Archive for the ‘sibling with disability’ Category

I Am a Certain Thomas

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My life has been blessed with the certainty of God’s existence. My brother was born multiply disabled with Rubella syndrome, (a warning to those who do not believe in immunizations.) He was almost deaf, blind, severely developmentally disabled and had a cleft palate, along with several other physical anomalies. My mom spent the first few months of his life sobbing on her bed. It was a confusing time for me as a child…my mom was not available to me, this new creature in my house mewed like a kitten for hours on end, and my dad did everything he could to not be home. Then, one sunny, warm day, my mom sat in the sun parlor on a rocking chair, rocking Curtis as he cried his kitten cry. Then a miracle happened…she was visited by the Holy Spirit. He/she came right on in, with a brightness that far surpassed the streaming sunlight, a brightness that would have been blinding were it not for the fact that it wasn’t. With a warmth of all encompassing love and joy. With a deep understanding that was somehow passed along to my mom. My mom stopped crying that day, and never again cried for my brother. Instead, he was raised with love; encouraged to do his best and accepted for what he could do, not what he couldn’t. My young life was so awesome after this experience! I have lived with that spirit in my heart; joyful and loving. Accepting and encouraging. Yet humble and in awe of all that life has to offer.
While that one experience changed my life, it was another experience that cemented my belief in the existence of a higher being. We traveled much during my childhood, and once we stayed atop a mountain, reveling in the views of the valley during the day and surrounded by pitch darkness at night. It was a time I valued having a campfire, sitting next to it with my poking stick, playing with the coals and listening to the gentle sounds of the night. Sleep came easily. I was awakened by an unbelievably loud noise and shaking of the earth, as though the whole mountain had exploded. The sound was so intense and unusual that my first thought was that it was the end of the world. In that instant, as I imagined “the end“ was near, an incredible sense of contentment and love immediately washed over me, with the joy of anticipation of a peaceful after-life. As silly as it sounds, I was actually disappointed to learn that the noise was just the sound of the thunder high in the mountains. What kind of person, especially a child, would have that thought????? I should have been frightened beyond belief, but I wasn’t. While my experience may lack scientific validity and meaning, it affected me deep in my soul and has deeply influenced the way I live my life.
Since that fateful night on the mountain, there have been a few more wisps of God in my life, the most notable being the unexplained healing of my daughter, Dinora’s deafness.
Many Christians heard the Gospel story of Thomas last Sunday. Thomas was one of Jesus’ disciples who would not believe in Jesus’ resurrection until he put his hand in Jesus’ side to feel his wounds. Since has come the term “Doubting Thomas”. I am Certain Thomas because I have so fortunately been given a rare sight into God’s existence, an existence of which I am sure and without doubt. It has been natural to live my life the way I have, and to do it with love and joy and acceptance. I’m not doing anything extraordinary, only what is natural given my knowledge. It is so much more meaningful for those who life similar lives, helping others, raising children, being peacemakers, donating material and monetary possessions, and loving others without qualification. They do so out of faith without proof, an amazing accomplishment for sure!
How would YOU live your life differently if you knew, for sure, of God’s existence?

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For more stories about my childhood, please, read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

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He Ain’t Heavy, He’s my Brother

I led a very untraditional lifestyle when I was growing up.  My father, whom I later realized was schizophrenic, had the wanderlust to travel, which our family did for about 6 months of the year. He would remove me out of school and we would take off for various areas of the country, living in our Volkswagen van. ( Although I am sure that today’s public education system would not allow it, somehow I think my father would have taken me out anyway.)

It was quite an adventure for a child like me.  I have a vivid memory of cracking eggs in a big, black, iron frying pan over a campfire in the Badlands in South Dakota.  The rocks the pan was on were not sturdy, and the pan fell sideways with the eggs slowly leaking out onto the pine needles on the ground.  (Clumsy then…still clumsy.) I remember traveling in southern Georgia, driving for miles watching red clay cover everything…the houses, the cars, and even the clothes hanging on the lines.  It was at the beginning of the civil rights movement, and I was uneducated in this area, (probably because I didn’t go to school!) The whole concept of a bathroom for “whites only” was a shock to me.  Did that mean that only people wearing white clothes could use it?  (I’m picturing nurses, dentists, pharmacists…)  I couldn’t use it because I had on my only pair of pants, jeans, and a multi-colored t-shirt. But I had to go to the bathroom baaaaad, where would I go?  Behind the bushes? How degrading!  My misunderstanding of this concept is now a slight reminder of what it felt like be African American in the 60’s. I also have the memory of  a bear at Yellowstone Park coming onto our campsite to eat our dinner as we all huddled in the car. My brother, Curtis, was upset because he had left a package of Cracker Jacks on the picnic table.  We had to restrain him from leaping out of the car to get it.  Afterwards, I was not so keen to sit by the campfire…

But most of all, I remember my constant companion; Curtis.  He was four years younger than I was, and he had been born with Rubella Syndrome; developmentally delayed, cleft palate, legally blind, and severely hearing impaired.  He was my buddy.  Because my dad was extremely frugal, (ie obsessive compulsive disorder frugal,) I did not have many toys to play with.  So, in addition to reading a lot, I played in our surroundings with my brother.  I have a memory of  sitting by a stream, sun shining down on the water through the leaves on the trees. Curtis was happily splashing about in the shallow water.  I was looking for rocks that somewhat resembled people.  (They were no Barbie dolls, but some kind of looked like Alfred Hitchcock and Potato Head.) All of a sudden I heard a whoooooosh!  Curtis had ventured too far into the water and the current started to carry him downstream!  Fortunately, I had long, slim legs (in those days,) and with a few strides, I picked him up by the back of his pants. He was laughing heartily.  To him it was a real adventure.  Like the poor person’s substitute for a ride at Disneyland!

We actually had a lovely childhood together. I had to carry him everywhere because he could not walk sturdily.  Carrying him was just a natural way of life for me.  I don’t know why, but I never thought to be embarrassed by him, (although his screeching and attempt at speech WAS pretty scary).  I never ever thought of him as a burden.  He was just my buddy, Curtis.

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My parents rarely took pictures.  (The money thing again…) But I do remember ONE picture.  It was a picture of me and Curtis, standing in front of Mount Rushmore.  I was characteristically giving him a piggy back ride.  The photo shows Curtis, looking over my shoulder, eyes squinted shut by the glare of the sun.  I was wearing a stupid, treasured, red velvet derby hat, (you know, like jockeys wear.) As the dead presidents loomed behind us, I gave my characteristically stupid, toothy grin, (like all children do when their parents ask them to smile.) And on that day, I first heard the song from Neil Diamond which fit my sentiments exactly: “He Ain’t Heavy, He’s My Brother”.  It was a powerful moment to think that someone had put into words what my life was like.

I was so very lucky to have been raised the way I was because it formed my personality, my temperament, and my compassion for others. I personally cannot take credit for the way I live now, fostering and adopting children. I am not selfless, nor amazing, nor wonderful, nor any of the other adjectives readers have used to describe me. I am simply living my life the way I was raised and it is a wonderful life!

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Link to my book  The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

 

He Ain’t Heavy, He’s My Brother Lyrics

The road is long

With many a winding turn

That leads us to who knows where

Who knows where

But I’m strong

Strong enough to carry him

He ain’t heavy,he’s my brother

So on we go

His welfare is of my concern

No burden is he to bear

We’ll get there

For I know

He would not encumber me

He ain’t heavy, he’s my brother

If I’m laden at all

I’m laden with sadness

That everyone’s heart

Isn’t filled with the gladness

Of love for one another

It’s a long, long road

From which there is no return

While we’re on the way to there

Why not share

And the load

Doesn’t weigh me down at all

He ain’t heavy he’s my brother

He’s my brother

He ain’t heavy, he’s my brother

He ain’t heavy, he’s my brother

written by Bobby Scott and Bob Russell

performed by Neil Diamond in 1970

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Link to the Readers Digest review of my book:  http://www.rd.com/recommends/what-to-read-after-a-hurricane/

Angels Among Us

First blogged January, 2010

My mother passed away several months ago and it has taken me this long to write about it.  She was the most wonderful mother in the whole world, (and I am not just saying that because that is what one is expected to say about their deceased mother.)  In addition to being kind and loving, she was also very spiritual.

I remember when I was four years old and we lived in Opalaka, Florida, right behind the Hialeah Race Track.  We had a cement swimming pool in the backyard which my father built, and next to it was a palm tree my mother had planted crooked so it was growing sideways.  I had a green parakeet whose name I certainly don’t remember, and I loved watching Howdy Doody and Captain Kangaroo on our little black and white tv with the rabbit ears antenna.  My brother was born one day in March, and life suddenly changed for our family.  My brother was born with serious disabilities due to Rubella Syndrome, (supposedly my mother had been exposed to someone with German Measles.)  With a cleft palate, he could not nurse or drink from a bottle, so he was fed by a large eye dropper. He could not such on a pacifier and he cried constantly.  He was blind and deaf and was obviously going to be severely developmentally delayed. My joyful childhood was suddenly overshadowed by a sadness of which I had never seen from my mother.  I would witness her throw herself across her bed and sob. A deep sadness enveloped our family. I looked at my little brother, who looked so innocent and little to cause such a fuss.

One day, when the sun was shining brightly and Curtis was asleep, my mother called to me to come sit in the rocking chair with her.  She squeezed me and held onto me tightly, rocking  and crying.  It was a different kind of crying, though.  A happy cry, if I could describe it as such.  From that day on, the gloom lifted from our house and I went back to living my happy childhood with my new baby brother.

Many years later, when I was a young teenager, my mother shared her experience of what happened to her that very day.  The doctors had been encouraging her to put my brother “away”, institutionalize him as was the custom in those days. “Forget about him,” they said, “You can have another child.”  She could not bear to make the thought of doing this.  Then, on that sunny day while rocking in her chair, she told me she was visited by an Angel, a beautiful, bright white Angel.  She told me she could feel the weight of the Angel’s hand on her shoulder, reassuring her that everything was going to be okay.  Although the Angel did not speak, she knew what the message was.  She did not have to worry anymore, her son would be fine, and he was.  He wasn’t fine in that he suddenly became perfectly healthy, but he was fine in that he has led a happy, fulfilling life. Clearly, she had been touched by something spiritual on that day to turn her torrents of tears into smiles of joy over her new baby.

Several years later, while camping high in the mountains, my mother woke up from her sleep and sat up in her sleeping bag.  She was joyous!  She told me she had been to see God, whom she described as a bright and beautiful. She said it felt real, not like a dream at all.  She was confused as to the experience because it seemed as though she was there to help a friend pass over into heaven.  She did not understand because of course her friend was healthy.  It was not until we returned home from vacation that she learned that this friend had died from a brain aneurysm on that very night at that very time.

My mother lived a life of  great happiness and contentment, always seeing the good in people.  Near the end, right before she died, I stayed with her 24 hours a day.  When we knew death was near, the nurses let me lie in bed with her and she passed away in my arms.  I don’t know what I expected when she died.  No…that’s not true…I expected to see some of what she had experienced!  I expected to see her pass into heaven!  I expected there to be some reaction from her body, some knowledge that her lifetime of spirituality would somehow, through osmosis, pass through to me.  But there was nothing.  She just stopped breathing. And there was nothing.

It took me a while to accept her death, and I became angry that there was no sign from God that she was with him.  Realistically I knew this was silly, but I was hugely disappointed.

Christmas time came soon afterwards.  As the parent of 5 children, I had this habit when the children were younger of taking a picture of their sleeping faces on Christmas eve.  As they aged, they hated the existence of these pictures!  (They were usually sucking on a “binky” at the time and girlfriends and boyfriends who saw the pictures in old photo albums would always go “Awwwwwwwwwwww, how CUTE,” the most mortifying thing that could happen to a teenage macho boy!)  This Christmas eve, filled with nostalgia, emptiness and sadness,  I again went into each of their bedrooms and gazed at their sleeping faces.  I was suddenly filled with a great sense of purpose and contentment, much like the type of contentment my mother might have felt when she felt the Angel’s hand upon her shoulder.  These were MY Angels.  These were my children who had endured so much when younger, either with their disabilities or with indescribable child abuse. They have not only survived, but they have THRIVED.  They are happy and loving and successful and they have bright futures as adults.  This is miraculous to me!

Raising 5 Kids With Disabilities and Remaining Sane

Raising 5 Kids With Disabilities and Remaining Sane BlogMy name is Lindsey Petersen and I am the proud mother of five wonderful, very interesting children. Four also happen to have disabilities, but these have not been overwhelming obstacles.My oldest son, Francis, is legally blind. In this blog  I recount several humorous stories of his upbringing, including his fear of skunks. (He was petrified he would step on a skunk he didn’t see and it would spray him! He HATED tomatoes and the thought of having to take a bath in tomato juice was horrifying to him!) He managed to graduate college and obtained a full scholarship to Cambridge University in England to obtain his Ph.D. He has since become Dr. Scooter, (his nickname from college, named after Scooter from the Muppet Babies). He has obtained his dream job at an unbelievable salary!My 25- year-old daughter, adopted from Guatemala, came to us profoundly deaf, but was “healed.” (Read all about it in my blog!) She obtained her college degree in International Business and also has a job in her field.  She lives nearby with her boyfriend, her 2 year old son, and her percolating baby to be born in July.My 18-year-old son has a long history of autism, obsessive compulsive disorder, attention deficit hyperactivity disorder, and a severe sensory integration disorder. It really doesn’t matter what his disability is diagnosed as, I only know he was born cocaine and heroin addicted to an alcoholic mother, and his nervous system is wired haphazardly! He has managed to utilize his obsessions with reptiles into a volunteer position at a reptile educational facility. He is the one standing in the doorway at the entrance to the facility holding the 6-foot long boa constrictor, or the alligator, or the large lizard. He is not good with people, but great with reptiles! He has also recently become trained as an “alligator wrangler” for their alligator shows. (Really!)My 15-year-old son was severely abused prior to coming to live with us at the age of four. He developed dissociative identity disorder, (multiple personality disorder.) Life with this disorder is every day life for him. He and his “peeps”, (his name for his personalities,) live an interesting, eventful and sometimes very frustrating life, (like when one studies for the social studies test and another one takes it and flunks!)My 13-year-old daughter who is profoundly deaf came to live with us at the age of seven when the police found her wandering the streets carrying her infant brother looking for food. She was supposed to be a short-term placement placed with us because I know sign language. (I’m sure many foster parents have heard this spiel about a short-term placement.) Six years later she is still with us, adopted at the age of ten. Her deafness is not a disability, but her post-traumatic stress from early abuse and her attention deficit hyperactivity disorder have caused serious problems for her.

I am also the loving sister to a brother who is severely developmentally delayed, legally blind and deaf due to rubella syndrome. He also unfortunately developed schizophrenia when he was eighteen years old.

While my children’s lives may not normally be considered amusing situations, I try to look at them in an upbeat, positive, and sometimes humorous manner. I am a happy and optimistic person by nature, and to dwell on their problems would make me sad, a feeling not in my repertoire.

I began writing this blog in August because I was looking for a stress reliever. It is amazing how cathartic it is to vent one’s frustrations in writing! Also, I have had so many unique experiences and adventures that many acquaintances have suggested I write a book. I started writing the blog not so much with the thought of writing a book, but with the thought of putting down these events for posterity, so to speak, and to share my experiences with others. In the process, I’ve reduced my stress level and I have been encouraged by the more 20,000 people who have read the blog. I am sure our adventures and misadventures will continue. (My daughter who is deaf and has sensory issues and cannot stand tags in her clothes has entered junior high school, how is she going to be able to wearing a bra? My son with autism has started to notice girls. Unfortunately for him, girls are usually not very approachable when one is carrying a large snake! My son who has dissociative identity disorder, with the assistance of a specialized psychologist, is searching into the deep recesses of his mind to discover the abuse, which led to his disability.)

Thanks for joining me.  It’s nice to know someone “out there” is listening!

My Brother Says Goodbye…

I took my brother who is developmentally delayed, legally blind, autistic, profoundly deaf and schizophrenic to visit our mom for the last time before she passes away.  I was worried about how it would go.  We walked into her room and she lay in bed.  She seemed to perk up a little when she was told Curtis, her beloved son, was there to visit with her.  She didn’t perk up enough to open her eyes, but she did start to talk, albeit mostly nonsense.  Curtis held her hand and rubbed her back.  He was talking to her, and because he could not hear, he did not realize that she was not really talking to him.  He was talking about himself, of course.  Was there a restaurant around the nursing home where I could take him to eat?  Did they have pie?  He then went and got her a soda from the soda machine and opened it for her.  Soda is Curtis’ most prized item.  He gave it to her, saying he wanted to do his best to make her last days better.  He then told her she was lucky because she had the pleasure of his visit because he was good company and he rubbed her back.  After an hour or so, I had him say good bye.  Not being a demonstrative person, he did not know how to hug.  I felt it was important for him to hug her and kiss her good bye, so I helped position him so they could hug.  It would have been laughable under any other circumstances.  He was stiff like a robot and clearly was not comfortable showing affection.  So he took her hand and shook it, and said “It has been nice to know you.  Let me know when your funeral is because I might want to attend!”

On the way home, Curtis was quiet for a while.  He said “Something has been missing all week and I didn’t know what it was.  Now I do.  I was afraid I would miss saying good- bye to my mother.  Today I was able to give her a soda and rub her back,” (2 things she had always done for him when he was sick.)   “I feel better now.”  This was such a profound statement coming from someone who usually did not think rationally.  Of course, true to his character, he asked to stop for pie.

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