The storm had stopped and left a steamy, early-June night. The city seemed to sparkle. I had given birth only hours before. Now I kneeled alone on the couch overlooking the window. No baby in my arms. The pain in my heart was throbbing, keeping me awake.
I heard a baby crying in another room and the sound seared my heart. Tears streamed down my face. I couldn’t even bring words to my pain. All I could say, again and again, was “God, heal my son. Heal him.”
We were so excited—after eight years of marriage and numerous fertility treatments we finally found out that we were expecting. I felt like Hannah in the Bible; God had blessed me with a child who would be used in His service.
Being pregnant was an amazing feeling. Little Charlie kicked me constantly and was always moving around. I talked to him on my way to work and on the way home. I loved having my little buddy with me.
I went into labor three weeks early. I started crying when they laid him on my chest and I heard Charlie cry for the first time. He stared at me with big, violet eyes. His color looked good. But the more my husband, Steve, and I looked at his face, the more we noticed something strange. His nose and his mouth were white, making it look like he was wearing a mask. When I commented on it the nurse took him away immediately.
After Charlie was examined in the nursery, a doctor came to tell us that Charlie was covered in a membrane called collodion. It was so tight over him that his eyelids were inverted and his fingers were curled. They told us that the membrane would peel off, that he might blister all over, and that infection was a huge risk. They were sending him by mobile intensive-care unit to the nearest children’s hospital, 30 miles away, where he would be admitted to the neonatal intensive-care unit in critical condition. His condition was so rare that it occurred in one in 600,000 births.
They brought Charlie to me to say goodbye, but I couldn’t touch him or hold him. He looked so small and alone. My heart was so heavy that I just wanted to be alone. I believed that God could heal my son, but I knew that He might not. But why wouldn’t He? He had blessed me with this amazing gift after waiting so long. How could God not heal him?
The next morning I went down to the children’s hospital and saw Charlie. They had him in an incubator, connected to tubes and wires. He was completely covered in goo and white gauze, like a burn patient. The only part visible was his face and head. He was a golden color. They said his liver enzymes were up, but they couldn’t put him under a special light because of his skin condition.
Steve and I staggered shifts so that we could be with Charlie and hear whatever the doctors might say. They knew his condition was ichthyosis, although they didn’t know what kind. The doctors there were unfamiliar with the condition because it was so rare. Charlie had his bandages changed every three to four hours. It took almost an hour to redo them. During this time it was easy to see the condition of his skin. It looked as if he were covered with plastic wrap. Bands of membrane were so tight that he couldn’t open his fingers. Every area was monitored to make sure that infection didn’t set in.
The doctors became concerned as Charlie’s weight kept dropping. They told us they might have to insert a feeding tube. I prayed that God wouldn’t allow anything further to happen to him.
One night the doctors told us that Charlie had one more feeding to take a decent amount of formula or they were going to use a feeding tube. He had barely eaten anything for several days. I left devastated. I awoke at 3:00 in the morning, knowing that they were probably putting the feeding tube in right then. We finally called the nurse, who said that Charlie had finally eaten his full amount and that we wouldn’t have to deal with a feeding tube!
God had answered our prayer.
After 12 days we were able to take Charlie home. He still had collodion all over him. Doctors told us to wait until it was all off to see the condition of his skin. There was a chance that he might be a self-healing collodion baby. Although that wasn’t common, I wanted to believe that it would happen. Charlie was in pain as the collodion membrane cracked and peeled.
By September the collodion membrane was gone, and we were able to see the true condition of his skin. At first it appeared smooth and soft, but it wasn’t long before it began to scale. His ears became impacted. His eyebrows were covered in hard, crusty scales that looked like scabs.
One night long after Charlie had fallen asleep I sat in the rocking chair in his room and watched him sleep. I cried. I knew that our son would never have a life that was free from pain and discomfort. God hadn’t answered my prayer in the way I wanted so desperately. I wasn’t praying for anything selfish. I didn’t even want anything for me. I just wanted my son, who had never done anything wrong, to have a healthy life, to not be in pain and discomfort, not to be bullied and made fun of by others. Why hadn’t God answered my prayer?
There are so many worse conditions that Charlie could have been born with. He could have had a worse form of ichythosis that caused blistering instead of scaling. But somehow that didn’t make me happy. I saw other mothers at the store and saw how healthy their babies’ skin looked. I couldn’t even speak with them. Their concerns about why their babies didn’t sleep for long periods, or how much food they should be eating, paled in comparison to all my son was facing and would face the rest of his life.
Then one day it hit me. How weak my faith was! God doesn’t promise a life free from pain. God promises only to be with us, every step of the way. God created my son, formed him in my womb, and allowed him to be born with this condition for a reason. One day in heaven I’ll find out why.
God didn’t spare His own Son. Jesus, the Son of God, came to suffer in a world of sin and be nailed to a cross, dying a slow, agonizing death. Why did I think that we sinful humans should be exempt from pain?
I don’t know what God is doing. I can’t see the end from the beginning. But I choose to trust Him anyway, every day. After a long day from work I come home to my son. I watch him push through all the obstacles he is facing with a smile on his face. He laughs and plays. He doesn’t stress about the future. He doesn’t seem to notice that he is different from other children. His innocence helps him to trust.
God allowed our son to carry this disorder. He has an amazing plan for Charlie’s life, and I won’t do anything to get in the way.
Elisabeth Hirtzinger lives in Springfield, Ohio, with Steve and Charlie.
