a child's mystery illness

“I have much more to say to you, more than you can now bear. But when He, the Spirit of truth comes, he will guide you into all truth.” John 16:12-13 NIV

 

My Son’s Medical Mystery

 

One month after my son, William’s sixteenth birthday, he lay in the pediatric intensive care unit, unconscious. The attending physician said his condition was grave.

“If you and your husband are praying people, I advise you to do so. He’ll likely not live through the night.”

My son’s medical mystery baffled the finest specialist in the Washington, D.C. area. It began when he was ten years old. Contracting a wicked case of the chicken pox, internally and externally, raging fevers thwarted his school attendance for the entire first month of fourth grade. My once healthy little boy who delighted in scholarly achievements, missed an average of fifty days of school due to debilitating symptoms. This continued annually for six years.

First, his chronic cough, sore throats, and fatigue were blamed on allergies. Yet allergy shots did little to combat his failing health. Antibiotics and steroids were routinely prescribed for chronic bronchitis and sinus infections. When his fair skin turned bronze, it was characterized as a drug-induced skin pigmentation.

 

A High Fever, Swollen Gland, and Enlarged Liver

 

At age twelve, a high fever, swollen glands, and an enlarged liver led to a diagnosis of mononucleosis even though a blood test was negative. At that point, I insisted on stopping his allergy injections, suspicious that something else was terribly wrong.

A violinist from age five, Billy or ‘B’ as we often called him, was accepted in the honors orchestra program in sixth grade. Mid-year, he had no choice but to quit when his fingertips became raw and bled constantly. Due to his absences in middle school, several teachers and the principal suggested counseling, believing he was faking illness. My husband, Jim, wondered if our son was falling into a pattern of laziness.

After my son was being ruthlessly bullied, we met with the principal of his middle school. Despite the bruises on B’s face and two witnesses seeing the perpetrators attack him, the principal actually grinned and said he looked like a target carrying his violin case in the hallway. His remedy to thwart Bill’s daily beatings was peer mediation. Most outrageous, he thought we should buy him a second violin; one for home and one for the music room. Livid, Jim and I felt the only way to keep him safe was to transfer him to a private school. Yet that expense became a source of contention in our marriage as Bill’s fatigue and vague symptoms increased his absences from school. Jim often asked, “So now we’re spending money to have him hang out at home?”

The responsibilities of managing my husband’s dental practice paled in comparison to the full time work oof dealing with unsympathetic teachers and administrators. Constant doctor’s appointments took my time away from the front desk, disrupting the business. Insurance issues resulted in hours on the telephone. I began to investigate B’s symptoms, even having our well water checked for bacteria.

 

Isolation, Frustration, and Cancellation

 

My husband’s and my social engagements were often cancelled due to B’s health issues. More heart-wrenching was witnessing my son’s isolation from his friends. He and his best friend since first grade stopped hanging out following one too many sleepovers being cut short by B’s illness. Participation in summer swim team went by the wayside. In sixth grade, his long-awaited trip to Space Camp in Cocoa Beach, FL left him bedridden for three out of five days, missing countless activities. As he worked doubly hard to earn badges in his Boy Scout troop, his hope of becoming an Eagle Scout became more unrealistic as multiple hikes and rafting trips were cut short by trips to the hospital for rehydration.

Our two older children, my step-kids, who lived with us found the attention their half-brother required frustrating. They began acting out.

Jim and I parented very differently. My husband, a man’s-man, had a ‘buck-up’ attitude, so B often struggled to fake an appearance of being healthy in front of his father in order not to disappoint him. Yet my son’s façade faded in my presence, so I was perceived as the overprotective mom, giving in to his desire to stay home.

We adjusted to our abnormal lives by setting our expectations low, rather than making plans that could be hindered. Instead, we stayed home, playing board games and watching movies. We we also entertained frequently. For me, it was emotionally easier to anticipate being available in a moment’s notice when B needed my help.

What a gift that Jim and Billy were avid readers. My husband did love the fact that B devoured books and enjoyed discussing them. That softened some of my husband’s mounting frustration over a son who rarely cut the grass to completion, showed no interest in learning how to change the oil in the car, and who simply never helped with any work requiring physical exertion.

 

Unbearable Post-Op Pain

 

At age thirteen, B’s tonsils were removed. As he recovered in post-op, his ENT found in the waiting room.

“In twenty-nine years, I have never removed such large tonsils and adenoids. He’ll likely feel better in no time.”

On the contrary, his post-operative pain was unbearable as he remained limp in his bed for three weeks. Dreadfully weak, the only way he could navigate the staircase to his bedroom was to scoot backwards on his rear end.

Rarely hungry and battling nausea, it was no wonder Billy was losing weight. When he did eat, he had a tendency to shake excessive volumes of salt on everything he ate, adding cause for concern. Jim often reprimanded him.

“No wonder you don’t feel well. Your eating habits are horrible.”

I, on the other hand, became increasingly convinced something was terribly wrong.

 

Weekly Nurse’s Calls and a Doctor’s Reprimand 

 

Ninth grade at his new private high school was a disaster. Extensive absences affected his grades. When Billy did make it to class, the nurse’s office called weekly. Dozens of times, I heard the same words from the nurse, “You know, he doesn’t have a fever. I just can’t get him to go back to class. Most students who feel a little under the weather attend class.”

After collapsing while playing golf with his team on a warm spring day, Billy was rushed to the emergency room. Due to severe dehydration, IV fluids were administered. He could no longer could he participate in physical education. During high adventure wilderness training with the Boy Scout’s, Billy buckled as dehydration plagued him on many hikes. I grew accustomed to meeting Jim and B on the C&O Canal or at Sugarloaf Mountain to take Bill to the ER, so Jim could complete training with the other boys.

Halfway through ninth grade, he dropped out of high school and attempted online education. Because he was unable to concentrate, I often found Billy with his head on his desk in front of his computer, asleep.

One morning, Billy’s speech was terribly slurred. Jim looked in his mouth. His tongue was abnormally swollen, and his fingers were as big as sausages. In fact, everything hurt, especially B’s back and legs. Calling his doctor in a panic, the receptionist told me to bring him to the office immediately. Opening the passenger door to help him out of the car, I was shocked to see his doctor blocking B from stepping into the parking lot.

He reprimanded me.

“If you would keep him on allergy shots and stop running in here every week for minor issues, your son might actually begin to participate in life again. He’s having growing pains. Goodbye.”

 

Everything is Blurry

 

Jim now agreed to change doctors after witnessing those severe symptoms with his own eyes. After five years, we were finally unified in finding a new physician. Requesting Billy’s records proved problematic, though really didn’t matter as I had kept detailed notes beginning with his bout with chicken pox. I dated every symptom, school absence, doctor’s visit, and medication prescribed.

Billy’s new doctor seemed determined in getting to the bottom of his ailments. We were referred to Children’s Hospital for a surgical muscle biopsy. Three bleak possibilities would be confirmed or denied with the results. Mitochondrial Disease was one of them. That evening, I fought back tears as I watched my fifteen year old son researching terminal illnesses online.  He woke the following morning, frail, and weakly whispered, “Mom, do you think I’ll live long enough to get my driver’s license? I can’t see. Everything is blurry.”

Yelling for Jim, we noticed one of Billy’s eye was totally dilated, while the was as tiny as a pin-point. The next day, a pediatric ophthalmologist found nothing wrong. How could that be? Jim and I both speculated about and grieved about over which horrific disease would be revealed.

Days after the muscle biopsy, Billy was back in our local hospital with his kidneys shutting down. Physicians administered IV steroids as they believed the biopsy results would reveal the needed answers. They felt addition testing was unnecessary and too risky in his fragile condition. Dialysis was discussed, yet when his kidneys miraculously regained function seven days later, we brought Billy home.

 

Biopsy Results

 

After an agonizing month of waiting for biopsy results, we sat with the pediatric neurologist as he flipped through pages of biopsy results. The doctor slammed the folder shut and glared at me. “There is nothing wrong with your boy. If you want to see a sick child, you might take a walk down the halls of my hospital.”

Then he turned to Jim, “Get psychological help for your wife and your son. I’m done here.”

The doctor exited his office, slamming the door to emphasize his frustration. Driving home, Jim accused me of encouraging Billy to be a hypochondriac. It was as if everyone was blind to Billy’s medical history. Driving from Washington, D.C. back to our Maryland home, I turned to look at B in the back seat and thought, “He’s dying.”

I would learn that our son’s previous doctor believed I was thriving on attention by making my son sick. He warned Jim of his suspicions and evidently passed his thoughts on to various specialists. Those accusations caused doctors to ignore me while glossing over B’s decline. Jim was drawn into the medical community’s blind arrogance.

 

Our Family Was Falling Apart

 

A wicked, divisive chasm was destroying our marriage. My husband’s suspicions turned into vicious verbal attacks unrelated to our son’s failing health. Just as cruel, my husband would retreat into silence for days on end. I was weary, angry one minute and doubting my own sanity the next, and our family was falling apart.

Steroids and antibiotics were administered for months to come. Within days of completing his prescription, dehydration would once again land Billy in the emergency room. Now, all eyes from the medical community, even some friends and family, suspiciously landed on me.

With our marriage in shambles, Jim asked me to go away with him. He told me his dental assistant would stay at our house so we could relax for a week in Belize. Stunned, I could think of nothing worse. When I ignored his request, my husband walked out of the room, and I burst into tears, crying out to God, “I hate him. I don’t want to go.”

I sensed God whisper, “Just go.”

Packing my suitcase was an act of obedience. Nothing more.

Two weeks before our trip, I took Bill for his sixteen year old ‘well’ checkup. No longer would he respond to B or Billy. He wanted us to call him Bill. Stepping out of the exam room, I told his physician my concerns over leaving my son for a week. He shrugged off my worries, saying, “He’s underweight, but he seems pretty good. Go ahead and go with your husband. It will be good for the two of you.”

 

“Get Home Immediately!”

 

Five days into our vacation, on the island of Ambergris Caye, we were summoned to the front desk by an emergency call from the hospital, who said, “Get home immediately. Can you hear your son screaming? He’s broken out of restraints. We need permission to do testing. If he’s not on PCP, your son may have a brain aneurysm. I’m not sure what we’re dealing with, but I don’t think he’ll live through the night.”

Trying to get off the island and make connecting flights from Belize to Houston and finally, Washington, D.C. took a gut-wrenching sixteen hours. Just before daybreak, we made our way to the pediatric intensive care unit.

Sitting at our son’s bedside, the only unity Jim and I shared was grief. Our son was slipping away. The guilt Jim felt penetrated his very being as his tears soaked Bill’s hospital gown.

Pleading with God, I cried out, “Please don’t let him die, Lord. Send someone, anyone who will tell us what is wrong.”

It was the same prayer I had repeated for so many years, yet never with such deep sorrow. Jim stepped out of the room the regain composure.

 

Five Days in Critical Care

 

Bill’s nurse recalled a nursing instructor having a rare disease that presented with a darkened skin tone just like Bill’s. She asked if anyone had tested our son for Addison’s disease. Too fragile to be moved or endure a CT scan, his doctor explained that if Bill survived, it would take five days to confirm Addison’s disease with blood and urine tests. If the nurse was correct, Bill’s only chance of survival was to flood his body with cortisone. We granted permission.

I touched Bill’s hand, carefully avoiding the IV entering a tiny vein below his wrist. My own veins pulsed with anguish and rage, as if those emotions were demanding the two of us to stay alive. With every rhythmic beep of my boy’s heart monitor, I could hear my own heart pound, and I realized I was breathing in unison with my son.

Jim walked back into the room, accompanied by our pastors. They suggested we surround Bill and pray. Our senior pastor pulled a small jar of oil from his coat pocket, pleading for Jesus, our Great Physician, to heal our son. He dabbed oil on Bill’s forehead. At that moment, Bill squeezed his Dad’s hand. The apostle John’s words I had read that morning came back to me, giving me my first glimmer of hope: “Jesus said, ‘This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.'” John 11:4 NIV

After five days in critical care, a CT scan revealed that Bill’s adrenal glands had been shut down for at least a year. Bill was in an acute Addisonian crisis. One in 100,000 adults suffer adrenal insufficiency, a rare autoimmune disease. There were only 26 known pediatric cases in North American when Bill was diagnosed on March 9, 2000. Severe symptoms like Bill’s were non-existent. It was likely that doctors who had prescribed steroids throughout the years had unknowingly helped sustain his life. For hidden reasons, my son was spared.

It suddenly dawned on me why God had whispered for me to leave the county with Jim. If I had been home, I would have continued to be blamed for my son’s illness, and I strongly believe he would have died. With me out of the picture, everyone was forced to look at Bill instead of at me.

 

“Is This What It Feels Like to be Awake?”

 

Now every symptom he had endured over the years made sense. The adrenal glands, located over the kidneys, are referred to as the ‘fight or flight’ gland. They produce hormones that regulate metabolism, the immune system, hydration, blood pressure, and response to swelling and stress.

After Bill was transferred from the PICU to the pediatric floor, we learned that daily oral medication would sustain his life. Doses would be increased with illness, surgery, physical injury, or stress.  An endocrinologist would follow him closely as he learned to manage this disease.

Leaving the hospital, Bill turned to his dad, smiled broadly, and with a bounce in his step said, “Is this what it feels like to be awake?” Bill has no recollection of his hospitalization, nor of the two years prior to his diagnosis; truly a blessing.

 

Learning to Forgive

 

For months following Bill’s survival, I rarely slept, plotting about how to get back at everyone who had ignored me. Refusing to forgive all those who had falsely accused me while ignoring Bill’s dire situation seemed justified. Rage welled up inside me as hurtful conversations replayed in my mind. Un-forgiveness was eating me alive. How often I begged my heavenly father to take away the scars in my heart!

I was missing out on Bill’s newfound joy in life and the miracle God had so graciously given us. Slowly, I gave my righteous anger back to the Lord. In time, Jim and I began to laugh again, and to heal. The darkness which had settled over our home for so many years began to dissipate.

Our family’s unlikely survival may have begun with my simple prayer of thanksgiving when Bill was born. It felt so natural for me to pray as I held my newborn son in my arms. When Billy turned two, he prayed as well, thanking Jesus for his dogs, and his brother and sister. Then Jim joined us – a sweet joy developing as we prayed together daily. When anger crept into our marriage as Bill’s health declined, it was often our son who asked, “Aren’t we going to pray tonight?”

How often we were reluctant to respond, our circumstances overshadowing God’s gift of prayer. Yet as we knelt together, sometimes out of obedience, and other times, so we wouldn’t disappoint our son, God’s grace proved more than sufficient.

“For where two or three gather in my name, there am I with them.” Matthew 18:20 NIV

 

He Made It!

 

During the six years of Bill’s mystery illness, being his mother morphed into being his caregiver. After he was finally diagnosed, it was difficult to break the habit of constantly checking on him. A few setbacks and hospitalizations added to my tendency to hover over him, so I was grateful to witness his growing academic confidence and deepening friendships in high school, as he also excelled in chorus and marching band. And yes, become an Eagle Scout, traveling to New Mexico with his dad and his troop for seven days of wilderness hiking!

He made it!

Bill’s acceptance to Messiah College was a phenomenal achievement. Leaving him at his dorm that first night was glorious and scary. Jim and I cried like babies on our two-hour drive home. Bill’s college years were not without heath trials, but I got better at recognizing when I was actually needed and when I was reverting to my old roll of caregiver.

His survival anniversary is March 4th. Each year, I thank God for my prayer being answered. He sent a wise nurse to identify what everyone else missed.

Bill’s full name is William Joel Rhea. In 2012, he graduated from seminary. He is now an adjunct professor at Christ Mission College in San Antonio, TX. His wife, Maria is an endocrinologist in the U.S. Air Force. The irony of her profession accentuates God’s continuing provisions in my son’s life.

“I will repay you for the years the locusts have eaten.” Joel 2:25 NIV

Bill and Maria Rhea

 

 

 

 

Bill & Maria – October, 2019

happy bubbles

Post photo Photo by Aaron Burden on Unsplash

Karen Rhea

Karen Rhea

Author and Speaker

Karen Rhea has been a keynote speaker for decades, sharing her astonishing life story with transparency, wit and wisdom. Reliance on Jesus shines through her words, whether spoken and written. Now retired from managing her husband, Jim’s dental practice, her writings expand beyond her book, Sick Kids and Those Who Love Them to articles of her struggles and faith. Contributing to her insight and resolve include her background in Community Bible Study, directing women’s and couple’s ministries, traveling abroad on medical mission trips, and singing with the National Christian Choir. Now a widow, the kids are married and her five grandchildren keep her entertained. A sixth is on the way.

 

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