Read an Excerpt
This is the true story of a family in Clinton, Iowa, with five wonderful children. Two of their children were diagnosed with a very rare liver disease. They were able to overcome many obstacles because of their perseverance. But little did they know what was about to happen in their lives. The Lord was preparing them for a greater plan than they could have ever imagined. Their story will encourage you, and bring hope to face every circumstance in your future.
Our first two children were healthy, active girls who hit all of their milestones on time or beforehand. They were good eaters and always on a schedule. They were satisfied for hours on their feedings, and their growth was in line with the national average chart.
When I was expecting our first son, Cameron, everything was great. He was born at thirty-eight weeks, a little blue, but healthy—a happy, satisfied baby.
Cameron was about three months old when he began to demonstrate unusual behaviors. No longer satisfied with his three-hour eating schedule, he began to nurse every hour to hour and a half. I was constantly feeding him.
Around the time Cameron turned eight months old, he grew weaker and vomited multiple times a week. He was never satisfied, he was irritable, did not sleep well, and cried like he was in pain. He required multiple visits to the doctor and the emergency room.
The doctors would send us home, and assure me there was nothing wrong with him. Even though he was sick, he had accomplished every milestone. Cameron was above average on his motor skills: at eight months he was walking, and he could run at nine months. When he was two years old, he had learned to ride a bicycle (without training wheels). He was a ‘go-getter’.
When I tried to wean him from nursing at age two, Cameron would cry. It wasn’t a rebellious cry, but a cry of pain. (Most moms know when there’s something wrong with their children. This is a gift of discernment the Lord gives.) Something was not quite right. A good eater but always hungry, he never seemed satisfied through the night. Around the age three, Cameron stopped nursing. He would wake up in the mornings very sick.
One morning Cameron was lightly crying in his bed. When I went into his room, he was lying there, his face pale in color with yellow undertones. Dark circles under his eyes that were gray in color, and he was so weak that he could not even lift his head. I picked him up and carried him downstairs to the couch. He had dry heaves for two hours, spitting up yellow bile. I tried to give him hot tea and toast, but he was unable to keep anything down.
I called the doctor and took him in to see her; she had no explanation for his symptoms, so we were sent home. Cameron was so weak and sick that it took him seven and a half hours to fully recover. He would not move from the couch unless I carried him, and he could not eat or drink without getting sick. He eventually fell asleep. When he awoke, he ate more than I had ever seen him eat.
This became the norm. These episodes would occur as infrequently as once a month to as many as five times a week, and would last up to eight hours before Cameron regained the ability to walk, or to eat without getting sick.
During this time I became pregnant with Riley, Cameron’s younger sister. The pregnancy was perfect, and the baby nursed on schedule. She was a perfectly healthy baby girl. Now I monitored Cameron’s health, took care of baby Riley, and homeschooled Cameron’s older sister, Madison.
When he was four years old, Cameron woke up with intermittent abdominal pain so severe it caused him to scream and cry. He could not even walk.
We rushed Cameron to his pediatrician, and she immediately admitted him to the local hospital. He was in the hospital for two days with no relief from the extreme pain. The doctors could not find the problem, so they transported him to a bigger hospital.
Think about this for a moment: Your four-year-old child is screaming in pain for two days in the hospital, and no one can help you.
Cameron was seen by a gastroenterologist but, to my surprise, they found nothing, and we were sent home to handle this on our own. The pain was now a new addition to Cameron's episodes. We continued to pray and believe for answers.
I was determined to find answers. For the next two years, Cameron continued to experience severe abdominal pain along with the episodes described earlier. Even though this daily battle continued, I read books, watched documentaries, called hospitals, talked to the specialist, prayed, and persevered in the Word of God; I knew the Lord had the answer.
Cameron was admitted to the Iowa City Children’s Hospital for tests. The specialist did blood work, brain scans, x-rays, and many other tests. She presented a possible diagnosis: abdominal migraines.
As soon as she said it, my motherly instinct kicked in. I knew in that moment it was the wrong diagnosis, and refused to give him the medication she prescribed. The doctors were not very understanding of my decision, so we left the hospital, and I drove home once again with no answers, pleading to the Lord for help.
Several weeks passed, and Cameron returned to his pediatrician. Exhausted, I continued looking for answers.
Cameron began to have severe headaches, so we went back to the children’s hospital in Iowa City to see the neurology team.
The tests took five days. The doctors told Cameron to stay in bed for those five days, hooked up to sixty different brain electrodes, and they ran a fasting test, where he was not allowed to eat or leave his room for twelve hours. Picture a very active five-year-old boy forced to sit still for five days. The doctors believed this would “throw” Cameron into an episode.
He was ill, but his blood sugar never dropped below seventy, so they were not concerned. Hindsight is 20/20. If they would have checked his blood ketones, they would have found a toxic amount in his blood. He was nauseous to the point of vomiting. At the end of these five days, the doctors determined that nothing was wrong.
Again, they had no conclusive answers. They suggested that we feed Cameron protein at bedtime to see if it would help. The doctors believed he had an over-active metabolism and was burning more energy than his body could absorb. They told me to make sure Cameron did not sleep in, to check his blood sugars, and to feed him as soon as he awoke in the morning.
This seemed to help minimize the episodes, but they never stayed away for long.
Within three weeks, we were back to where we started. Day after day, week after week, the same episodes continued. I wanted to give up, but knew in my heart there was an answer somewhere, so we continued to pray and ask the Lord to help Cameron. We had a supportive family and church, and many friends prayed for and came alongside us in our fight.
Had I done something to cause my son's pain and sickness?
As a child, I was sexually abused for years. This caused many illnesses for me, one of which was cervical cancer. I underwent treatment and surgery, and half of my cervix was removed. The surgery revealed scar tissue and endometriosis. The specialist explained that I would never be able to have children.
When I met my husband, he already had a daughter, Aubriana. I instantly accepted her as my daughter, and believed that I would not have any more children. A few years passed, and I found out that I was pregnant. I was in shock, and was told to be on light duty. We found out that he was a baby boy, and a week later we lost him. One year later, I became pregnant with our daughter, Madison. She was born a little early, but was perfectly healthy.
Then I became pregnant again within a year, and once again found out that it was a boy, but lost him within a week. I was devastated, but happy for the two girls I had.
Once again, I became pregnant, but before we knew what the baby was, I miscarried.
I remembered our three babies in heaven. I knew that two of them were boys. My mind was on overload.
During my pregnancy with Cameron, I took vitamins for energy, and thought that perhaps this caused his increased metabolism. I began to feel the guilt and condemnation come upon me. I was so sad for my son. I repented over and over again. I thought that condemnation was from the Lord, but that is not true. Conviction comes from the Lord, not condemnation. For years I believed I had caused this sickness that the doctors could not diagnose.
As Cameron grew, his health became worse. He was the happiest boy, loving and affectionate to everyone. His smile and joy filled every room he entered. However, when Cameron experienced an episode, he became easily irritated, and felt sick with bad headaches off and on throughout the day. He became too weak to walk without help.
Cameron was five and a half years old when his little brother, Caden, was born. For the first week Caden was the best baby boy. He was happy, healthy, and he nursed well. I noticed familiar symptoms when Caden had to fast before his circumcision. He was sick for two days, cranky, unsatisfied, easily irritated, and he wanted to nurse all the time. I tried to tell myself he was in pain from the surgery.
Caden’s eating schedule changed continually. He was only happy when he was nursing. This was familiar. Cameron had been the same way when he was a baby, always wanting to nurse, and irritable when he wasn’t eating. I allowed Caden to sleep with me every night and nursed him, it seemed, all night long. We got very little sleep. This continued for two years.
The doctors wanted me to start monitoring everything the boys ate and drank, and to write down the amount and the time of day, so I kept food logs for weeks.
We now had four children. I was homeschooling, and two of them had these episodes for years with no diagnosis or help from the medical world. I tried to research their health symptoms, but to no avail. I had many sleepless, worry-filled nights, not knowing what else to do but pray and trust God for an answer.
Now that we had another sick child, I was overwhelmed. I could no longer provide my children with the attention and the teaching they needed for school, so we put Madison, and Cameron into private school for a couple years, during which time we took Cameron and Caden to our local pediatrician several times a month. The pediatrician was doing all she could, but still had no diagnosis to offer.
In August 2009, when Caden was two years old, I had weaned him from nursing. Even though he no longer was breastfeeding, he still woke up twice per night to drink milk from a sippy cup.
I continued to give Cameron high protein at bedtime, and waking him by 7:00 a.m. to test his blood sugar.
The doctor suggested the 7:00 a.m. wake-up to prevent him from getting sick. If he slept past 7:00 a.m., he would be sick for up to seven hours. The doctor believed Cameron was simply overly active.
Even though I followed the doctor’s suggestions, Cameron still woke up sick. I sought help from any specialist that would talk to me. Once again we suggested another appointment with another specialist; they scheduled another weeklong test. Even though years had passed, Cameron, now seven, still had many episodes. The tests were always prolonged, and invasive to the point that I had a hard time sleeping because Cameron would cry out in pain.
I would lie in the hospital bed, holding him and praying, “Lord, please help us.”
Tests once again revealed no diagnosis. The doctors would see some of the symptoms, but never to the extent we experienced them at home. We wondered why no one could help us.
I was scared. This disease was truly wearing on him. Many friends and family members also began to see it slowly suck the life out of Cameron. They would ask, “Why is Cameron so gray? What is wrong with him?”
During Christmas break in 2009, Caden slowly came downstairs, and said he felt very sick. He was pale with yellow undertones. There were dark circles under his eyes. He was sweating and shaking. My stomach sank.
I made hot tea and cinnamon toast for him, and held him. Four or five hours passed before he felt well enough to get off the couch.
I talked to Darin about Caden’s episode, and asked him what he thought. He thought it might just be the flu. I didn’t think about it anymore, until five days later when it happened again. This time it was worse.
My heart sank. I thought, “What have I done? What could be wrong with my boys?” and cried, “Lord, please help me. Lord, help me.”
I had told Darin that if Caden had another episode we would need to take him to the hospital.
By this time, we had a glucometer for Cameron to test his blood sugar on the mornings when he was sick to see if he had a slight form of hypoglycemia. Cameron was now eight, and Caden was two years and three months old. He still slept with us because he would cry for milk in the night.
One evening in January 2010, we had an unforgettable experience. This incident will be planted in my brain forever as a reminder of how far we have come. Caden was sleeping between Darin and me in our bed. Around 2:00 a.m., I heard Caden softly whining. As I reached over and touched him, he was sweaty, but clammy; and his little heart was beating so hard I felt it through the blanket.
I scooped Caden’s weak little body up in my arms and woke Darin. We carried Caden downstairs. I grabbed Cameron’s glucometer and tested Caden’s blood sugar level. It was a thirty-two.
Terrified, I called 911 while Darin held Caden as he lost consciousness. I was so nervous, I accidentally hung up. Then I called the doctor, but there was no answer. I was shaking.
Our other three children heard the commotion, climbed out of bed, and sat frightened at the top of the stairs as they watched this unfold.
I called 911 again, and as I talked to the dispatcher on the phone, I was able to drip a little fruit juice under Caden’s tongue, desperately attempting to get his blood sugar up. He was unconscious for fifteen to twenty minutes before the ambulance arrived. He was rushed to our local hospital, and then transported to Iowa City Children’s Hospital.
I held Caden in the ambulance as the EMTs tried to get an IV started. They were unsuccessful.
I was determined not to leave the hospital until I had an answer that could help my boys.
