When people ask what Brielle’s life looks like these days, I never quite know where to begin. The truth is — it’s a mix of beauty and heartbreak, laughter and tears, moments that feel both ordinary and extraordinary at once.

Brielle still smiles. She still laughs. She still finds joy in the smallest things.
And yet, behind every moment of joy, there’s a quiet ache — a reminder that each day we have with her is a gift we can’t take for granted.

Over the past few months, we’ve learned to live in the in-between — between hope and acceptance, between fighting and letting go. It’s not a place any parent ever expects to live, but somehow, here we are.

We try to fill Brielle’s days with life. She loves her mini verse toys, and opening them has become part of our daily routine. Every morning, she picks one out with such excitement, carefully peeling the packaging and revealing what tiny treasure hides inside.

It’s such a simple thing, but to her, it’s magic — something to look forward to, something that makes her eyes light up.

We read together. We tell stories. We have

family sleepovers, where everyone piles into the living room with blankets and popcorn, and we stay up late watching movies. Sometimes, she falls asleep halfway through, her small hand still resting in mine, her breathing steady and peaceful.

Her little friend came by recently with a bouquet of flowers — pink and purple, her favorite colors. The way her face lit up when she saw them… that’s a memory I’ll hold onto forever. For a moment, she wasn’t the girl who’s been fighting a disease for so long. She was just Brielle — sweet, funny, loved, and surrounded by people who care.

We even managed to go to the Halloween carnival this year. She was so worried she wouldn’t be able to go, and the thought alone brought tears to her eyes. So, we made it happen — wheelchair and all.

She dressed up, played a few games, and laughed with her siblings. She was exhausted by the end, but her joy that day made every ounce of effort worth it.

Then came Christmas, and we made it special. The lights, the decorations, the smell of cookies baking in the oven — everything was filled with warmth and love. We didn’t know what the next months would bring, but we chose to be present, to celebrate, to make memories.

There’s still so much laughter in our home. Brielle’s silly side shines brightest when she’s with her siblings. They play on the Switch, tease each other, and giggle until they can’t breathe. Those moments — they’re precious. They remind us that life, even when fragile, can still be full.

But of course, it’s not always easy. Brielle’s body is tired now. Her legs don’t work like they used to, and she spends more time resting. Some days she barely moves from her spot on the couch, other days she manages to scoot herself closer to her brother or ask for a story.

She isn’t in pain — and for that, I am endlessly grateful. But there’s a visible tiredness, a slowing down that’s hard to ignore. She’s comfortable, peaceful even, but I can’t help but see how much her body has changed.

And that’s where the hardest questions come in — the ones that keep me awake long after everyone else has gone to sleep.

We’ve been told by doctors that continuing

blood infusions will only “prolong the process.” That phrase haunts me. Prolong the process.

Because what they mean, of course, is prolonging her life — this precious, beautiful life. And I find myself asking over and over again:

If she’s not in pain, if she’s still laughing, still talking, still loving… isn’t the goal to spend as much time with her as possible?

But then the other voice in my head whispers —

at what cost?

It’s a question no parent should ever have to face. It’s the kind of moral, emotional, and spiritual weight that can crush you if you let it. There is no “right” answer. There is only love — and the desperate attempt to do what’s best for your child, even when every option feels unbearable.

People sometimes try to offer advice, or reassurance, or logic. But unless you’ve sat in these shoes, unless you’ve watched your child fade before your eyes while still finding ways to smile — you can’t possibly understand.

I don’t say that with bitterness, just truth. Because even for me, standing here, loving her, holding her, I don’t always understand.

There are moments when I look at her — the way her eyelashes rest on her cheeks when she sleeps, the way her hand fits perfectly into mine — and I can’t imagine ever letting go.

And then there are moments when I whisper quiet prayers, asking God to ease her tired body, to hold her close if He must take her home.

That’s the thing about living with a terminal illness — it changes the way you define “life.” It’s no longer measured in years, or milestones, or plans for the future. It’s measured in moments. In laughter. In the soft hum of a favorite song. In the quiet peace that comes from knowing she’s still here, still herself.

We’ve learned to find beauty in the smallest things — in the warmth of sunlight through the window, in the sound of her siblings’ laughter, in the way she smiles when someone tells her she’s strong.

Because she is strong. Stronger than most adults I know.

Brielle’s life right now isn’t what we ever imagined, but it’s still a life filled with love, warmth, and meaning. She has shown us how to slow down, how to appreciate, how to love fiercely and gently at the same time.

I don’t know what tomorrow will bring. None of us do. But today — she’s here. She’s comfortable. She’s laughing. She’s loved.

And for now, that’s enough.

If you’re reading this, please don’t try to answer the impossible question for us. Just hold space with us — in prayer, in hope, in love. Because the very fact that such questions exist is proof of how deep this love goes.

Every day we get with Brielle is a miracle. And until the very last one, we’ll keep making memories, opening minis, telling stories, and choosing joy — even when it hurts.

Because that’s what love does. It stays, even in the hardest places.