Billy Blue Sky
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“This touching story of a boy and spirit requires a box of tissues, a heart open to faith, the belief that miracles are always around us, and the simple concept that all of us walk this world with grace. A story of what one human can do for another reminds me of what is simple and good….ahhh to be 10 years old and wide open again to it all!”
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, which can cause certain types of heart abnormalities.
After open heart surgery, Billy seems to possess a new power that has profound effects on other people, changing their lives completely.
Linda is not a religious person, but even she has a hard time understanding or explaining what is going on with her son. Soon their lives spin out of control. Billy attracts a following of people, many who do not have his best interests at heart, and are willing to do anything to obtain his gift.
This is a story of true love, and how a little boy can change hearts and the world. It is the story of evil forces who try to take what is not theirs, and about the mother who will give her all to save her son.
Billy Blue Sky launches in January of 2013
© Copyright 2011 by John Koehler
My name is Billy Blue Sky. That’s my nickname— everyone calls me that. My fancy name is William Lincoln Pearlman, but I only use that on important grownup papers. My mom gave me my nickname when I was little ‘cause I used to go outside and say, “Blue Sky! Blue Sky! Blue Sky!” I remember doing that. I still like to run around outside, especially when the sky is so blue, the way it gets sometimes right after a storm when its like that snap crackle pop cereal. But I don’t say, “Blue Sky!” anymore because I’m all grown up and grown ups have to be serious.
But I don’t mind if you call me Billy Blue Sky ‘cause that’s my name. You can’t ever run away from your name, even if you want to. It will follow you around just like a puppy who loves you and pretty soon you take it home and ask your Mom if you can keep it.
I want to tell you a story about what happened to me when I was a boy. When I was just 10-years-old. I’m almost twenty now. I’m a grownup man. What happened to me back then seems like a long time ago, but my Mom says it feels like yesterday. Gampa says it was just a few eye blinks ago, but I tried counting my eye blinks in an hour and it was more than a few. So I told Gampa he was full of prunes. He laughed. I don’t like prunes.
I’ve been called special all my life because I have Down syndrome. It makes me look funny and sound funny and walk funny. Yup, I’m a funny guy. You may not believe this but I’m glad God let me have Down syndrome ‘cause I get to help others who are like me, and people who are not like me. Being special is cool. And I’m really good at Special Olympics basketball and I got three gold medals this year. Maybe I should put pictures of them in this book.
The story I’m going to tell you really happened, but it may be hard for you to believe because some magic stuff happened. My Gamma calls it “God stuff.” Do you believe in God? I do. I always have. God made me look just like him. Some people don’t like the idea of God looking like a Down syndrome kid like me, but that makes me happy. God is so big he can look just like all of us. Now that is big!
When I was a boy I called God “Sky Daddy,” but now I just call him God or late at night in my bed when I’m all alone, I still call him Sky Daddy, but I don’t like to tell others because it sounds like baby talk. God doesn’t mind if we baby talk to him. He whispers back to me like baby talk and I like it. I know I’m a grown up man now, but I still like it.
You don’t have to believe in God to read my story, because God made you and me just the same and he loves us to the moon and back. That’s what my Gamma says, though I don’t know if God is on the moon ‘cause there’s no people up there.
Down syndrome was named after a doctor who discovered it. His name was Dr. Down. My Gampa likes to say “Get Down, Billy!” and then he dances around like a special needs man. Dr. Down found out that people like me are missing a chromosome, which is a tiny little thing inside of us we can’t even see without a super powerful microscope. I looked in one once and there were creepy things like baby crabs in there. I don’t like the idea of baby crabs living inside me but the doctor said there were T-rex white cells who beat up the crabs. I like having T-rex super heroes living inside me. That’s super cool!
When I was ten years old I got famous. Everybody knew my name. Lots of people all around wanted to see me and touch me and hear me. I liked it. But not all of it. Some of what happened made me sad. I wish people didn’t have to be mean. If everyone had Down syndrome I think they might be happier. I don’t know about that.
My Mom and Dad are going to help me with my story. Her name is Linda so when it says “Linda” that’s her talking, okay? His name is Steve. When it says Billy, then that’s me, Billy Blue Sky. We’re going to tell you my story together. My Mom didn’t want him to help write the book but I told her it was my book and she said I was right, it is my book. So even though we’re not together in real life, we will be together in my book. Totally cool!
If you want to read my story you have to believe in magic. I want you to pinky swear with me. That means you mean it. You don’t have to swear to God ‘cause my Gampa said God doesn’t like it when we swear at him.
Now put up your pinky. Good. Let’s hook our pinkies together. Great. Now close your eyes and wish I may and wish I might, I wish upon a star tonight I promise to believe whatever Billy says cause it is the truth, so help me God.
Because God will help you if you ask him to.
I hope you like my story.
“Look, Mom,” said Billy to me, 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 were waiting with Billy in his room at Riverview Hospital, a local children’s hospital here in Virginia Beach. They make the visit as fun as possible, with silly cartoon creatures on the wall, cartoon flavored patient gowns, and cartoons on the TV. Practically a Disney hospital! Each room had a pullout couch for parents to sleep over and plenty of extra seating to create a more casual setting—a little less like 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. It is a common surgery for kid’s with Down syndrome, and many of his friends bore the telltale vertical scars on their chests. But even though he was about to have his chest cracked open, Billy was cracking jokes.
“That’s right, wise guy,” I replied. “Billy Blue Sky is here, come to save the day. What are you going to tell the doctors?”
“They are awesome!”
I looked at Billy as he talked with his Gamma and Gampa and 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 telltale stigmatic marks of Down syndrome; the shortened body, small hands and feet, an Asian cast to his eyes. In person they would hear his slight speech impediment. They saw and heard imperfection and so they pitied me. But to me, Billy was perfect in every way, especially when you added his spirit into the mix—something that does not always convey from still photos.
Billy had some of his father’s good looks and mine as well. 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, whatever that means. 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 phone rang and the caller ID said, “Steve.” Billy’s dad, and my ex.
“Hello Steve,” I answered in a neutral voice.
“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 was 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 childcare payments. He kept the right to see Billy once a month for a full day. While I did want Billy to stay connected to the father he loved, I did wonder why Steve bothered.
Steve had been pretty good, I had to admit, 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. Plus the fact he didn’t want the responsibility of caring for Billy or of being a “real” dad to him. To Steve, being a Dad meant giving Billy his blood and his name, nothing more.
I often wonder how I was roped in to marrying a loser like Steve, but the truth is he didn’t seem to be one back in the day. Back then he seemed like everything I had ever wanted in a man. We met at Virginia Tech. He was a Junior and I was a lowly Freshman. He was handsome, charming and smart. He studied engineering to my psychology and politics. How I turned that into a career in private investigation is a question I’ve never really been sure of.
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 to enjoying being his target. He was charming, attentive and funny, all the things I liked in a man, after the initial question about how good looking he was were put to bed.
Steve graduated ahead of me, and took a job in the DC area, working for an electrical engineering company. We both dated other people for a while, but we kept our flame alive. So much so that by the time I was ready to graduate, we had agreed that I would move in with him and look for work up in DC. Two years later we were married, moved to Virginia Beach for the schools, to be closer to my parents, and because of a job Steve wanted. A year later along came Billy.
Billy changed everything between Steve and me.
Steve began to resent the bond that Billy and I had. In my mind it was just a normal maternal relationship between a mother and child, but I think Steve resented it because he just could not relax with Billy. He wanted to, but in the end he couldn’t get comfortable around Billy’s disabilities. Perhaps it hurt his ego. I don’t know, and he never said. 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 they 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. Not a good idea when you’re dealing with the mother of a special needs child. Think wounded saber-toothed tigress. Think pain!
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. So he drove away, back to Northern Virginia, and left me to deal with my very special kid. No longer our kid, just my kid. I was happy to have him out of the picture and hoped, as was often the case, that he would miss his monthly visits.
Shortly after Billy finished speaking with his dad, Dr. Marty walked in with a younger doctor, introducing him as Dr. Jim. The new doc was about my age and drop-dead gorgeous. 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.
“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 him, 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 12th 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. Anika named her Velvet because she feels soft, like velvet.”
Billy smiled and turned to me for the okay. I gave him the nod, so he turned back to Dr. Jim and 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!
* * *
We somehow made it through Billy’s agonizingly slow 4-hour surgery. He, on the other hand, got to dream the entire time, and it turns out he did take Dr. Jim’s puppy for a walk. We realized this as soon as he woke up in recovery.
“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 pretty young nurse walked in and Billy said, “Nurse Bonnie. Make the pain go away.”
“You bet we will, Billy. We’re going to give you some medicine that will make most of the pain go away. It will make you really sleepy.” She gave me a reassuring smile, knowing I could use the rest, too.
“I dreamed about Velvet,” said Billy to no one. He lay back in his bed and stared 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 say so myself.”
He looked at me with his big eyes, and we had one of those awkward moments when no one knew how to say the things they were thinking. We both could feel the mutual attraction. I felt sure he could see the flush I could feel on my face and neck. My heart was racing. I hadn’t felt that way since college. But he was the doctor and I was the patient’s mother, and we both knew it needed to stay that way. Yet…
“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 and often I didn’t have a definitive answer for him about Bible stuff. So he would keep digging, and often my Mom and Dad would help him too.
“But really all I 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 and became Dr. Jim again, the professional. “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.