippled brother born with spina-bifida. The depression and dissapiontment I suffer daily I hope to spare other siblings of handicaps as their parents read my story of tragidy and saddness to see how these programs in my head caused choices that led me to sabatage my happiness, my finances, my peace, security, and sanity.
A parent of a handicapped child can either empower both the nonhandicapped and the handicapped child to live their full potential. They can instill self worth and value into them for life. Or, like what happened to me, they can make cripples of both the handicapped and the non handicapped for life.
You will see through out each stage of my life, in spite of my efforts to change these destructive patterns in me, I did not. It cost me everything. Maybe my story can spare some who are children now of repeating my tragedy.
The handicapped sibling is a piece of the whole family puzzle that changes the entire family picture. Each parent's own feelings and responses about their handicapped child makes them communicate and interact with us ( the non handicapped children) in a way that either strengthens or crushes us. in my case my father's dissappointment and grief toward my brother, Benjamin, caused him to crush me. It was too much pressure on me to make up for the loss he felt in his oldest son. I was not able to fill that loss for him and the burden was one I have not shaken to this day. I beg any parent of a handicapped child to see the non hadicapped child for who he/she is and not to make them fill your own personal void.
We all MUST change our lives, disregard our own feelings, needs and desires as children while growing up with our handicapped sibbling. For me, not learning a different way has resulted in disaster and great losses in my adult life.
I hope in my story parents who are raising these very special handicapped children will remember their other children still have needs in order to grow up whole and balanced.
Till next time. I have so much more to share and am eager to hear from other adult siblings of the handicapped.
Susan

Home On Leave and back

After many months away in the Air Force my Father returned home on leave to find his girlfriend, Goldie, my Mother married to a school teacher. Thinking Frans forgot her, my Mother was influenced by my Grandmother, who did not care for my father because she though my Dad was a "farm boy".
After five years of marriage to the school teacher my mother was very unhappy. She would never have children with him and she wanted children. She filed for divorce, got a little job, and moved away.
My Father got wind of the good news, contacted my Mom and they married.
My Mother wanted healthy children so she planned a strict healthy diet in preparation for having a baby.
My Mother was due with her first child while my Dad was stationed in Japan. The plan was for her to join him in Japan after the baby was born. When my Mother gave birth to my brother and he was born with spina-bifida their plans were changed. My mother was told that if my brother lived through the surgery he would never walk or talk. They told her he would be a vegetable and would only live at most till his teen years. The Air Force brought Dad back to the States to be with Mom and his newborn handicapped son with spina-bifida.
They were stationed at Castle Air Force Base in Atwater, California. He was a Master Sargent.
Surgery was done on Benjamin to close the open spine when he was three months of age. This was before the discovery of the shunt. Ben never had the shunt. My Mother was very dedicated to working with Benjamin.
Next time I will continue with the arrival of Benjamin's sibling---me, Susan