Monkeys and the Chair: Josiah's Story

By Renee Oppenheim Peacock

Once in a lifetime, you may be fortunate enough to meet a child who will change your view of the world forever. Josiah was that kind of a child. Born with severe cerebral palsy and numerous health challenges, he was blessed with an infectious joy and the gift of encouraging others. His faith in God and his passion to serve far surpassed his limited abilities. To know him was to be inspired. His life was cut short by his frailty, but his legacy remains.

• Language: English
• Publisher: WestBow Press
• Release date: Feb 12, 2013
• ISBN: 9781449784805

Renee Oppenheim Peacock

Renee Peacock has an extensive background in facing challenges as a medical assistant, a developmental disabilities technician, a clinical research coordinator for pharmaceutical trials, a foster/adopt mom, and a navy wife. In addition to raising their two adult children, she and her husband of thirty years have adopted four children (two of whom have special needs). The Peacock family have lived all over the world and currently reside in Grand Junction, Colorado. In addition to writing, weightlifting, and yoga, Renee enjoys dancing hula, playing in the dirt, and singing on the worship team at Fellowship Church.

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Copyright © 2013 Renee Oppenheim Peacock.

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ISBN: 978-1-4497-8481-2 (sc)

ISBN: 978-1-4497-8480-5 (e)

ISBN: 978-1-4497-8482-9 (hc)

Library of Congress Control Number: 2013902584

WestBow Press rev. date:2/13/2013

Contents

Introduction

No Rest for the Wicked

Fever

Panic

Institutional Life

Visiting Dignitaries

Childhood

Navy Housing

Kara

Math Just Sucks

If I Only Had a Brain

Kairos

Homecoming

Exchange

Double Trouble

The Doctor Dilemma

Overwhelmed Anyone?

Foster Care

Hawaiian Karaoke

Hula Baby

Careers

Concussion

Extreme Potty Breaks

Jacob

Prideful Dog

Brightening the Palette

Dissing Disabilities

The Nose

T-Man

Puberty

Broncos

The Athlete

Loving Them Horses

The Great Outdoors

Sue

Drunken Horses

Not a Good Idea

Not Well

Kentucky

AMPED

Round Three

Battle Ready

Kelsey

Not Always the Innocent

Therapy

House Frau

Just Leave It to the Boys

Vertigo

Gwen

Coffee Overflow

Skunk

The Power of Prayer

Nicole

Family Dynamics

Three Days

Here Comes da Bus

The Funeral

Let Me Burn

In Your Heart

Grief

Out of My Skin

Howler Monkeys

Worry Wart

Morning Ritual

Visions

Cookie Monster

Garden

Mike

Future Plans

Cheerleaders Extraordinaire

Gravesite

Impact

Grief Walks

Honi

Fifteen

Memory

Stage Meltdown

Acknowledgments

About the Author

For my children. Some I gave birth to,

others were born to my heart.

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Introduction

About a year ago I began to jot down little thoughts and ideas in the wee hours of the morning. The conversations I had with my children were just so funny and memorable that I did not want to forget a thing.

With our hectic extended family it was like living in a zoo. With ten people comprised of four generations our life was noisy, boisterous, and fun. But it was often hard to explain the ins and outs of our household. It was also a time when loved ones were coming and going like the seasons. Illness, loss, heartbreak, and joy. It was therapeutic and necessary to capture each milestone.

We all knew that Josiah was a child who needed capturing. He breathed life into everyone around him. He inspired. He loved. He lived with an abandon that I had never seen before despite his pain. But it was there, in the middle of his struggles that he truly shined as a believer of Christ and an amazing young man.

His story had to be told. We are all honored to have been a part of it.

No Rest for the Wicked

It is one o’clock in the morning, again. From the monitor, I hear his demanding voice for the umpteenth time. He wants to be rolled over, rearranged. He is too hot, too cold. He tosses out a litany of requests at a time when the pillow is calling my name.

He is far from being a baby at age fourteen, but his cerebral palsy is so extreme that he is unable to rearrange himself or roll over when he needs to. Without us to help, he cannot eat, drink, or clean himself. He is restricted to his wheelchair and dependent on us for his every need.

Over the past five months, he has been very ill. There have been infections, kidney failure, a collapsed lung, two fractures, and weight loss on a frame that has always been too gaunt. To make matters worse, he now has an ulnar nerve impingement, and his contractures caused an elbow dislocation.

He has been in and out of the hospital so many times that each visit flows into the next, and we have lost all concept of time. He does not sleep well, so he struggles with an anxiety that borders on delusional. He is on a ton of medications. Most of their names I cannot even pronounce. They really don’t seem to help. The young teen we love and admire is not the same child who now is calling me to his bedside.

Joe has always been identified by his amazing smile. He is known for his wit and personality. If you are in need of encouragement or a laugh, he is your man. Now we are lucky to see him smile at all.

These days, he teeters on that fine line between sedated and agitated. He screams in pain and sweats profusely, as anxiety overtakes him. His limbs flail, and his eyes twitch. Every bath and every tube feeding is a two-man job. It’s an adventure in alligator wrestling.

Now he is wailing. He is demanding to be placed in his chair. He thinks he will be more comfortable there. I know that this is not true. As soon as I get him settled in one position, he will want another. He continues to yell, this time using words that are incoherent.

Gone are the clever one-liners, the sassy remarks, and the glib insights. His face is sunken. The light is gone from his eyes. I miss seeing him smile. I miss his musical laughter.

Most of all, I miss my son.

Fever

104, 105, 107 … Oh, man. My son is turning into a solar flare!

Ever since the surgery to replace his baclofen pump, we have been in battle mode. Fighting an infection. Attacking a PICC line. Forging ahead with antibiotics and an arsenal of drugs. Rallying against the pain and anxiety. Pushing calories, even when his body rejects them. We have been using every weapon and plan of attack we can muster. Now we have added dangerously high fevers to the mix. I fear we are not going to win this war.

We ended up making a frantic drive through the Rocky Mountains at two in the morning. The local doctors shook their heads and insisted that we head to the children’s hospital, which was more versed in complicated cases.

Pain became constant. One afternoon I sat with him on my lap for five hours, literally trying to untangle his arms and legs. He sweated so profusely that we were both hotter than Hades. I had to call in reinforcements. Meds were altered and changed, specialists were consulted, and labs were drawn. Still there were no answers.

Then the fevers came on in a range that should not be possible: 106, 107. I checked and rechecked the numbers. Medical professionals provided cold washcloths, Motrin, and Tylenol round the clock. We spent four sleepless nights camping out in the emergency room. Each time labs were drawn, the fevers were brought down to low grade, and we were sent home. Hours later, the fever returned.

One morning he awoke with red streaking and inflammation. His pump was definitely infected, and the blood cultures finally confirmed our suspicions. He was airlifted to Denver for emergency surgery.

You would think taking out the pump would do the trick, but within two days, he was in the pediatric ICU, struggling to survive. His body was having major withdrawals from his baclofen; the infection had gone viral, so he had to be severely sedated to help him handle the pain. Subsequently, his lungs filled with fluid, his kidneys started to shut down, and my boy was in a comatose state for several weeks.

Looking at my son in this condition was hell. He was attached to more machines than I had ever seen before. The IV bags were so numerous that I could not even imagine keeping track of them. He had a catheter. He was intubated. A PICC line was placed in his leg, and he had bruises from lab draws and sticky areas from adhesive tape. An EKG was monitoring his heart. Constant blips and bleeps sounded like a cadence, and the nurses hovered close by.

I tried to keep a stiff upper lip, but I found myself crying on most days. I took breaks to get fresh air and an occasional sandwich. With him sleeping constantly, I had to get away and talk to God. It was a very scary time.

Just when I thought I needed to prepare for the end of his life, he started to get better. I asked his doctors if we were losing him. They were hopeful, and his labs began to improve. I wanted to see those eyes of his open without the dilation of drugs, and I longed to hear his little voice again. I missed my child.

One morning, I came into his room at six. The sun was not yet up, and the room was eerily quiet. Even though the doctors’ reports were encouraging, I felt so afraid. I looked at my boy, who was so helpless and fragile, and I missed his voice, his smile, and his crazy personality. What I saw before me was a shell of what he once had been. He had lost so much weight that his bones protruded, and his skin was pale and waxy. I flew into an absolute panic.

Then I heard it. A still, small voice. It was a little louder than a whisper, and it was telling me, Relax. He is healing.

I did not need to be told twice.

Panic

Do not let your hearts be troubled.

Trust in God, trust also in me.

—John 14:1

When your kid is really sick and you have been trying to hold it together, you will fail and fail miserably.

One night I was tired, impatient, and bordering on hysterical. I spent hours trying to get Joe comfortable, but nothing worked. He cried in pain. I cried in frustration. I actually yelled at him for not going to sleep. Like that really helped!

The same nurse had watched Josiah for several nights in a row. She had also witnessed my descent into crazy town. Go home; get some rest, she kept telling me. I honestly thought there was a written law about leaving a child alone. The unwritten law of being a good mommy held more weight than any shred of common sense ever could. Leaving my sick son would have been in contrast to all things Mommy.

Knowing my mind was not in a good place, she reassured me that I needed a break. I felt like I had been given the key to release myself from prison. I grabbed my purse and ran for the door, as if the offer would be rescinded any second.

I cried all the way home. What was I doing? What if Joe needed me? What if something happened? Then I did the unthinkable. I stopped thinking of all the things that could go wrong. I took a hot shower and poured myself into bed. I slept for four solid hours.

When I got back to the hospital, I felt like a different person. I could finish sentences. I was not crying. I had patience with my son again. It was an epiphany moment for me.

There were so many days when I would revert to crazy caretaker woman. That alternate part of my personality was always lingering close by, waiting for an opportunity to resurface.

One afternoon, a former teacher of Josiah’s, Anna, came to visit him. As soon as she laid eyes on Josiah, she could not hide her concern. He was having a very rough day and just could not get comfortable. He was moaning in pain and yelling out for help. My shoulders were all bound up, and my hands had gone numb. I just stood there and cried. Words eluded me.

She immediately took over and replaced my hands with her own. Why don’t you go for some coffee? she suggested. I was so fried that I could not move. I knew the trip to the coffee shop would require me to be in contact with other human beings, and I was a mess. My face was red, and my eyes were puffy. All I could say was, This is just so hard. She understood. She had seen Josiah when he was at his best. Now she was seeing him at his worst.

She remained there for as long as her schedule would allow. When she had to leave, she apologized. Although I couldn’t express it at the time, her presence was like a godsend for me. It was a brief moment of reprieve in a very painful day. She knew and loved Josiah. That was all the help and encouragement I needed.

Sue, Joe’s aide, was a frequent visitor at the hospital. She made sure to bring a picture of a young girl Joe had a crush on. He did not blush. He did not laugh and deny he liked her. He didn’t even seem to notice.

I made an appointment to see my doctor. My stress and depression were reaching dangerous levels. I could not afford to be out of commission for even a second. Warrior Momma had to be in full battle mode for this one, and my armor needed some serious polishing.

As I talked to my doctor, I felt like a guest on The Jerry Springer Show. My son was ill. My mother-in-law was in intensive care, my husband was unemployed, and I was beginning to realize that I was moments away from the psych ward myself. The doctor prescribed Zoloft.

Ordinarily I am not one who believes in pharmacological intervention. Other than supplements and an occasional Motrin, I avoid most drugs. On any given day, a little time outside to pray and some exercise is all I need to come out of a funk. But taking breaks was not really an option, and I just could not pull out of this without help. It turned out to be a good thing. Maybe it was the placebo effect, maybe not. Whatever the case, it took the edge off of my downward descent. Thank you, God!

One Saturday my husband told me to go home so he could spend the day with our son. I took off and stayed away until after dinner. Jan and Joe hung out, and I got a nap, an honest-to-goodness nap. I ate food that was not prepared in the cafeteria. I went outside and played in the dirt. And I knew, with every ounce of my being, that Jan was the most amazing husband a woman could ask for.

With all of the stress and worry, he gave his time and love to Josiah and to me with that simple act of kindness. I felt incredibly blessed and loved.

Institutional Life

If anyone serves, he should do it with the strength God provides, so that in all things God may be praised through Jesus Christ.

—1 Peter 2:14

As a small child, I was petrified of dwarfs. I have no idea why. I just remember vividly walking through the aisles of a Sav-On and seeing a little lady looking for a greeting card. I stopped in my tracks, grabbed my mother’s hand like a vice, and announced to the world. Mom, she is going to eat me!

Maybe it was her size combined with the fairy tales of trolls and Rumpelstiltskin that did me in. When I was growing up, we talked about all people being equal, but I was not exposed much to anyone who was different.

As a preteen, we had a young man in my junior high who had Downs’s syndrome. Kids were cruel to Eugene. They kicked him as he walked by and made fun of him at every opportunity. I tried to be patient and kind to him, but it was hard with the pressure of my peers to really get to know him.

When I graduated high school, I did my stint as a waitress, taught aerobics, and bounced around a bit. When I got to Colorado, I got a job at a state home where I worked with developmentally disabled adults.

I had never really been in an institution before. The buildings were ancient, with drafty windows and old paint. The first dorm I worked on was massive and imposing. My boss was a cranky matron of a woman who insisted we make the clients’ beds with military precision. She seemed perpetually in a state of doom.

On my first month on the job, we had an overnight camping trip with the clients. They rented a large house near a lake. After getting the clients fed, showered, and tucked in for the night, I settled in to sleep on the kitchen floor with a very nice Mormon lady. I had no idea where the other six staff members were. A week later, I was summoned into the director’s office. Apparently the staff members had a private drunken bonfire that was so loud and boisterous that it drew the attention of the other campers and the police. The Mormon and I were the only ones who did not partake. This was a huge eye opener for me.

The clients were a hoot. There was Ricky, who was blind and had numerous medical issues. He was funny and had a sweet personality. His best friend was Bobby, who was a roly-poly guy who reminded me of a human Humpty Dumpty. We had nonverbal boys, boys who were restricted to wheelchairs, ambulatory blind clients, and some who just did not have a lot of cognitive abilities. It was a mixed plate of just about everything you could imagine.

Freddy was one of my favorites. He was a tiny imp of a thing with severe scoliosis. He would scoot his wheelchair backward and sit in the sun like a lizard until his skin was a deep brown. He was constantly giggling, and he lived to help, but more often than, not his help got him into some kind of trouble. He had been told that he was bad so often that he would repeat the mantra Bad Freddy over and over again. He was so mischievous that I pictured him as my own little leprechaun.

Then there was Randy. Randy had been perfectly normal until his teens, when he started having grand mal seizures. Over time the seizures did so much damage to this body that his family could not care for him. He was tall and lanky. One night I was helping him with his shower. To transfer him to the shower chair, I would drape his arms around my neck and pivot him. His head was so floppy that he would drape it on my shoulder like we were dancing. I told him that my boyfriend would be jealous if he saw this. Randy smiled but said nothing. The next night, a full twenty-four hours later, Randy finally spoke up and said, I won’t tell your boyfriend if you don’t.

I found that the staff members came from a background with some sort of disability. Some of the older staff had children they had cared for in their immediate family. They didn’t seem too happy or too patient. They seemed to just be doing the bare minimum and then sulking off to have their umpteenth cigarette of the day in silence. Back in those days, they did not restrict smoking on the dorms. They were allowed to light up in the staff break room, which amounted to no more than a small room with four chairs and no windows.

I ate my lunch with them, but it was not pleasant. On the days when I toughed it out, I would end up getting sick from the smoke inhalation. I finally wised up and started eating my lunch at a small table away from the smoking chimneys.

This proximity presented another problem. The clients were fed tasteless cafeteria fare. Some of the boys just never seemed to be full or satisfied with the quality or the amount of food they were given. By comparison, my meager portions of top ramen or leftovers seemed like a king’s feast to them. As soon as I sat down, the clients would roll and amble closer and closer, eying my food like starving dogs. If I shared with one person, it started a chain effect. I learned that I just had to say no and eat as quickly as I could wolf it down.

Terry was one of our teens. It was very hard to love this guy. He was very low functioning; he drooled constantly and was outfitted with mitts since he had a habit of stuffing his entire fist in his mouth. When he ate, he attacked food like an animal. When he finished his own, he would lunge across the table and grab anything he could get his hands on. Then, as if that wasn’t enough, he would regurgitate his food and eat it again. This habit was pretty disgusting to watch, and he had this stench of vomit that followed him no matter how often he was bathed. I tried and tried to give him hugs and go out of my way to love him, but I just couldn’t seem to get past the smell.

We had another teen on our dorm who would punch himself in the head over and over to the extent that he had actually dented his own skull. He was outfitted with a helmet and special arm braces to prevent him from causing further damage. He was born deaf and blind, and feeling pain was better to him than feeling nothing at all.

My mother came to visit from California, and I tried to bring her onto the dorms to show her where I worked. We drove through the grounds, and she saw some of the higher-functioning clients taking a walk. She refused to get out of the car. It dawned on me that not everyone can handle disabilities up close and personal.

Working with these boys really showed me a compassion and love for working through obstacles. I enjoyed seeing progress. I thrived on making the mundane enjoyable. These poor guys lived in a dorm on the grounds of an institution. I tried to make shower times a game. I wanted them to enjoy their meals. I gave them medications and tucked them in bed at night. I was young and idealistic enough to think that I was actually making a difference in the quality of their lives. It also got me thinking. What if one of my children had a disability? Would I be able to handle it?

After Jan and I got married, I continued to work at the state home through my first pregnancy. After reviewing the patients’ charts, I was fearful. Some of my boys were mentally retarded due to complications during pregnancy or a simple lack of oxygen at birth. Every night I prayed for the health of my unborn baby. I had daily reminders of what could happen if things went south.

Our son, Justin, was born with his umbilical cord tightly wrapped around his neck. He was purple, and his entrance into the world was not signified by a healthy cry. The doctors whisked him away before I realized what was going on. They were too