Perfect v. Wonderful

I’ve been trying to think of some profound statement on which to end 2020, but all I have is this: We are still standing. (Well, sort of. Between the hours of 5:30 a.m. and 8 p.m. we are destroying, creating and just trying to keep each other from getting hurt, but at 8:02 p.m. we…

The Beat Goes On: An Update

This morning I sat in my daughter’s cardiologist’s office while he talked to me about what was wrong with her heart. My husband Ben joined us via Facetime and I held Ellie, who just wanted to hug. We were chest to chest, and I could feel her heart beating while the doctor pointed to the…

Implied Happiness

I read a quote online the other day from a woman who was giving parenting advice: Always smile when talking to your children so that they remember you that way. My husband put our daughter, Ellie, in the shower last night to get her clean. Every other time she takes a shower, we have to…

Extraordinary: A Typical Day in the Special Life of Kylie Purifoy

Outgoing and active Kylie Purifoy is always on the move. From working in the theater department at a local high school to volunteering with the dance and drama teams, she is no stranger to the spotlight. I met Kylie and her brother and talked to him about their relationship for the November issue of Little Rock…

Prenatal Testing and Down Syndrome

This piece in The Atlantic is long but worth the read. When I was pregnant with my first two children, I remember telling the doctor that I didn’t need the prenatal tests. I looked over and Ben and he agreed, saying, “It doesn’t matter. We will take care of the child no matter what.” When…

My Only Girl

“I am glad that Ellie is your only girl.” I hear that or a variation of that a lot. Honestly, I have thought it myself on occasion. The idea is that if Ellie had a sister, she would grow up trying to be like her. The fear behind it is that if her sister were…

What I Wish I Knew Then

Heather Honaker visited with four family members of children with special needs for this month’s special focus. They offered tips from their personal experience on what they did right in raising a special needs child – and what they wish they could do again. Here’s Heather with more: We got a Down syndrome (DS) diagnosis…

Extraordinary: A Typical Day in a Special Life of Lila Morrow

Young artisan Lila used one of her favorite therapy projects to begin her first business before most kids even think about starting elementary school. Introduce us to Lila.Lila is a vibrant and active 7-year-old girl who has Down syndrome. The moment she was born, our lives changed forever. We knew Lila would have Down syndrome…

Why can’t you be more like Ellie?

Even though she has an undesired, greatly feared disability, I sure do think, “Why can’t you be more like Ellie?” a lot. I was scared of her before she was born. If I’m being honest, I am still scared of her. I obsess about her Down syndrome making her seem less than everyone else. I…

Motormouth

I talk a lot. I think it is likely the thing that drives my husband most crazy about me. I always need to talk about ‘it’ – whatever ‘it’ is. I have a master’s degree in communications, for goodness sake. I spent a decade in PR and non-profit development building relationships that I maintain even…