Posts tagged ‘rubella syndrom’

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/

Dinosaurs, Diet Coke, and Driving ‘Round in Circles

Yesterday was my brother’s birthday, so as treat, I took him on a trip to the Museum of Science.  My brother turned 51 years old, (while I am not admitting my age, I can’t deny that I am older.)  For those new to my blog, Curtis is legally blind, profoundly deaf, and severely developmentally delayed.  He can also be a joy to be around!  He is fun loving and enjoys just about anything.

My son Angel came with me on this adventure.  I picked Curtis up in the afternoon and he was so excited about the trip that he actually came dancing out of his group home, wearing a non-stop grin that was contagious.  We drove to suburban area of the city where the museum is with the plan to take the Metro into the city the next morning.  Before we went to the hotel, we stopped at a mall for dinner. Curtis’ LOVES malls, especially the food court, where we all had our choice for dinner.  After eating, Curtis wanted to walk around the mall independently.  I gave him $20 to spend and agreed we could meet back at the food court in an hour.  Off he happily went, thinking he was alone.  All the while, Angel played “spy” and followed him.  He thought he was on his own, and we didn’t want to spoil that illusion.  Off he went to, predictably, get a diet coke.  He pointed to the diet coke sign and handed the cashier his $20 bill.  She handed him his soda and his change, which he attempted to put in his pocket, (with half of it falling out on the floor.)  As he turned away to sit at a table, Angel scooped down and picked up his change to give back to him later.  Angel sat a few tables away so he could keep an eye on Curtis.  After finishing his soda, Curtis was up and moving…with his nephew as a tailgater.  Curtis then started his quest to fine every single elevator in the mall.  He knows that stores like Macy’s, JC Penney’s, Sears. and Lord & Taylor have elevators and he has the nose to sniff them all out.  In his mind, the elevators are transporters, taking him to level of the space station on Star Trek.  He has a mission to complete, to find every elevator in the mall, and after he completes his mission he can get another diet coke.

After the mall, we went to the hotel and checked in.  Curtis was so excited that he didn’t sleep well.  Every hour, ON the hour, he woke me up to see if it is time to to get up. (He learned this hourly ritual from my mother, who used to beg him to let her sleep “just one more hour”.)  I awoke at 7:30 to see him wide awake in the next bed, waiting for 8:00 am so he could wake me up and ask me if it is time to get up!  I moved to get out of bed and my movement announced that it is time to get up.  Curtis jumped up happily. He had all of his clothes on for the day. (He must have dressed during the night.)

After a quick breakfast of yogurt and bananas that I had brought, we drove the car to the parking garage for the Metro.  This happens to be his favorite parking garage in the whole world:  it has a spiral driveway all the way to the top.  As we drove, we sang and sway back and forth.  “Around and around and around and around” all the way to the top floor.  We then made our way onto the subway, which he also loves.  He asked me where we were going, as I had kept it a surprise.  Having recently lost his hearing completely, he does not yet understand that he cannot hear, so the conversation goes something like this:

C: “Where are we going?”

Me: “To see the dinosaurs.’

C:  “The aquarium?”

Me:  “No, the DINOSAURS!”

C:  “The movies?”

ME:  “NO THE DINOSAURS!!!!”

C:  “You’re taking me back home?” he said as his body melted in disappointment.

ME:  “NO!!!  WE ARE GOING TO SEE THE DINOSAURS!!!”

Realizing I was not going to get anywhere with telling him, I grabbed a piece of paper and drew a large picture of what I think was a pretty good imitation of a dinosaur.  “Oh!” he said happily, “we’re going to see Fred Flintstone?”  I sigh and shook my head yes…

I am the type of person who can sleep anywhere, any time.  Exhausted after being woken up all night long, I curled out across 3 seats in the back of the subway car, and Angel and Curtis sat across from me. It is about an hour’s ride into the city and I asked Angel to wake me up when we got closer to the city and it started to get crowded.  I was sure people would NOT appreciate me taking up 3 seats.  I fell fast asleep.  I woke up only when Angel was tugging on my sleeve because we were at our stop.  I was MORTIFIED!  I looked like a homeless person! I have “bed head” and drool coming down the side of my mouth. The subway car is full of people, many people standing up.  “I told you to WAKE me,” I reprimanded him.  At least it sounded like I was scolding him for the sake of the people standing up.  Secretly, I was grateful I was able to get an hour’s sleep in.

We had to change from the Red Line to the Green Line.  The seats in the car we entered were completely full, so Angel and I each grabbed a vertical pole and Curtis grabbed the horizontal pole above him and was kind of hanging like a monkey.  Angel and I put our arms around his waist to steady him.  The car swayed back and forth and we swayed back and forth.  Curtis thought our fingers were tickling him on purpose, so he started to laugh.  Angel and I started to laugh, and pretty soon the 3 of us were laughing hysterically.  Several of the passengers offered their seats as they could tell our predicament was precarious.  “No, thank you,” I said, “We are the adventuresome type.”

When we get to the museum, Angel, true to his nature, went to check out the museum store.  (One of his female “peeps” is a shopaholic who believes in the “shop til you drop” motto.) Curtis, true to HIS nature, wanted to eat first.   It’s not so much that he wanted to eat as he wanted to get a soda.  He is obsessed with soda.  We went through the cafeteria line and he picked out macaroni and cheese and I picked out a chicken caesar salad.  With him hanging on my arm, we payed and I looked for a seat. It was very very crowded. I was trying to do sighted guide technique with him on one arm, carrying the tray with the other, and steering him towards the one empty table I saw all the way across the room.  He spotted the sign for Diet Coke.  He wouldn’t move, just pointed at the sign.  I tried to tell him that first we needed to get a seat, that I couldn’t possibly stop for soda with a tray full of food and him on my arm, but of course he couldn’t hear me.  He continues to point at the Diet Coke sign like ET pointed to home.  He kept trying to drag me closer to the soda machine and I pulled him towards the table. The tray of food was unbalanced, and I was afraid our $35 lunch was going to drop on the floor, or, worst yet, on top of the head of one of the many children in strollers nearby. Finally I won the tug of war and we reached the empty table where I plopped the tray down, grabbed the soda cups and headed with him back in the direction of his  beloved soda. His face immediately burst into a smile as he realized what we were doing.   He was a happy camper!

We spent the rest of the afternoon exploring the museum.  The dinosaurs were  big enough for him to see, and he really enjoyed them, although he did keep asking where Fred Flintstone was.  (The Flintstones were our favorite cartoon when we were growing up.  Every Friday night.  Channel 6.  8:00 pm.)  When we finished with the exhibits, Curtis bought another soda “for the ride home” .  He perked up again when we got to the parking garage and had to go “around and around and around and around” in the car to get out.

Bringing him back to the group home was uneventful.  When the staff asked how his weekend was, he answered “GREAT!  I had diet coke and we got to drive around and around in circles.”  He didn’t even mention the hotel or the mall or the subway or the dinosaurs.  The next time I take him, I think I’ll save the money and just park at the Metro parking garage and buy him all the diet cokes he wants.  It would sure save me money, (and anyone who has read my blog before KNOWS that I like to save money!)

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