Behind Closed Doors: Raising a Medically Fragile Child

The truth is, raising a medically fragile son has been the hardest journey of my life.

Waiting for your child to pass away is one of the hardest roads you will ever have to go down, in my opinion. When you're in it, you're in it, and you can't see beyond anything else.

It consumed me, taking up almost everything within me.

The sadness, the grief, the loss, the worry. At the same time, you can't imagine loving anyone more. You love them so much it hurts.

As a young 27-year-old, I had no idea life could get this hard. I wasn't prepared for the hardships ahead. No one could possibly be prepared for what we were about to go through. My dad told me from the beginning, "It's going to be a hard road," and he was right.

Our life looked very different from others. It was filled with doctor visits, hospital stays, medications several times a day, feeding tubes, medical equipment, wheelchairs, surgeries, therapists, nurses, seizures, and emergency ambulance rides.

Every day felt hard.

But looking back, the hardest part was the emotional weight I carried every single day.

From the moment I opened my eyes in the morning to when I closed them at night, I knew my child had a fatal brain disease. It haunted me. I carried that emotional pain everywhere I went. It lived in my stomach, and I carried the weight on my shoulders.

It was always there—the fear, the sadness, the anger, the worry, and the grief.

You spend so much time wondering when the last moment will come.

Was that our last birthday?

Our last Christmas?

Our last summer?

How many more times will I see that smile?

How many more times will I get to hold my son?

How much time do we have?

Is his disease getting worse?

Am I going to wake up one morning and find my baby dead?

But I wasn't only grieving the possibility of losing Jax.

I was grieving the life I had dreamed of for him and for our family.

His first steps.

His first words.

What he would be like.

You wonder what your child will love and who they will become.

I never got to hear Jax say, “Mom.”

I never got to watch him take his first steps.

And as he grew, I began to realize just how many of those firsts we would never have.

His first bike. His first best friend. Finding out his favorite color. His first car. Getting his driver's license. Graduation. Falling in love. His wedding day.

Even the grandchildren I once imagined I might have someday.

I was grieving an entire future with my son while he was still right there in my arms.

That was such a complicated kind of grief.

I was incredibly grateful Jax was still here, while at the same time grieving everything his disease was taking from us.

I wanted to freeze time.

I wanted to hold onto every smile, every laugh, every little moment because I never knew which one might be the last.

So I learned to live differently.

Day by day. Hour by hour. Minute by minute. Sometimes second by second.

Time slowed down.

The things I once thought mattered didn't seem to matter anymore.

I didn't care as much about material things, fitting in, being perfect, or what the world thought our life should look like.

All I cared about was my little boy.

I wanted to save him. I wanted to protect him. I wanted to make him comfortable. I wanted to give him a beautiful life with whatever time we had.

And the realization that there were some things I couldn't save him from.

That was the weight I carried.

And most people never saw it.

There were nights I would wake up to Jax screaming as if he were in severe pain.

His little body would become rigid. His legs would kick repeatedly. His face would turn bright red, and he would be burning hot.

Another fever.

I'd carry him into the bathroom and put him in a cool bath, desperately trying to bring his temperature down.

My heart would race.

Was that a seizure?

What just happened?

Is this the progression of his disease?

What's happening to my baby?

I didn't know.

That was one of the hardest feelings as his mom.

I didn't know how to help my own baby.

I'd hold him. Rock him. Cool him down. Call his doctors. Take him to another appointment. Explain everything again and hope that this time someone could tell me what was happening.

So many times, no one could.

Jax would continue waking through the night screaming.

For the first three years of his life, there were days when Jax would scream and cry for hours, and we didn't know why.

I did everything I knew how to do to make him comfortable.

Then I'd lie down completely exhausted and wonder if I would wake up the next morning and find him gone.

They might see the wheelchair.

They might see the feeding tube, the medical equipment, or a picture from another hospital stay.

They might see a smiling family picture.

They couldn't see what I was carrying inside of me.

They didn't see me watching Jax's chest to make sure he was still breathing.

They didn't feel the panic that came with a fever or a new symptom.

They didn't hear the thoughts running through my head at 2:00 in the morning.

They didn't know how badly I wanted someone to tell me my baby was going to be okay.

Because nobody could.

Everything was hard back then.

Even leaving the house felt overwhelming.

When Jax finally got his wheelchair, I was so excited. But getting him anywhere still required so much work. I would strap his wheelchair to the back of my car and pack everything we might possibly need.

Winter was especially hard.

Cold and flu season terrified me because something minor for another child could mean another hospital stay for Jax.

Sometimes staying home just felt easier.

Safer.

So, I stayed home a lot.

And slowly, my world became very small.

I pulled away from friends and family.

I became isolated.

This was the loneliest time of my life.

The strange thing is, sometimes I felt even lonelier when I was around people.

Everyone else seemed to continue living their normal lives while our entire world revolved around keeping our son safe, comfortable, and alive.

I had family.

I had friends.

But no one understood what I was carrying.

And yet, I still felt abandoned. All I wanted some days was a simple text.

I became angry at life.

And I became deeply depressed.

I loved Jax more than anything in this world.

I just hated what this disease was doing to him—and what it was doing to all of us.

There was another part of this life that I didn't understand until years later—what it was doing to our marriage.

Trev and I were both trying to survive something neither of us knew how to survive.

We were young parents raising a medically fragile child, constantly exhausted, stressed, scared, grieving, and waiting for something terrible to happen.

My depression affected our marriage more than I realized.

I was struggling just to get through the day, while he had his own weight to carry.

I don't think he understood how depressed I really was.

There wasn't much of me left to give to anyone.

I was angry, withdrawn, exhausted, and hurting.

And Trev was hurting too.

We were going through the same tragedy, but we both went through didn't things.

Looking back, I can see how hard those years were on our marriage.

But here's the strange part.

Trev was also my best friend.

For seven years, it was the three of us.

Me, Trev, and Jax.

Us against the world.

Our marriage could be struggling, and somehow we were still a team.

We could argue and then sit beside each other in a hospital room terrified for our son.

We could both be falling apart and somehow still hold our little family together.

Life is weird like that.

Two things can be true at the same time.

Was there both light and darkness on this journey? Absolutely. Could there still be glimpses of joy and moments of pure happiness in the middle of all that pain? Yes!

And that was true about almost everything during those years.

As much darkness as there was, there was also so much light.

Jax was the light.

His spirit was innocent and pure. You couldn't be around him without feeling his love. His smile could change my entire day. A laugh could make me forget, even if only for a moment, how scared I was.

The tiniest milestones became a huge celebration in our house.

But I also watched him suffer and struggle, and there were times when watching him almost killed me.

That's what was so hard about our life. The light and the darkness lived right alongside each other.

I could experience moments of pure joy with Jax while carrying an enormous amount of grief and fear at the same time.

I remember wondering if I would ever hear my son laugh.

When Jax was around six months old, we were at Trev's parents' house sitting around the kitchen table talking.

Then, out of nowhere, Jax let out the cutest little giggle.

Everyone stopped.

Then he did it again.

And again.

My heart fluttered.

I teared up.

I can still remember that feeling.

For that moment, there was no Canavan Disease.

No doctors.

No life expectancy.

There was just my baby.

And he was laughing.

Those little moments became huge moments in our family.

Whenever Jax did something he was proud of—painting a picture, knocking over blocks, playing an instrument—his entire face would light up.

It was almost like he was saying,

Look at what I just did!

And we celebrated right along with him.

Then there was his cheeseburger grin.

That's what we called his biggest smile without showing his teeth.

God, we loved that grin.

Sometimes I could be carrying so much sadness, and then Jax would look at me with that cheeseburger grin and completely melt my heart.

Some of my favorite memories weren't big moments at all.

We'd lay Jax on the floor while we watched movies, and he'd scoot himself around, “talking” and making all kinds of noise.

He had plenty to say even though he couldn't say it with words.

Those ordinary moments became some of the most beautiful parts of our life.

There was no hospital.

No doctor.

Nothing I needed to fix.

I was just his mom, and he was just my little boy.

That's what makes this journey so hard to explain.

The light and the darkness lived right alongside each other.

I could spend the night terrified that something was happening to Jax and wake up the next morning to his cheeseburger grin.

I could grieve everything his disease had taken from him and experience pure joy watching him do something small that made him proud.

I could hate our circumstances and still love our life with him.

I could be terrified of losing him and overwhelmingly grateful that he was mine.

I could be deeply depressed and still experience moments of pure happiness.

Both things were true.

When Jax was 18 months old, he was sitting in his swing one morning when suddenly he turned completely blue.

I took him out.

His body was stiff as a board, and half of his face began twitching.

I panicked and called 911.

Jax was having his first grand mal seizure.

I sat in the back of the ambulance on the way to the hospital in Salt Lake, terrified.

Jax slept peacefully while my mind went somewhere completely different.

This is it.

This is the beginning of the end.

My baby is going to die.

At the hospital, they ran tests, but once again we were told there wasn't much they could do.

It was the progression of his disease.

I held him for hours, trying desperately to comfort him.

Eventually, we heard words that would become painfully familiar:

“Go home and love your baby. He doesn't have much longer.”

So we went home.

And we loved our baby.

And we waited.

Jax ended up in the hospital eight different times during those first three years.

Different complications.

Different scares.

But so often the same message.

Go home and love your baby.

He doesn't have much longer.

In three short years, we grieved the death of our son more times than I can count—

while he was still alive.

That became our normal.

Then the unimaginable occurred.

Jax was in a terrible accident and nearly died.

By God's grace, he survived.

After years of being told our son was going to die from his disease, we almost lost him in an instant.

Something inside me changed.

Life can always be worse, I realized.

I couldn't bear living in this misery anymore.

Something had to change.

I didn't know how to heal myself at that point in my life.

I didn't know how to love myself, choose myself, or take care of myself the way I eventually would.

Those lessons came much later.

I just knew I wanted to move forward.

Not move on.

Move forward.

Jax was still here.

We stopped focusing so much on how much time the doctors thought he had left and started focusing on the time we actually had.

We wanted to give Jax the best life we could.

We wanted to make memories.

We wanted to have fun with our son.

We wanted to live instead of sitting around waiting for him to die.

And slowly, that's what we started doing.

The disease didn't go away.

The fear didn't disappear.

I wasn't suddenly healed.

Our marriage wasn't magically fixed.

Life was still hard.

But we weren't only waiting anymore.

We found happiness in some of the darkest corners of our lives.

Somehow, after everything we had been through, 2019 ended up being one of the best years of our lives.

Life was our biggest teacher that year.

Looking back now, I can see just how much this journey changed me.

It stretched me, strengthened me, challenged me, and changed me in ways I never could have imagined.

A piece of the young woman I was before Jax's diagnosis was forever gone.

Eventually, a new version of me would emerge with a perspective on life I didn't even know existed.

Back then, I was simply a young mom doing everything she knew how to do to care for her son while carrying an enormous amount of grief.

That young girl had no idea life could get this hard.

No one could have prepared me for it.

But I also had no idea love could run this deep.

I didn't know you could grieve and feel joy at the same time.

That you could be terrified and grateful in the same breath.

That your marriage could be struggling while your husband was still your best friend.

That you could feel completely alone while also feeling like the three of you were us against the world.

That you could hate everything a disease was taking from your child and still find so much beauty in the life you had together.

Canavan Disease took so much from our family.

It took dreams.

It took milestones.

It took pieces of the future I had imagined for my son.

It changed our marriage, our family, and the way I looked at life.

But it didn't take everything.

It didn't take Jax's laugh.

It didn't take his cheeseburger grin.

It didn't take the pride on his face when he accomplished something.

It didn't take those ordinary nights on the floor together.

And it never took the love we had for that little boy.

Unless you've lived this life yourself, I don't know if I can ever fully explain what it feels like.

Maybe that's why I needed to write this.

Because behind the wheelchair, feeding tubes, medications, hospital rooms, and smiling family pictures was a life most people never saw.

It was exhausting.

It was lonely.

It was terrifying.

It was heartbreaking.

And it was beautiful.

Some of the darkest years of my life also hold some of my most precious memories.

That's the strange thing about this journey.

The light and the darkness didn't take turns.

They existed together.

And somewhere in the middle of all of it, we found happiness in some of the darkest corners of our lives.

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