A Gentle God Hug

We first met little Sarah when the Make-A-Wish Foundation sponsored her trip to 3ABN. She was only seven years old, already a weathered warrior from her battle with brain cancer. Yet despite all she had endured, the joy that overflowed from her heart was contagious.

Sarah loved Jesus. In fact, Jesus was her favorite subject. If she was not talking about Him to others, she was singing to Him. Even as a child, Sarah was an evangelist for Jesus, a bright little witness whose love for the Lord seemed to bubble up and spill over onto everyone around her.

Shelley and I felt an immediate bond with her parents, Denise and Ivan. They possessed a remarkable trust in God and a humble acceptance of His will. I remember Ivan once explaining that they believed God had placed Sarah in their care to help make certain they were saved. Through the fiery trials of Sarah’s battle, they had moved from religion into a living relationship with the Lord. God had secured them in His loving embrace, and they were doing their best to trust Him with Sarah’s short life expectancy, while still praying for a miracle.

That was twenty-two years ago.

Since then, Sarah’s story has been one of multiple brain surgeries, seizures, setbacks, and seasons of being wheelchair-bound. Yet it has also been a story of miracle after miracle. More than once, doctors have uttered those dreaded words: “Sarah has come to the end of her battle. She will not survive this time.” But then, to their amazement, little Sarah would later bound into their arms for a hug at a follow-up visit.

Through it all, Denise and Ivan have stood faithfully by her side, expressing absolute dependence upon the Lord.

At this writing, Sarah has been hospitalized for more than a month, most of that time in the Intensive Care Unit. This came after her most recent surgery for a brain tumor, followed by another surgery a week later for infection. Her precious body is so tired that she has not been able to breathe on her own, and she has been on a respirator for a couple of weeks. The dramatic ups and downs of her oxygen saturation have brought continued stress. We celebrate with her parents when Sarah has a good morning, only to feel our hearts sink when she crashes in the afternoon.

Recently, Shelley asked Denise, “How do you survive the emotional ups and downs?”

With her soft, steady voice, Denise said, “Living with a medically fragile child is like being strapped into a massive roller coaster you never bought a ticket for. It is full of ups and downs, twists and turns, sharp drops that take your breath away, and death-defying loop-de-loops that leave your heart pounding. And just when you think you have learned how to hold on, a medical professional may lean over and say, ‘By the way, somewhere on this ride, some bolts might come loose—but we don’t know where or when. And no, you can’t get off.’”

Those words capture the life Denise and Ivan have lived for more than two decades.

Over the past few days, they have been told about decisions they must make as Sarah’s guardians—decisions that could alter the course of her life. Those words alone feel heavy. Decisions. Alter. Life. When you are the parent of a medically fragile child, those words do not stay neatly inside a doctor’s consultation. They echo in the hallway. They follow you into the cafeteria. They haunt the sleepless hours of the night and fill the quiet space between one breath and the next.

Denise has learned that survival does not always look like strength. She says sometimes survival looks like sitting in a hospital chair with swollen eyes, holding your child’s hand, whispering prayers you do not have enough energy to finish. Sometimes survival means asking the same medical question again because your exhausted mind cannot hold the answer. Sometimes survival is simply breathing in and out while your heart is trying to break.

And sometimes survival means “searching for sunshine with a microscope.”

Denise told Shelley, “Over the past twenty-two years, I have learned to cling to the bits of sunshine—the good moments, no matter how small. The day Sarah moves her left hand. The day she opens her eyes. The day she takes a first step after surgery. The day she falls but does not get hurt. The day she responds. The day she recognizes me. The day a doctor gives us a little better news than we expected.”

To someone else, those moments might seem small. But to parents who have lived for years on this roller coaster, they are sacred. They are gifts. They are reminders that God is still writing the story, even when the chapter is painful.

Right now, Denise and Ivan are thanking God that the antibiotics have cleared the infection from Sarah’s blood. They are thanking God that there is no sign of cancer in her culture. These are not little things to them. These are “stop and praise God right now” moments—shafts of light breaking through the darkness.

And then there are moments no lab report can measure. Holy moments. Tender moments. Moments that become oxygen to a weary mother’s soul. Like the other night when Sarah clung to Denise’s hand and said, “Mommy, I love you.”

Those words were more than words. They were a spark in the darkness. They reminded Denise why she stays, why she fights, why she advocates, and why she keeps standing when her body is exhausted and her heart is overwhelmed.

Denise has also learned that in situations like this, you must find every small moment to laugh. Laughter may seem out of place in a hospital room, but sometimes it is a gift of mercy. Sometimes humor is the handrail God gives you so you do not fall all the way down into despair. It does not mean the situation is not serious. It means sorrow has not swallowed every bit of light.

A couple of times recently, the ICU staff suggested Denise should go home and rest. They meant well. “You need to stay healthy,” they said.

But Denise stood her ground. “I stay.”

Sarah has special needs. She cannot fully advocate for herself. Denise is not only her mother; she is her protector and her voice. She recognizes the subtle changes in Sarah’s face, breathing, movements, and eyes. She knows what “normal” looks like for Sarah when no one else in the room does.

Yesterday, the day nurse asked again, “Would you be more comfortable sleeping somewhere else?”

Denise replied, “No, thank you. I don’t like to leave my daughter. She’s special needs. She can’t advocate for herself, and I never leave her.”

Later that evening, Denise stepped out briefly for supper. When she returned, the chair she had been sleeping in since they first arrived was sitting out in the hallway.

Her stomach dropped.

That stiff, uncomfortable chair had become her place, her post, her little corner of the battlefield. Seeing it in the hallway made something rise up inside her. Her inner mama grizzly woke up. She was tired, emotional, protective, and ready to fight.

But when she stepped back into Sarah’s room, she was overwhelmed.

The nurse had not removed her place beside Sarah. She had improved it. She had found Denise a recliner—not the stiff “Motel 6” chair she had been sleeping in, but something that felt much closer to the “Hilton.”

It was a small thing in the middle of so many big things, but to Denise it felt enormous. It felt personal. It felt tender. It felt as though God had reached into that sterile hospital room and whispered, “I see your needs, too.”

Denise said, “That recliner felt like a gentle God hug.”

Sometimes we expect God’s comfort to come in dramatic ways. We look for the Red Sea to part, the mountain to move, the storm to stop. And yes, God can do all of that. But sometimes His kindness comes as a better chair, a compassionate nurse, a hand squeeze, a clean culture, a moment of laughter, or a daughter whispering, “Mommy, I love you.”

These are not accidents. They are reminders that the Lord has not forgotten His children on the roller coaster. He is with them in the decisions, in the uncertainty, when they are strong, and when they are barely holding on.

Psalm 34:18 says, “The Lord is near to those who have a broken heart.” Isaiah 41:10 promises, “Fear not, for I am with you… I will strengthen you, yes, I will help you.” And Isaiah 66:13 paints this tender picture of God’s care: “As one whom his mother comforts, so I will comfort you.”

That is exactly what He did. He comforted Denise in a hospital room through a recliner she did not expect, at a moment when she thought she was about to break.

So tonight, as Denise and Ivan face hard decisions and unknown outcomes, they are choosing to look for the bits of sunshine. They are choosing to celebrate small mercies. They are choosing to believe that God is still holding them steady, even when the roller coaster shakes.

Because sometimes grace looks like a miracle. And sometimes grace looks like a recliner beside your child’s bed.

Don’t you just love those gentle God hugs?