💔 Quality of Life: Rewriting the Narrative with Love and Fire

A LoTus M Mighty Blog Post

Hey there, beautiful soul.Welcome back to LoTus M Mighty, the space where we uplift, empower, and embrace one another on this extraordinary journey called life. If you're reading this, you’re probably seeking connection, encouragement, or maybe just a sacred reminder that you’re not alone. Let me tell you something straight from the heart: you are in the right place.

I’m Michelle Kulczewski—a proud mama of four, with my youngest son carrying an extra chromosome and an extraordinary spirit. My mission is simple but powerful: to create a space where you feel seen, valued, celebrated, and connected to a community that believes in rising together. Through this work, I hope to remind you of the light you carry—the one that has the power to illuminate the lives of those around you.

Today’s post is one of the most tender I’ve ever written. It’s raw, it’s real, and it’s necessary. Because sometimes, our stories don’t just echo—they scream through our bones. And in telling them, we turn pain into purpose.

The Moment That Shattered—and Reshaped—Everything

On January 24, 2017, we found ourselves in a sterile hospital room having a conversation no parent should ever have. Our son was just two and a half months old, and we had been preparing for a necessary heart surgery. We’d worked closely with a team of specialists, met with NICU doctors, and monitored his progress daily. We noticed changes in his breathing and feeding, and our instincts told us something was wrong. A cardiologist confirmed our fears—surgery would need to happen soon.

But what we weren’t prepared for was the moment my husband asked a simple question:“Why isn’t a heart transplant being considered?”

The answer that came back struck like lightning.

"Your son does not qualify for a transplant... because of his diagnosis. Because of Down syndrome. Because of what we define as 'quality of life.'”

Even as I write those words, I feel them all over again—burning, shaking, unraveling. In that sterile room, time stopped. My heart screamed: Not my child. You’re not talking about my baby.

A Sacred Vow Was Born

That day didn’t just break us. It ignited us.

My husband looked at the team and asked what we could do to change this—how we could ensure that no child would ever be denied a chance to live simply because of a diagnosis. The nurse’s response?"Change the law."

And we did begin that journey. But in that very room, something else happened. Something sacred.We made a vow.

We vowed to never let anyone else define our son’s worth.We vowed to give him a life filled with love, laughter, light, and joy beyond measure.We vowed to advocate louder, to cherish harder, to rise every single day and say:You matter. You are mighty. You are enough.

It became more than a response. It became a mission.

Redefining “Quality of Life” on Our Terms

Let them measure outcomes—we’ll measure belly laughs.Let them count limitations—we’ll count dance parties, bedtime snuggles, and the way our child lights up a room with his joy.Our quality of life? It’s defined by presence. By joy. By miracles measured in love.

You see, quality of life isn’t a number. It’s the wonder in a swing. It’s the warmth of your baby sleeping on your chest. It’s the strength in milestones you weren’t sure would come—but they did.

To anyone who dares to question our children’s worth based on expectations or labels—we offer this truth:

Quality of life is not what you predict.It is what we live—every day. Beautifully. Boldly. Unapologetically.

To the Parents in That Room… This Is Your Hand to Hold

If you're sitting across from a team right now—whether medical, educational, or otherwise—and someone tries to reduce your child to a chart or checkbox, I want you to hear this:

You are allowed to feel everything.You are allowed to be angry.You are allowed to cry.And most importantly—You are allowed to rise.

You do not have to have it all figured out. You just have to know this:

💛 You are not alone.💛 Your child is not their diagnosis.💛 Your love is mighty.💛 Your advocacy is sacred.

There is a tribe walking this path with you. I am one of them. And I will keep showing up—so you remember you don’t have to walk this road alone.

Let’s Rise, Bloom, and Stay Mighty—Together

Thank you for holding space with me today.Thank you for listening, for feeling, for allowing your heart to be open.

Even in our most heartbreaking moments, we bloom.Even when the world says no, we rise anyway.

If this post moved your heart, please share it with another parent who might need these words today. Let it be a reminder that we define our stories. We write them with grit, with grace, and with so much love.

Let’s rise together.Let’s bloom in our own rhythm.Let’s live boldly.And above all—let’s stay mighty.

With all my heart,Michelle🌸 @LoTusMMighty