11 Years Down the Road of My Daughter’s Diagnosis


This afternoon, a little past 4, I’ll think about this day 11 years ago when we learned that our little girl was going to walk down a different road.

I have never felt sadness like I did that day.

Eleven years down the road, this child is a source of joy, inspiration and unconditional love. She can put a smile on anyone’s face. Watching her this past weekend with all the visitors we had was a testament to her ability to touch lives all over.

It’s a tough road to walk some days, and we may slip off onto the grass now and then, but I wouldn’t give it up for anything.

Daddy loves you, Jordan.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Find this story helpful? Share it with someone you care about.


Related to Uncategorized Disorders

My Sister Listened as My Daughter's Heart Stopped Beating. Then She Saved My Son.

My sister Sadie was the rare 5-year-old who knew she wanted to be a doctor. That or “a bag lady.” (She thought the term referred to ladies who collect handbags.) The doctor dream stuck, and for most of my childhood my sister would “practice” her medicine on me when I was sick. She would gingerly [...]

Why a Compliment About My Eyes Was So Hard for Me to Believe

Whenever I hear or read the words strabismus or infantile esotropia, my heart stops and a pervasive feeling of numbness runs through my entire body. Immediately I know I’m different in a way that’s not good. I’m alone and vulnerable in my state of physical and pathological difference. It seems like I am the only [...]

When People Say 'You Feed Her What?'

“You feed her what?” The hospital dietician looks at me surprised, a vague air of concern crossing her face. She’s been called in because the nurse didn’t understand my answer to his question about what my daughter, Esmé, eats. “Esmé gets a blenderized diet through her g-tube,” I say, slowly. This isn’t my first rodeo, [...]

41 Little Things Special Needs Parents Will Never Take for Granted

For parents of children with special needs, small moments mean everything. When you have a potentially complicated road ahead of you and your loved one, you learn to appreciate what’s right in front of you. We decided to ask our readers what things they’ll never take for granted, and here’s what they had to say: 1. [...]