Posts tagged ‘adventure’

“God Don’t Make Junk”

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This used to be my mom’s favorite saying. She believed it all of her life, but never as much as she did after the birth of my brother, Curtis. When she was pregnant with him, she was unknowingly exposed to German Measles, thus affecting him with Rubella Syndrome.

Curtis was unfortunate to acquire all of the accompanying diagnosis; he had a severe hearing impairment, congenital heart disease, an intellectual disability, an odd head shape (like a smooshed pear,) a cleft lip and palate, autism and was legally blind with crossed eyes that wiggled back and forth. (Additionally, when he was a teen, he developed schizophrenia, but that’s for another story…)

Because I was only 4 when he was born, I thought he was the cutest thing in the world! He was my BROTHER, after all. I delighted in feeding him formula through an eye dropper, trying to quell his kitten like hunger cries. I loved to rock him in the rocking chair, all bundled up and warm. He was a delight to me!

Curtis’s life in our family was as amazing as mine. Loving, adventurous, interesting, and accepting. Anywhere we went, I would explain to quizzical stares that he was born like that and he might look different, but inside he was the same as everyone else. In fact, he had an amazing sense of humor and would laugh at anything! He loved to eat peaches and watch Sesame Street. As I extoled my brother’s virtues, I could see their stares soften with understanding and acceptance.

The “gawking” role was reversed when I was a parent, and this moment is etched into my mind. Francis and I were at the zoo. He must have been about four years old because I remember pushing his sister, Dinora, in a stroller. Nearing a pen of vastly ugly pigs snorting mud, Francis exclaimed, “Look, mom! One of the animals got out of the cage.” I looked over and saw a horrified mother with a toddler in a stroller. A disfigured toddler, with a gaping mouth like Curtis used to have. And the child was snorting bubbles and drool. Taken aback and horrified by what Francis said, I took his hand and we walked over to the stroller. I smiled at the mom and told her what beautiful eyes her child had! I asked her if it would be okay if we touched him, and Francis and I leaned over and gently rubbed the child’s chubby little hands, which opened and closed in excitement. “He really seems to be enjoying the zoo!” I said, as we parted, smiling knowing little smiles at each other.

I then took Francis aside and explained that God makes all types of children, and “God don’t make junk!” His observational comment was an innocent one, (especially because he is legally blind,) but it provided an opportunity for a valuable lesson.

Every mother wants to be proud of her child, and to have others share in her positive feelings. Every child is a joy! Imagine yourself in the mother of a disabled child’s shoes. Have empathy for that mom. Join in her admiration of her child, and maybe you will also internalize the concept that “God don’t make junk!”

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For more stories about Curtis’ childhood and our adventurous family, 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

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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