What My Son’s Ileostomy Has Taught Me

A journey of resilience, perspective, and unexpected lessons.

Feb 24, 2025

When I first learned that my son would need an ileostomy at just 3 years old, I didn’t know what to feel. Fear, worry, and uncertainty overwhelmed me. Would he be okay? How would this change his life? How would this change our lives?

It felt like uncharted territory, and I didn’t have a map. But as we’ve navigated this journey over the past three years - he’s 6 now - I’ve realised it wasn’t just about the medical challenges. It was about the resilience, strength, and wisdom that came with it - lessons I never expected to learn.

1. Strength Comes in Unexpected Forms

Watching my son adapt to life with an ileostomy has been one of the most humbling experiences of my life. At just 3 years old, he faced challenges that many adults would struggle with, yet he continues to show up with courage I didn’t know was possible.

It’s not just about physical strength but emotional strength - the ability to adjust, adapt, and move forward even when life feels unfair. He’s taught me that strength isn’t about never falling; it’s about how you rise after you do.

2. Normal Is What You Make It

Before this journey, I had a rigid idea of what “normal” looked like. But my son has shown me that normal is relative - it’s about finding routines, comforts, and joys in the life you’re living, not the life you imagined.

An ileostomy doesn’t define him. It’s a part of his life, but it’s not the whole story. He laughs, he dreams, he gets frustrated like any other kid. Normal isn’t about fitting into a mold; it’s about creating a life that feels right for you.

3. Patience Is a Superpower

Living with an ileostomy has its ups and downs, and so does supporting someone with one. There are days when things don’t go as planned, when emotions run high, or when it all feels overwhelming.

Through this, I’ve learned the importance of patience - not just with him, but with myself. Patience to navigate the hard days, to celebrate the small victories, and to trust that we’ll find our rhythm, even when it feels impossible.

4. Compassion Changes Everything

Before this, I didn’t fully understand what it meant to live with a chronic medical condition. Watching my son’s journey has opened my eyes to the invisible struggles so many people face.

It’s made me more compassionate - not just toward him, but toward others. You never know what someone is carrying, and sometimes a little understanding and kindness can make all the difference.

5. Joy Isn’t Cancelled by Struggle

There’s a misconception that challenges like this overshadow everything else. But my son has shown me that joy can coexist with difficulty. There are moments when his laughter fills the room, when he accomplishes something new, or when we share a quiet hug - and those moments remind me that life is still beautiful, even when it’s hard.

6. Advocacy Is Essential

Navigating the world with an ileostomy isn’t always easy. There are medical systems to navigate, misconceptions to address, and moments when you have to fight for understanding and support.

I’ve learned to be an advocate - not just for my son, but for anyone navigating similar challenges. Speaking up, asking questions, and challenging assumptions can make a world of difference.

7. Resilience Is Contagious

My son’s resilience inspires me daily. Watching him face challenges with grace and determination has made me rethink how I approach my own struggles.

If he can handle so much with such courage, then I can take on my own challenges with a little more strength. His resilience reminds me that we’re all stronger than we think.

8. It’s Okay to Ask for Help

One of the hardest lessons I’ve had to learn is that I can’t do everything on my own. Supporting my son has shown me the importance of leaning on others - friends, family, medical professionals, and even online communities.

Asking for help isn’t a sign of weakness; it’s a way to build a stronger support system for both of us.

9. Gratitude in the Small Things

This journey has taught me to appreciate the small things - an uneventful day, a moment of laughter, or a simple hug. Life with an ileostomy has its challenges, but it’s also full of moments that remind me of what truly matters.

10. Love Is Bigger Than Fear

Above all, my son’s journey has taught me that love is stronger than any fear I’ve ever felt. There have been moments of worry and uncertainty, but they’ve always been outweighed by the love I have for him.

That love gives me the strength to keep going, to keep learning, and to keep showing up, no matter what challenges come our way.

A Journey Worth Taking

Living with an ileostomy has been a journey - not just for my son, but for me as well. It’s taught me lessons I never expected, stretched me in ways I didn’t know I could handle, and opened my heart to a deeper understanding of resilience, love, and gratitude.

It hasn’t always been easy, and there have been plenty of moments filled with worry and doubt. But through it all, this experience has reminded me of the strength we’re capable of - both as individuals and as a family.

My son’s ileostomy doesn’t define him, but it has shaped our story in profound ways. And as I look at the amazing, strong, and joyful boy he’s becoming, I know that every challenge we’ve faced has been worth it.

To anyone walking a similar path: you’re not alone, and the lessons you’re learning - about love, resilience, and finding joy in the little things - are shaping you into someone stronger than you ever thought you could be.

If you enjoyed this post, please consider subscribing and supporting my work. Every subscription helps me continue sharing stories like this and building a space for connection and understanding. Your support means the world, and I’m deeply grateful for every single one of you.

Share Quietly Becoming