One Year Since We Didn’t Come Home

May 25th, 2024.

I brought Myles to the ER at SickKids.

Between the two of us, we’d maybe had an hour of sleep.

He was up all night with a cold, and then the fever hit.

We drove through the rain. Sat in traffic on the Gardiner for what felt like forever.

It was a Saturday morning.

I packed a diaper bag. Threw in a toothbrush.

I thought we’d be home by Monday.

We didn’t come home for ten months.

It’s hard to put today into words.

But at the same time, it’s not.

Even with the steady ache in my chest as I write this, I get to sit here and hear Myles breathing peacefully in his bed.

There was a time I wasn’t sure that would always be a given.

The last 365 days split my life in two.

There is the before and the after.

Before SickKids, and after.

Before transplant, and after.

Before I knew how far a mother could be stretched physically, emotionally, spiritually…and after I found out. Because I didn’t have a choice.

Some of it’s a blur now. Like my brain blocked out parts of it to protect me. The IVs, the monitors, the days that melted into nights.

But every so often, something brings it back (thanks Facebook memories) and it hits me like a punch to the gut.

The first time he threw up blood.

The sound of the PICU doors locking behind us.

The doctor quietly updating another parent in the waiting room while I wonder when it’s our turn for an update.

And me, smiling through every conversation with the care team like if I just stayed positive, the floor wouldn’t fall out from under me.

People think when your child gets a transplant, the nightmare ends. That you’re one of the lucky ones.

And we are lucky.

But what most people don’t realize is that a second chance doesn’t come with a clean slate.

Sometimes it comes with complications.

With a gaping wound on your baby’s belly sealed by a pressure vacuum and direct access to his organs.

With ICU weeks instead of days.

With medications, follow-ups, setbacks, and trauma. Things that don’t just disappear when you leave the hospital.

And a body that’s healing in ways you can’t always see.

And a parent who’s doing the same.

I’m still trying to understand how I made it through.

The hospital wasn’t just a place where Myles lived.

It was where we both survived.

He faced more than any child should.

And I learned how to advocate. How to speak a language I never wanted to learn.

I learned how to read lab results, how to push for answers, how to function on two hours of sleep and caffeine and sheer fear.

I slept on uncomfortable day beds while nurses came in every hour.

I showered in bathrooms that didn’t lock.

I told myself “stable” meant “okay.”

People still ask me how he’s doing.

And I still say “He’s stable.”

But when do I get to say he’s “good”?

Did I ever say that before?

We came home in March.

Ten months.

Three different wards.

One major surgery.

More tests and procedures than I could ever count.

And finally—we walked through our front door.

People celebrated. They still do.

It felt like the big season finale. The happy ending.

But for me?

It didn’t feel like an ending at all.

It felt like stepping out of one storm and straight into another.

Like leaving a chapter I had finally gotten used to, only to land in a new one with different rules, new characters, and no guidebook.

And I know how strange it sounds, but part of me grieved the chapter we left behind.

As hard as it was, there was comfort in the structure. In knowing he was monitored.

Coming home meant I was back to being the first line of defence.

And I didn’t have backup anymore.

While I was carrying all of that, I was supposed to just… slide right back into real life.

Hold conversations. Go to work.

Pretend the pieces weren’t still scattered across the hospital floor.

But how do you go back?

How do you pretend it didn’t all happen?

How do you carry on when your body is still in crisis mode, but the world expects you to smile and say, “We’re doing great”?

Honestly?

I don’t know. I don’t know if I ever fully will.

I’m still figuring out how to live in this new version of life.

The one where Myles has a liver that didn’t start out as his, but is keeping him alive.

Where I double and triple every medication.

Where I wonder if “stable” is as good as it’s going to get.

Today marks one year since we didn’t come home.

And now, I’m sitting here listening to the silence of our house.

The kind of silence that used to feel like a luxury.

Sometimes it still makes me uneasy.

I don’t reach for the feeding pump anymore. Or glance at the monitor.

I don’t jump when I hear shoes in the hallway.

But the weight of it?

It’s still there. Just quieter now.

I don’t expect people to fully understand what we’ve been through.

How could they?

Unless you’ve lived this life, you couldn’t know.

And I wouldn’t wish it on anyone.

But I hope people can understand that healing isn’t linear.

That trauma doesn’t leave just because the crisis ends.

That joy and grief often live side by side.

They’re neighbours.

They host BBQs in the summer.

Their kids are in gymnastics together and have playdates on weekends.

Just because there’s joy and gratitude in making it through the storm—

doesn’t mean you’re not still carrying grief.

You’re allowed to miss the old chapter.

Even if it nearly broke you.

Because at the end of the day—happy or hard, hopeful or heartbreaking

You turned the page.

And we did.

We made it.