Hannah is almost twelve now, and she’s the kind of child who can light up an entire room just by walking in. She’s curious, mischievous, and full of laughter.
She is obsessed with shoes, loves broccoli more than most adults, and though she’s tiny, she’s strong in ways that still amaze me. She teaches me joy every day.
But Hannah’s life was never meant to be simple.
Years ago, I was told it would be “highly unlikely” for me to ever have children. That news broke something inside me. I remember grieving for the child I thought I’d never hold. But fate, it seems, had other plans.
When I first heard Hannah’s heartbeat and saw her on the ultrasound, I knew I would love her until my bones turned to dust. I dreamed of adventures together and she’s kept me on my toes ever since. She’s made every moment magical.
Everything seemed fine during pregnancy. But the moment she was born, our world changed. Doctors told us she had a cleft palate, two small holes in her heart, and a heart defect that couldn’t be repaired. My heart shattered. She was so tiny and fragile, yet she had already faced more than most people do in a lifetime.
But her courage made me stronger.
She couldn’t feed normally and had to be tube-fed. I remember watching other new parents carry their baby’s home, while I sat by her hospital cot, praying. After three long weeks, I finally brought her home terrified, but determined.
The months that followed were full of tests and uncertainty. Eventually, doctors diagnosed Hannah with Cornelia de Lange Syndrome CdLS a rare genetic condition. I remember feeling like the air had been sucked out of the room. My dreams for her future suddenly felt uncertain. I kept asking, why us? Why her?
But as time went on, that question softened into something else: Why not us? Someone had to be her mother. And maybe, just maybe, I was chosen for a reason.
Before her first birthday, Hannah had surgery to repair her cleft palate. But afterward, she went into respiratory arrest her tiny heart stopped. We thought we’d lost her. Somehow, she came back to us. That moment changed everything. It showed me the kind of fighter my little girl truly is fierce, resilient, unstoppable.
At two years old, Hannah still couldn’t sit up on her own. I felt helpless and desperate for support, so I reached out to a charity that offered Conductive Education for children with physical challenges.
With their help and Hannah’s sheer determination she learned to sit. And that Christmas, she took her first wobbly steps. I cried harder than I ever had in my life. It was, without question, the best gift I could’ve asked for. Holding her close, I felt complete.
As she’s grown, Hannah has continued to face challenges. She’s nonverbal, has autism, and lives with skeletal and sensory issues. She doesn’t always understand danger and needs constant supervision. But she’s funny, clever, cheeky, and stubborn in the best possible way. Her sense of humor can lift even the heaviest day.
We’ve never let CdLS define her. She’s done things most people wouldn’t believe — she’s been canoeing, walked alpacas, met celebrities, been in magazines, and even flicked Spider-Man’s eye once (that’s a story for another time!). She’s living proof that a “different” life can still be an extraordinary one.
There was a time I grieved for the life I thought we’d have. But now, I see how much richer this one is. I started a blog called My Kid Loves Broccoli to share our journey to remind other parents that life after a diagnosis isn’t over. It’s just different. It’s harder, yes. But it’s also fuller of love, laughter, and lessons I never would’ve learned otherwise.
Hannah has taught me more about courage, patience, and the beauty of small victories than anyone ever could. Our world may look different from the outside, but it’s brighter because she’s in it.
I once feared her diagnosis. Now, I see it as part of what makes her the incredible, unstoppable soul she is.
The world could learn a lot from my girl if only they’d take the time to notice.
