Billy Blue Sky

By John Koehler

Billy Blue Sky is the story of a 10-year-old boy named Billy Pearlman, nicknamed Billy Blue Sky by his mother, Linda. Billy is smart, charming and intuitive beyond his years. He also happens to have Down syndrome. After open heart surgery, Billy seems to possess a new power that has profound effects on other people, changing their lives complete

• Language: English
• Publisher: Koehler Studios, Inc.
• Release date: Oct 1, 2012
• ISBN: 9781938467325

John Koehler

John Koehler is an award-winning designer, entrepreneur, ministry volunteer, and author of five books. He served as director of Young Life Capernaum in Hampton Roads, a ministry that serves kids with disabilities. John received international acclaim in 1991 as Boomerang World Championship in Perth, Australia. He was also a member of the Foster's Boomerang 2000 Team, a touring troop that taught major league football and baseball athletes, and others, the gospel of boomerangs. In 2005, John published his first book, Bipolar by Koehler, about living with bipolar syndrome. Since then, he has given many talks to help people understand or survive the illness. In 2007, Koehler published Benjamin: the Road to Capernaum, a novel based on a crippled man in the Bible who was healed by a famous Jewish rabbi. His third book is My Inflatable Heart, a series of short stories about Capernaum and life recollections. John's latest book, The Case of the Russian Maids, the first of three murder mysteries that take place in Virginia Beach, is part of the Beach Murder Mysteries collection.

Book preview

Chapter 1

LINDA

Look, Mom, Billy said, excitedly pointing out the window. Blue sky outside. He touched his chest and said, Billy Blue Sky inside.

He laughed, then grimaced as the tape holding the EKG leads pulled against his chest. Owee.

My parents and I waited with Billy in his room at Riverview Hospital, a local children's hospital here in Virginia Beach. Summer vacation had just begun, so Billy's friend Jerome was there too. He and Billy were inseparable, the Two Detectives as they liked to call themselves. They had been best buddies since the first grade and lucky for us, Jerome lived within walking distance. So, we saw a lot of him and his family.

The hospital makes the visit as fun as possible, with silly cartoon creatures on the wall, cartoon patient gowns, and cartoons on the TV. Practically a Disney hospital! Jerome and Billy had already picked out their characters and were goofing full time. Each room had a pullout couch for parents to sleep over and plenty of extra seating to create a more casual setting, unlike a typical hospital.

But you can only cover up so much. Billy was about to be wheeled into an OR for open-heart surgery to correct a ventricular septal defect; a fancy name for a hole in his heart. Doctors call it VSD. It is a common surgery for kids with Down syndrome, and many of his friends bore the tell-tale vertical scars on their chests. But even though he was about to have his chest cracked open, Billy was cracking jokes.

Hey, Jerome, he said, I'm gonna have scars just like Frankenstein. Jerome put his arms out and started walking around like Frankenstein, bumping into things. He walked up to me and acted like he was going to eat my head. Billy burst with laughter as he and Jerome high-fived each other.

Very funny, wise guys, I said. Your doctors are going to stop by soon, Billy. What are you going to tell them?

They are awesome!

What else?

Be careful.

We laughed, but Gamma broke down and sobbed. Billy doesn't like to see people cry, especially his Gamma. So, he motioned her over to the chair beside his bed. Jerome watched cartoons with my dad, oblivious to the drama playing out beside them.

Billy brightened his Gamma's mood doing what he always does, using simple honesty. He had done this since he was a baby. My mom was sixty-five, and Billy was only ten, yet he was the adult in that moment. He was the one going under the knife yet he was unafraid, ministering to the needs of his favorite Gamma. That was Billy.

***

I looked at Billy as he talked with his Gamma and Gampa and I thought about all the times I had pulled out photos of him to share with other parents. They all thought their child was the most beautiful human on the planet. We would croon over each child's photo, making sounds of pleasure. The sounds would change when they looked at Billy. The sounds of pity came unbidden. They looked at Billy and saw the tell-tale stigmatic marks of Down syndrome; the shortened body, small hands and feet, a narrow, deep-set cast to his eyes. In person, they would hear his slight speech impediment. They saw and heard imperfection, and so they pitied me for having to cope with such a burden. But, to me, Billy was perfect in every way, especially when you added his spirit into the mix—a glow that does not always convey from still photos.

Billy has some of his father's looks, and mine too. He has my blond hair, though mine needs a little help from a bottle these days. He has my lips, which according to some guys I know, are show stoppers. And best of all he has my eyes, a blue-green mix with yellow flecks around the pupil. Amazing eyes. I tell him he stole my eyes and he says they were a gift. He's right, of course.

My cell phone rang and the caller ID said, Steve. Billy's dad. My ex.

Hello, Steve, I answered flatly.

Daddy! yelled Billy, reaching for the phone. I dutifully handed over the phone and Billy enjoyed a conversation with his dad. It was so sweet watching him talk, his face animated and joyful. No question he loved his dad, and that was why Steve was allowed to keep coming.

When Steve decided to leave for good on Billy's first birthday, we worked out a mutually agreeable arrangement. He gave me the house, and made the house payments, in return for no future alimony or child-support payments. He kept the right to see Billy once a month for a full day. While I did want Billy to stay connected with the father he loved, I wondered why Steve bothered.

I had to admit, Steve had been pretty good about taking Billy around to fun places, and he seemed to have developed a better tolerance of Billy's disability. Even so, he missed some months. I didn't mind, but it would put Billy in a blue mood for a day. He loved his daddy and looked forward to their time together.

I put up with it for Billy's sake, not Steve's. Any man who would walk out on his wife and son over a disability didn't rate very high in my book. I had lost trust in him and he knew it. That's why he accepted the arrangement and didn't push for more. He didn't want the responsibility of caring for Billy or being a real dad to him. To Steve, being a dad meant giving Billy his blood and his name, nothing more.

I often wonder why I married a loser like Steve. I must have been naïve. We met at Virginia Tech. He was a junior and I was a lowly freshman. He was so handsome. Honestly, he took my breath away. He was studying to be an engineer, but he seemed a lot more fun than the other stiffs in that curriculum.

Steve always said he had targeted me for acquisition when he first laid eyes on me. The key word in that case being laid. I confess, I enjoyed being his target. We would take canoe trips on the New River and dance at Shadows, the only bar with live music in Blacksburg. He courted me with a passion that was, at times, overwhelming. Did I mention he was gorgeous?

Steve graduated and took a job in the DC area working for a government contractor. We both dated other people for a while, but we stayed in touch. By the time I was ready to graduate, we had agreed that I would move in with him and look for a job in Washington. Two years later we were married and moved to Virginia Beach so Steve could work for a Navy contractor. It was a glorious time. A year later Billy along came and I was the happiest woman ever.

Soon, my joy turned to ash.

Steve seemed to resent the bond between Billy and me. I think he resented it because he just could not relax with Billy. He held Billy like a bag of groceries. Billy's disabilities were obvious early and Steve reacted by spending less time at home and less time with us when he was home. In the end he couldn't get comfortable with Billy's disabilities. Perhaps it hurt his ego. I don't know, and he never said. The more I asked him about it, the more he resented me. Whatever the case, Billy was the innocent wedge that separated us.

In the end, Steve failed my ultimate test to determine whether someone was a good person. The Billy Test. If someone reacted favorably to Billy, even if they were uncomfortable and honest about it, then they would get the thumbs up. Steve was not only uncomfortable around his son, he was embarrassed by him. This infuriated me. Think wounded saber-toothed tigress!

It was painful for me to discover that, after eight years, the man I thought I knew had a hole in his character a mile wide. When his old firm invited him back to Washington, Steve couldn't pack his things fast enough. He pretended like the job was a promotion, but I found out later the position paid less money. Suddenly, it was just Billy and me.

***

Billy hung up with his dad just as Dr. Marty walked in with a younger doctor, introducing him as Dr. Jim. The new doc was about my age and very handsome. He had big, beautiful puppy eyes, perfect for kids I guessed, and not so bad for single moms either. Thick curly hair, the kind you'd see on a Greek statue, and a matching goatee. He was tall, kind of lanky, and had an athletic swagger about him. I noticed he wasn't wearing a wedding band. After nine years of pushing men away, I was surprised by the thrill I felt when I shook hands and looked into his eyes. And a little guilty that I was attracted to a guy while my son was about to have open-heart surgery.

Hi, Dr. Marty! said Billy, patting the bed. Come sit with me.

Dr. Marty sat beside Billy and gave him a stern look. What's all the laughing going on around here, young man?

I'm telling jokes ‘cause Gamma's sad.

So, you're a comedian? Maybe after your surgery you could tell some of the other kids here at the hospital some jokes. Think you'd want to do that, Billy Blue Sky?

Is the Pope Catholic?

Everyone laughed, but Mom elbowed Dad in the ribs, because Billy had picked the expression up from Gampa, one of many. Dr. Marty motioned to the other doctor. Billy, this is Dr. Jim. He's a cardiologist. Bet you don't know what that means.

Bet I do! He's a heart doctor. Billy pushed Dr. Marty off the bed and patted it again, waving for Dr. Jim to sit. He did and Billy took his hand and held it.

Hello, Dr. Jim. I'm Billy Blue Sky. He leaned forward and looked closely into Dr. Jim's eyes. What's your puppy's name?

Dr. Jim looked surprised and flustered, and glanced over at Marty and me for support. My parents and I laughed. This wasn't the first time that Billy had intuited things about people in unusual ways. Some might say Billy had good guesses or luck, and others might say he was psychic. I didn't really know, but after ten years I was used to it, putting it down as just another Billy thing.

We just got a lab puppy for my daughter's fourteenth birthday, said Dr. Jim to Billy. How did you know that?

I saw her in your heart.

A certain silence filled the room. Mom and I called it Billy Time, when things slowed down and took on another dimension. Mom called it God stuff, but I just called it Billy.

Dr. Jim stood, attempting to recover his professional bearing. He consulted his chart, then said, Billy, when I see you in the operating room, we're going to have you breathe some special air that will put you to sleep.

What will Billy dream?

Dr. Jim smiled. Maybe you'll dream about my puppy. You can take her for a walk. Her name is Velvet because she feels soft, like velvet.

Billy smiled and turned to me for the okay. I gave him the nod, so he said, Billy will walk Velvet.

Billy hooked Dr. Jim's pinky with his. Pinky swear!

What am I swearing, Billy?

That you wake Billy up!

***

If you want to know the way to break a woman's heart, cut open the chest of her son and perform surgery. Those four hours were a red-hot poker on my soul and I had to remind myself to breathe. It was awful. Everybody kept a close eye on everybody else and we passed each minute. Billy, on the other hand, got to dream the entire time, and it turns out he did take Dr. Jim's puppy for a walk.

Billy was unconscious and in recovery for more hours than I can remember. He had drain tubes coming from his chest and was breathing with a ventilator. Day faded into night as the hours passed. I stared at his beautiful face, waiting to see his eyes glow and his mouth smile.

The nurses who checked on him kept reassuring me that Billy's vitals were stable. The doctors told us the surgery went well. I believed them, but I needed to hear my child before I was convinced.

Finally, Billy awoke, mouthing some words in a groggy, hushed tone.

Can we get a puppy, Mom? Like Velvet?

Then he grimaced as the pain hit him. His hands flew to his chest and he cried, Owww! I took his hands and soothed him while he whimpered. A young nurse walked in, saw that Billy was awake and asked how he felt.

It hurts, here, Billy said motioning to his chest.

Billy, my name is Nurse Bonnie. I'm going to make the pain go away. But it will make you really sleepy.

The nurse gave me a reassuring smile, knowing I could use the rest too.

I dreamed about Velvet, said Billy to no one, lying in bed and staring into space.

Bonnie hung the bag of medication and started it dripping into Billy's IV. Soon he relaxed, his breathing slowed and his eyes grew heavy. He drifted off to sleep with a small smile on his face, while I leaned on my mother's shoulder.

Later, Dr. Jim came in to see how Billy was doing.

Most kids, Dr. Jim told me, do fine with the mixture of anesthesia we use, but I like to watch out for any unusual symptoms. Everything looks good for Billy. The surgery was perfect, if I do say so myself.

I'd like to take Billy over to the oncology floor in a day or two, he said. Marty's idea. We think it will be good for him and could be really good for the kids over there to get infected with his natural humor. Some of them are terminal. Do you think Billy would be okay with that? He gave a sad smile. "Are you okay with that?"

I think that's fine, I replied. Billy and I have talked about dying before. He knows more about it then I do, that's for sure.

I don't understand.

Billy is an exceptional child, Dr. Jim.

Call me Jim.

Oh, okay. I'm Linda. I put out my hand and we shook. Nice to meet you, again! With spiritual stuff and things from the Bible, Billy's really smart. Almost savant smart.

Did you teach him?

No. Well…yes. Maybe a little. I tried to think back on how Billy learned those things. I remembered him asking questions from books he was reading, and discussions about what they meant. He always had great questions, especially about Bible stuff. So, he would keep digging, and often my mom and dad would help him too.

All I really did was make books available, including the Bible. He wanted to know what it was and I told him it was a book about God. That was about two years ago.

So, he's been reading the Bible for two years?

Yes. And he talks to God too. I guess you could call it prayer. It's really sweet. He calls God his Sky Daddy.

What happened to his real daddy, if I may ask?

He left on Billy's first birthday. He didn't want to be the full-time dad of a kid with Down syndrome. Nice guy, huh?

No, he's not a nice guy.

What about you, Doc? No ring. No time for social life?

His face softened with sadness, and he stared past me with a distant expression. I wanted to stroke his face, but instead said, I'm sorry. I knew something bad had happened, and mentally kicked myself for being impulsive about things of the heart. Billy and I were alike in that way.

My wife died five years ago. Breast cancer. I never wanted to be with anyone since then. Never felt right for me. I noticed the use of the past tense wanted.

Me neither, I replied. But anything's possible.

He stared openly at me for a moment, then visibly collected himself. I'll check on Billy again the day after tomorrow. See if he's up to taking that trip down to visit the kids. See you later, Linda.

I watched him walk out of the room and realized that my heart was racing.

Chapter 2

BILLY

Iliked being in the hospital with Mom and Gamma and Gampa. And my best friend, Jerome. I wasn't scared, but Gamma was. She was okay after I gave her a hug and we talked. If I close my eyes I can see that day and the people. My family. The doctors and nurses. That's pretty cool to see things with my eyes closed. Almost like magic. But everyone can do it, so maybe it's not really magic. Or maybe everyone can do some magic? I