Jax's Miracle: We Stopped Waiting for Him to Die and Started Living

As I walked up the stairs of our three-story townhome and continued down the hallway, I had this eerie feeling. Something felt off. Something wasn't right.

My bedroom door was closed.

Did I close my door?

That's weird. I didn't remember closing it.

I opened the door and walked into the dark bedroom where my three-year-old was taking a nap—or at least, I thought he was.

I looked at the bed. The pillows we used to prop Jax on his side were all messed up and lying on top of him.

My heart sank.

I hurried over and turned on the bathroom light so I could see better. I didn't want to wake him. He had spent the whole day crying, and he desperately needed some sleep.

But something wasn't right.

I found him lying face down on his stomach, his face buried in the blanket with pillows piled on top of him.

I turned his head to one side. As I did, I felt that the blanket underneath his face was warm from where he had been trying to breathe. Because of his disease, Jax couldn't simply move his body or turn his head to free himself.

Fuck.

My heart started racing.

I bent down and watched his chest.

Nothing.

His chest wasn't moving.

I turned him completely onto his back and looked again.

Nothing.

I put my cheek next to his mouth, trying to feel his breath.

Nothing.

I ran over, flipped on the bedroom light, and looked down at him.

He was pale as a ghost.

His lips were blue.

"TREV!" I screamed. "Get up here! Jax isn't breathing!"

My husband darted up the stairs.

For a few seconds, we both just stared at him. Our bodies froze. We were in complete shock and didn't know what to do.

"Quick! We need to give him CPR!"

Trevor picked up Jax's lifeless body, laid him on the floor, and started CPR.

Neither of us had ever been in a situation like this before—especially with our own child.

"Where's my phone? I need to call 911!"

I couldn't find it.

"Where is my phone?" I cried.

Finally, I found it and called.

"Hello, we need help. Our baby isn't breathing."

"We're sending an ambulance now. Keep doing CPR," the dispatcher told me.

The reality of what was happening started to settle in.

I sat on the bed watching from above as my three-year-old son lay lifeless on the floor while his dad performed CPR.

Then I bent down and looked at him.

His tongue twitched.

Maybe. Just maybe, there's hope.

I ran downstairs to watch for the ambulance. I stood on our front porch in absolute fear as tears streamed down my face. My neighbors were outside, but I couldn't even muster the words to explain what was happening. I just stood there crying.

Finally, I saw the ambulance.

I ran into the street, waving them down.

"Hurry! This way!"

Several paramedics jumped out, and we raced up two flights of stairs. They ran into the bedroom and took over.

I sat on the bed and watched.

Fuck. This is all my fault.

My baby is gone.

My baby is gone.

My body went numb. I couldn't sit still. I paced back and forth while, with a trembling voice, I told the officer what had happened.

And then—

Jax started breathing.

Happy tears streamed down my face.

Thank God.

He was breathing.

He was alive.

They quickly loaded him into the ambulance. We needed to get him to the closest hospital.

I climbed into the ambulance with nothing—not even shoes.

"Steph, don't you need some shoes?"

Shoes seemed like the most pointless thing in the world at that moment.

"Sure, I guess. Let's just go."

Trevor stayed behind with the officer, who continued questioning him about what had happened. Eventually, Trevor told him, "I need to go see my son. You need to leave."

In Trevor's mind, Jax had died.

He raced to the hospital and called our family along the way, telling them that Jax was gone.

But when Trevor walked into the hospital, he saw something neither of us knew if we would ever see again.

Jax was breathing.

Our son was alive.

It was a freaking miracle.

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"How long was he without oxygen?" they asked.

I honestly had no idea. I thought he was asleep. I had been downstairs cooking dinner so we could finish getting ready for our date.

"It must have been more than ten minutes," I said.

I told my story several times to different doctors. No one seemed to know exactly what to do for him. He was breathing, though, and that was a miracle in itself. They gave him breathing treatments to help his throat and told us they were going to send him to Primary Children's Hospital in Salt Lake City, where specialists could care for him.

"Okay," I said, still trying to process everything that had just happened.

I was terrified. How much brain damage had he suffered? Would Jax ever be the same? What was going to happen from here?

At the same time, I was filled with gratitude because he was still alive.

We took another ambulance ride to Primary Children's Hospital. As we drove, my mind replayed everything that had just happened. I couldn't stop thinking, How could this happen?

When we arrived, an entire team was waiting for us. They took Jax straight to the ER. The room filled with nurses and doctors asking me countless questions while they immediately started working on him. They cut his shirt right off his body.

My anxiety was through the roof as I tried to recall the terrible events that had just taken place. Social workers hovered around me, making sure I was okay.

Of course I wasn't okay. I had just seen my son blue, lifeless, and not breathing. Who would be okay?

I remember just wanting to be alone.

Time seemed to slow down, and I was in complete shock.

After hours of sitting in uncomfortable chairs and explaining what happened over and over, it was finally time to move to the PICU.

That night, I curled up at the end of Jax's bed listening to his raspy breaths. His little lungs were working so hard to keep breathing.

Eventually, the doctors put in a breathing tube, and he remained intubated for two weeks. They tried several times to remove it, but every time, he struggled to breathe on his own.

Eventually, the doctors started to believe there was no hope for Jax.

"He was without oxygen for too long," they told us. "There's too much brain damage. Jax will never be able to breathe on his own."

They told us he would be on a ventilator for the rest of his life and that it was time to consider what was best for Jax. They didn't believe he would have a good quality of life.

Then they told us they had medication that could make him comfortable and allow him to pass peacefully in his sleep.

What the hell? This can't be the end of his story.

The guilt settled in. I cried more than I had ever cried before. There was no hope, no future—just darkness.

I went over everything again and again in my head. I wanted what was best for Jax, but how could I possibly make that decision?

It felt like I was being asked to end my child's life.

No parent should ever have to be in that position. It was one of the worst feelings in the world.

"NO," my husband said. "I think Jax can breathe."

This time, Trevor was Jax's advocate. He was certain our son could breathe.

"We are not giving up on him."

One of the doctors had previously suggested that swelling in Jax's throat might be part of the problem and that a steroid could help. Trevor remembered that and pushed for them to try it before we gave up.

The doctors agreed to try one last time.

They gave Jax the steroid and prepared to remove the breathing tube.

I sat beside him holding his hand. We all waited, staring at him.

"Come on, Buddy. We believe in you. You can do it."

They removed the tube.

Jax started breathing on his own.

No choking. No gasping for air.

He was just breathing.

Then he looked up at me and gave me a little grin.

My stomach sank, but this time in the best possible way. I started crying with relief.

He could breathe.

After everything we had just been told, Jax was breathing on his own.

It was honestly one of the best moments of my life.

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Jax was finally moved out of the PICU and given his own room "on the floor," as they called it, where they could continue monitoring his heart and make sure everything was okay. We stayed there for another two weeks.

I was scared to see how he would recover. I didn't know if the same Jax would be coming home with us. To this day, no one knows exactly how long he was without oxygen or how much additional brain damage was done.

He was a freaking miracle!

The crazy thing was, when we finally brought him home, he seemed like an even better Jax. He was a happy, smiley boy who suddenly had a lot to say.

We spent the next four years with a happy Jax and made some of the best memories of our lives. We lived, laughed, and loved more deeply.

That month had taught us so much.

For years, we had been living with the fear that Jax could die at any moment. After almost losing him, something shifted in both of us. Trev and I became determined to give Jax the best life we possibly could with whatever time we had left.

We started to get better.

Our family started to get better.

We were finally happy.

2019 became one of the best years of my life.

Something beautiful came from that tragedy: we weren't waiting for Jax to die anymore. We decided to start living instead.

It was one of the best decisions we ever made.

We started hiking, spending time with friends, getting out of the house, and doing fun things with Jax. I wanted to give him the fullest life he could possibly have and make as many memories together as we could.

Our life looked different from other people's, but it was what we knew.

It was our little family against the world, and we were finally happy.

For so long, I had wanted other people to understand what our life was like. Eventually, I realized they probably never completely would—and I was finally okay with that. I didn't need them to understand anymore.

Something also began changing in my relationship with God.

I wasn't as angry anymore.

After everything that had happened, I knew I needed something greater than myself to help me through this life. I couldn't carry everything alone anymore. Slowly, I began developing a different relationship with God and a new perspective on everything we had been through.

I felt stronger.

I felt grateful.

And for the first time in a long time, I wasn't looking at Jax and thinking only about how we might lose him.

I was looking at him and thinking about how lucky we were that he was still here.

Life has a way of teaching us things we never expected to learn.

We had been given more time with our son, and I wasn't going to waste it being afraid of what tomorrow might bring.

I didn't have all the answers. I still had a lot of growing to do, and there would be plenty of hard days ahead. But something inside me had changed.

I stopped waiting for the worst thing to happen.

I started enjoying the life that was right in front of me.

Jax was here.

We were together.

And for now, that was enough.

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This year wouldn't have been the same if we hadn't endured the hard times that came before it. We lived, laughed, and loved! From celebrating birthdays and holidays to spending time with friends, enjoying makeovers, working out, baking, and playing, it became one of the best years of our lives. We had finally learned how to dance in the rain instead of waiting for the storm to pass. Little by little, we were putting ourselves—and our family—back together again.