When Life Throws a Curveball: The Diagnosis That Changed Our Lives Forever

Sitting on the edge of my bed in our third-floor, two-bedroom apartment, tears streamed down my face as I tried to process the news about our beloved baby boy. We had spent two weeks in the hospital undergoing every possible test. At just two months old, Jax had endured more poking and prodding than anyone I knew.

After discovering that his diagnosis was a leukodystrophy, we were finally allowed to go home. A leukodystrophy is a disease of the brain that affects the white matter. It is progressive and deadly. These precious babies will never walk, talk, or even hold their heads up, and new health problems will continue to arise throughout their lives.

The nightmare had seemed to be over, but it was just the beginning.

We didn't realize then just how much our lives had changed forever. Our dreams and goals would never be the same. We would never be the same. We had been dropped into the depths of life. There was no going back and nothing to go back to.

Walking into our apartment, we were exhausted and tormented by the news we had received. The heartache, sadness, emptiness, anger, exhaustion, and confusion finally took hold.

How could this happen?

Later that night, I sat on my bed feeling hopeless and abandoned by God. I questioned everything. God should know I could never survive this. I felt as though He had betrayed me, my son, and my family.

What if there wasn't a God? What if everything I had been taught wasn't true?

I imagined a world without heaven, without an afterlife—nothing but darkness after death. I dwelled in that darkness for a while. I was completely terrified. It was the darkest moment of my life, filled with complete hopelessness.

What was the point of life? Would I ever see Jax again after he passed away?

That thought haunted me.

Sitting on my perfectly made bed with the brown striped comforter from our wedding, I started sobbing. Tears streamed down my face, and I cried for what felt like forever.

Then suddenly, I felt my grandpa's presence.

I looked up as if someone had sat down beside me. I smiled and said, "Hi, Grandpa."

A warm, comforting feeling came over me. For a moment, I felt loved, comforted, and supported. I could feel his presence with me, as though he understood my pain and had come to remind me that I wasn't alone. It was one of the most real experiences of my life.

My tears of sadness turned into tears of joy.

A glimmer of hope emerged.

There must be a reason for this.

And I was determined to find out.

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For the next three years, I searched tirelessly for the answers I so desperately wanted. Why did this happen? Where would Jax go after this life? What was the purpose of life? These were the existential questions I couldn't stop asking—the kind of questions many of us wrestle with when life cracks us open.

One evening, while I was preparing dinner, there was a knock at my door. It was the missionaries. I immediately wondered who had told them about our struggles. It had to be someone.

I invited them in and asked, "Who sent you guys?"

They looked at each other, confused, and said no one. I insisted, convinced someone had put them up to this. Those poor young missionaries had no idea what they had walked into, lol. I can still picture their faces.

Little did they know how much they helped me during a very dark time. I truly felt God had sent them to my door that night. You never know who your teachers will be—young or old, wise or naive. We lived on the third floor, and no one climbed all those stairs unless they absolutely had to. That's what I told myself anyway.

I agreed to meet with them and even returned to church for a time. I turned to prayer, scripture, and missionary lessons, searching for anything that might ease my pain. For a while, it helped.

But eventually, my anger took over because I still couldn't find the answers I was searching for. If there was a God, how could He be so unjust? Why did some of us have to endure so much more suffering than others?

Eventually, I was exhausted and depleted. Once again, I felt betrayed and abandoned by God. I was angry, and I turned away from everything I once believed.

My first son, Jaxson, was diagnosed with Canavan disease at just three months old—a rare, progressive, and fatal brain disease and a type of leukodystrophy that affects the white matter of the brain. We were told that his brain would become sponge-like, that he would never be able to learn or develop a personality, and that he would essentially remain in a vegetative state for his entire life. We were initially given a life expectancy of just one to four years.

In one night, all the dreams we had for our son disappeared. We grieved for the son we thought we would have while beginning to mourn the son we knew we would eventually lose.

Driving home from the hospital, I cried out loud in anguish. It was the most excruciating pain I had ever experienced.

Later that night, we laid Jax on our bed and looked down at him.

There he was—a happy baby, kicking his feet and smiling.

To us, he was perfect.

We didn't see a disease or a prognosis. We saw our son. We saw a soul who loved us, and we loved him.

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God, Why?

I look at you and can't imagine loving you anymore

The pain is always there

Thinking one day I will have to let you go

Wondering why God would do this

Seeking for answers to understand

How could you be so cruel

To someday take my baby away

I have to believe this happened for a reason

I will always search for an explanation

I wish I knew

I wish I knew in this lifetime why this had to happen

Sadly, this is a mystery

something to do with our history

I drove myself crazy searching for answers

Only thing I can do is keep living

Hoping one day this will become easier!

For a long time, I struggled with my faith in God following my son's diagnosis. I couldn't find peace with what I had gone through or with everything Jax had endured. I struggled to forgive the God I had been taught to believe in. Still, I needed something—or someone—to help me through it. I couldn't do it alone.

It wasn't until my son nearly died that I discovered a spiritual practice that truly resonated with me and brought me peace. If you're in that place now, keep searching. I hope one day you find what brings you peace, too. There can be light at the end of the tunnel.

For me, I had to be broken open before I could begin rebuilding myself. Some of the hardest times in my life have also been the times when I have grown and learned the most.

Jax has taught me so much over the years, and I am incredibly grateful for him. He is pure light, with nothing but love to offer. I wouldn't be who I am today without Jax. Believe me, I had to go through hell and back to reach this point, and I wouldn't trade the person he has helped me become.

But I would give anything for Jax to be whole. I would give my life for him to have the life he deserved.