The Fall

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     At the young age of 27, my three-month-old baby was diagnosed with a rare and fatal brain disorder known as Canavan Disease.

We were in a cramped hospital room surrounded by medical students and doctors in white coats, having barely slept the previous night.

Exhausted and anxious, we waited for news from the doctors.

 

The doctor sat across from us, her face devoid of any smile or expression. With complete seriousness, she told us, “The MRI showed progression of his disease from the last scan. Jaxson has a leukodystrophy, and these babies don't live past their first birthday.”

 

Her demeanor was completely lacking in empathy.

 

Imagine hearing those words about your child for the first time.

 

My entire body went numb as I tried to comprehend what she had just said.

 

So... are you saying my baby is going to die?

 

She confirmed yes and left the room, leaving us alone with this devastating news.

 

My stomach was in knots, and tears streamed down my face. We had countless questions.

How could this happen?

 

My world had been turned upside down. The pain from hearing that news was indescribable. We were trying to process the news of our baby, that might live until his first birthday, perhaps four years at most.

 

That moment when your heart stops beating and your entire body goes numb.

 

That was me after hearing my son's doctor tell me my baby didn't have long to live.

 

It was absolutely the worst day of my life.

 

The heartbreak and despair I endured after my son's devastating diagnosis are far beyond any words I can express. I carried that pain for years, a heavy weight that wrecked me to my core and almost took my life.

 

I found myself knocking on heaven's door, searching for the answers I so desperately wanted.

 

Why did this happen?

Why would God betray me?

Where is Jax going to go after this life?

 

I became obsessed with finding answers that would remain forever elusive.

 

Then came the darkness and anger.

 

If my anger could have killed me, it would have consumed me alive.

 

I drank every day for three years, trying to numb the pain that felt insurmountable. Suicidal thoughts crept in like shadows, whispering, I want to go to heaven, where I could raise my son the way I had envisioned when he was in my womb.

 

All my dreams and plans vanished in an instant.

 

I grieved the son I thought I would have and mourned the son I would someday have to bury.

 

The depths of my sorrow are far beyond words. Sometimes, it felt hard to breathe.

 

The grief paralyzed me for years, leaving me frozen in despair and in constant pain.

 

I was living in my own personal hell.

 

It took me years to climb out of this dark place, grappling with the emptiness, the anger, the loss, the pain, and the anguish.

 

I couldn't function day to day.

I remember telling my family that my insides felt like they were rotting out. That was the only way I could express the physical pain of what I was going through.

 

The sleepless nights were filled with worry about my future and my sweet baby.

 

I often thought, Am I going to wake up one morning to find my baby lifeless, with no pulse?

 

This sounds grim, I know, but this was my reality.

 

I have seen the darkest parts of my soul, and I survived.

 

I feel inspired to share my own personal story, along with Jax's. If I can help anyone going through the same thing—or dealing with grief, depression, anxiety, or finding themselves lost in a dark place—it will be worth it.

 

The bravest thing we can do with our lives is share our stories.

 

And this is mine.

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