I first met Ainsley and her husband in January 2015. Her little girl has Ichthyosis. We chatted for hours – exchanging anecdotes and advice. I finally met her beautiful daughter just before our wedding. Oh my the cuteness! The week before our wedding, Ainsley sent me a video of her daughter blowing me kisses for the big day – just beautiful.

Ainsley has written an eBook called True Blue Hand that you can download for free. It’s a great resource to explain appearance diversity to children. The link is below.

Today, Ainsley has written a beautiful piece about kindness. I nodded when I read this line: “the approach of others is the biggest negative of having Ichthyosis.”

Here’s her story.

Rethinking Kindness by Ainsley Kyder-Gould

“The nurse ushers me to the chair to have the first of three needles to check if my gestational diabetes has calmed post pregnancy. As a first time mother, I proudly sit next to my precious and most beautiful new born daughter, who is content and sleeping soundly in her capsule under the blush pink muslin – that like so many other things we bought in excited anticipation of her arrival. I am so happy.

The nurse starts to chat with me as she is preparing the needles.

“May I take a peak?” the nurse asks referring to our little sleeping princess.

“Sure” I say with the tone of a proud first time mother.

I love that people love babies and I love that I am now a part of that world.

The nurse gently lifts the muslin, as to not wake her. Un-expectantly she recoils, dropping the muslin and stepping back. “What is wrong with her?” she exclaims in reaction.

“Nothing” I reply.

“But she is all red, is she sunburnt?!” the nurse quickly responds.

“She has a skin condition but there is nothing wrong with her” I say calmly.

“Oh, that is sad. Think of how she is going to be bullied at school, it’ll be horrible!” continues the nurse in a surprised tone, believing that her response was in some way sympathetic to me.

I kept calm because I confidently did not share her vision.

My reply to her was simple, “We choose not to see it that way”.

I left the appointment deeply thoughtful and hurt by the apparent unkindness. However, this was the first of many incidences with adults and children alike. Fuelled by the distress of the world my daughter would grow-up in, it opened up many questions that occupied my mind for several months. There clearly was a disconnect in how I saw my daughter, who just happened to have a rare skin condition, and how other people saw her, our situation, and how they responded.

Why do people respond in this way? Have I also, through some misguided belief ever responded in the wrong way? The truth was yes. While I have never been as tactless and would consider myself a kind person, I had to admit that prior to my own personal experience with my daughter I would approach these delicate situations behind a polite façade. Really what I was thinking was “you poor thing” and my heart would break for them.

This self-reflection led to better questions; why don’t people know how to deal with appearance diversity? Why do we wait until we arrive in these situations to only struggle through them? We often offer some form of pity and seriousness like it is relevant or even appropriate. Knowing now, as a mother of a perfectly unique and most beautiful child who just happens to have Ichthyosis, the approach of others is the biggest negative of having Ichthyosis.

The truth is, without Ichthyosis we wouldn’t have our little girl. It’s not who she is but it is a piece of her. So naturally we choose to embrace Ichthyosis. We must take the road less travelled and most people who have some form of uniqueness do too. Although we wouldn’t have chosen it for our daughter – many good things come from a crisis. We can often think “I would never do that…” but until I truly reflected only then did realise I honestly didn’t have the right mindset. I now approach any kind of uniqueness with a smile and an open mind, focussing wholly on the person not the diversity.

Meeting or interacting with someone with diversity of appearance may be a one or two time experience for you or your child but for that person it is every day that they are dealing with the unkindness. I think it is fair to expect we can all live our lives focussed on who we are and not what we look like, and with this in mind we may all benefit from a little preparation to ensure we put our best foot forward.

I can never fix my daughter’s condition, but I believe I can change how the world deals with diversity of appearance. This was my impetus to create True Blue Hand. True Blue Hand is the tale of a little girl name True who happened to be born with a blue hand. The book is an excellent way to begin dialogues with your children about how to approach people with uniqueness in a curiously kind way. The book is available for free download from www.truebluehand.com and we have started a kickstarter campaign that you can contribute towards to raise funds so that we can print and give away copies of the book to schools, libraries and hospitals in the community. Follow True Blue Hand on Facebook to get updates.

Read more Ichthyosis Awareness Month posts here.