What happens when your child is on his deathbed, labelled “failure to thrive”? How do you still trust God?
When Fraser had been born, he was a healthy boy—4.3 kilograms. The first six weeks of his life were joyful chaos as Adrian and Jayne adapted to parenting four children. Adrian worked as a full-time firefighter and part-time pastor of a local church just outside of London. Jayne stayed home managing the children and the household, juggling all the schedules of a busy family.
Life was sleepless, of course, but good. That was normal. But as Fraser approached six weeks, Jayne noticed a familiar pattern. She had seen this before. She had lived through all the fear once before. No. Not again.
“I took him to the doctor for a checkup. When they weighed him, I knew before they even said it,” Jayne remembered. “I hated the words failure to thrive. Olivia also had been healthy at birth, but at six weeks, quit thriving. One emergency room visit turned into six months of intense hospital trips and treatments. But she pulled through and lived to welcome her baby brother into this world. How could we go through this again? He had been so healthy for weeks. A perfectly normal baby.”
Day after day, week after week, Fraser didn’t put on even a gram of weight. At six months old, he weighed exactly the same as at birth. His skin was blotchy. His stomach was swollen like a starving child. Every day felt like death was lingering, ready to swallow him, until one day it pounced.
Our mums discuss what they thought about Adrian and Jayne’s story.
“As we raced him to the hospital,” Adrian recalled, “we had no idea if he would live or if he could live. As Jayne held Fraser’s tiny body, even though she and I weren’t holding each other physically, we were locked into this together. We didn’t understand any of it, but we trusted God as we always had.”
Throughout their ordeal, Adrian and Jayne trusted God in every minute of every day. They had to trust that every time Fraser took a breath, he’d take the next one. That level of trust is what God wants us to be anchored in all the time. When we expect instead of worry, then we can live with a heart full of hope. When we anticipate the best, instead of the worst, we can live faith-filled every day. I believe God wants to teach us practical ways to trust Him more in our everyday lives so that we won’t live holding back. But, to be freed from this kind of fear, we will have to let Him lead us one growth step at a time. That’s what He did for Adrian and Jayne, and He started teaching them long before Fraser was born.
“Adrian was a firefighter and the station where he worked was just a few blocks away,” Jayne explained. “Early in our marriage, I would always hear the sirens blare when they got a call, and fear would grip me. I remember one day telling myself I just couldn’t let fear rule over me like that. It was exhausting me. God spoke to me from the Bible, and it became a promise for me to cling to about Adrian: ‘When you walk through the fire, you will not be burned; the flames will not set you ablaze’ (Isaiah 43:2). But I also thought, If Adrian does die in a fire, then he died doing what God had called him to do. I had to be both realistic and walk in faith.”
Yes, we resist fear, but the way we fight it is to learn from it by first facing it so it loses its paralysing effect.
I love that God taught Jayne it wasn’t either/or. It was both/and. She knew the risks of Adrian’s job that he loved and she stood on God’s promise for his safety. She understood we can step out in faith and still feel afraid. We can choose to believe God’s Word, put our heart in His hands and still have to resist the fear trying to take root inside. We can embrace the process and move forward, even if we take a few steps backward at the same time.
This strengthening of Jayne’s faith is what ultimately enabled her to withstand the agonising heartache of Fraser’s illness. Some days she couldn’t even touch her baby because he was so fragile; her touch could have sent him into cardiac arrest.
“I remember the moment when I didn’t think I could endure any more of the suffering with Fraser,” Jayne says. “Our lives had been out of control for such a long time and there was nothing we could do to fix it. I didn’t know what else to pray. We had fasted, anointed him with oil—everything we’d ever learned. And most of those times, things only grew worse. I didn’t know what else to think or say or do. And the Lord’s Prayer rose up in my heart. Lord, give us our daily bread.
“It occurred to me that I could just focus on the daily bread. I could believe God for the next step and quit thinking about anything else. So I began thanking God every day for daily bread. I thanked Him for the small things. After almost a year of fighting for Fraser’s life, that was all I could focus on.”
God was showing Jayne how to trust Him in every single moment—by receiving her daily bread. God doesn’t promise us weekly, monthly or annual bread. He promises us daily bread—bread for the moment. God was showing her how to overcome when she felt utterly overwhelmed, when fear was constantly trying to destabilise her heart. When she couldn’t make sense of anything that was happening, when she felt like the circumstances were suffocating her and she couldn’t come up for air. That’s when God was saying: Quit thinking about all you can’t control and just focus on today. Just focus on what you can do, on what you can change, on what you can accomplish to move forward, even if you take steps back at the same time. He was teaching her how to not be overwhelmed.
Approaching a full year since their ordeal began, Adrian and Jayne continued living between the hospital apartment and around Fraser’s bed. And little changed.
“I was always honest with God, telling Him that I didn’t understand why all this was happening,” Adrian confesses. “But at the same time, I believed in His promises to me and Jayne. We resisted fear every time it tried to grip our hearts. We were determined to bash on.”
“I think you can learn from fear instead of letting it affect you,” Jayne said. “It’s like learning to escape a riptide current. We always taught our children that if they got caught in one at the beach to not panic and fight it, but swim parallel with it because it will eventually end and you can escape and swim back to shore. Yes, we resist fear, but the way we fight it is to learn from it by first facing it so it loses its paralysing effect. We recognise it for what it is and somehow let God grow us in the midst of it. And when we do, he’ll help us get back to shore.”
One day, a leader from Adrian and Jayne’s church came by. He wanted to pray for Fraser. Not a day had gone by that someone hadn’t prayed. As the man prayed, a solar eclipse over London blanketed the sky in darkness. As the eclipse passed and light shone again, something shifted.
When Fraser was weighed the next day, he had gained 14 grams. It was as though he’d experienced a supernatural eclipse—a passing from darkness to light. To Adrian and Jayne, it was a miracle. He moved from being overshadowed by darkness to gradually coming alive. They were amazed that he continued to gain weight every day after that. He began to thrive!
“After four-and-a-half months at Great Ormond Street Children’s Hospital,” Adrian said, “they decided Fraser was thriving enough to send us home. It had been a full year since we’d first raced him to the emergency room. He was the only one from the ward who ever went home. We still came back for weekly visits and we learned to inject nutrition into his body through a tube in his side every four hours—for the next four years. We jokingly called it his ‘rocket fuel’, and it smelled awful, but we didn’t care. He was thriving.”
Fraser was 10 years old before he was completely off all medication. He was 12 when he finally got to attend a local school. Today, he is a lean 1.85-metre tall student in his third year of an apprenticeship in landscape construction. He plays rugby, drives his own car and serves as a youth leader at church. He has two small scars on his abdomen that testify to his fragile first years of life.
Taken from Unexpected by Christine Caine. Copyright © 2018 by Zondervan. Used by permission of Zondervan. www.zondervan.com.
