Seeing Her Value

Before my daughter Jessica was born, I had no intimate understanding of disability. I thought I knew all kinds of things, but truly I knew nothing.

Coincidentally, I also thought I knew all kinds of things about raising children. Turns out, I wasn’t very schooled in that area either.

These two areas of ignorance have more in common than you’d think. All the things I thought mattered about being a parent turned out to be a lot less important. And, all the things I thought I would hate about parenting, I could care less about.

Jessica was born with a neurodegenerative condition, pontocerebellar hypoplasia. She can’t walk, speak, or eat.

There are times when people stare at her, barely containing their distaste. The older generation will purse their lips, scolding us for taking care of Jessica in ways they don’t understand.

As her mum, I see a different side.

Jessica can boss, expertly. She has invented her own language, a drama queen full of sass, body language, and intonation.

She pulls tricks, poker faces, working our last nerve with intense amusement. She offers us her wobbly-grin comfort after a painful procedure. Giggles helplessly at Daddy. Sails out, chin up, proud as punch after she’s had a great day at school.

In our own small way, Jessica — and us as her parents — have all fought to change people’s perceptions. A person is not a disability. A person is a person.

Little things. We make sure she is always dressed beautifully, like the princess she is. Carrying four or five outfits everywhere we go, so I can change her when she vomits or has her bowels open all over herself, which is a negligible price to pay.

Little things. We interpret her until people learn to call her Jessica not Jess. We make sure we are funny, intelligent, and her character is prominent in any way we can. That’s who she is, who we are.

Little things. We encourage curiosity. People ask the most confronting questions, but they accept our answers wholeheartedly. I always think they might treat the next person with a disability they meet differently.

Little things. We are a popular case study for pediatric doctors and students because Jessica has a list of conditions that affect her completely differently. We hope to make kids with disabilities relatable and improve their medical care.

Sleepless nights. Hospital life. It’s not easy, being Jessica’s parents. The suffering, the one step forward, five steps back, the complete surrender of your own life so she can have a degree of quality in hers.

There is an endless learning curve in caring for a child like Jessica. You’re constantly banging your heart against the miserable defeat of not being able to completely protect your child.

Natalie Yates from Derbyshire is a mother of two: Jessica (9) and Liliana (7).