I had dinner in Chicago with a family that has three children with Lamellar Ichthyosis. Denise and Mike – the parents of the children – had driven an hour one cold Sunday night to have dinner with me. We ate deep dish pizzas, talked and laughed and nodded in empathy.

The children and I talked about koalas, how we react to people staring, coping with bullies, whether there’s pizza in Australia, and how it’s better to surround yourself with a few close friends. I told them that their uniqueness is special and there aren’t many people like us in the world.

Michael, the oldest boy, doesn’t say much. But he told me he wants to be an NFL football player when he grows up. He has just started playing – his parents were worried about him, but have decided to let him do the sport he’s always wanted to do.

Aurora talked about being excluded and my heart broke. She said other children don’t want to pick her for school sports because of her skin. I could see her mum getting emotional too. Just awful. Denise said that girls are the most cruel – and immediately I thought back to the time when I was at school. It was so isolating. I just wanted one friend who would stick by me.

I told them all that it might be a long time away but things got better for me when I started to work and study. I found my tribe. I told they will too.

Matthew the little one was so beautiful, with his spiky hair, cute smile and infectious personality, he lit up the room. He was running and jumping and later on cuddled me and played peek a boo. He even held my hand. So sweet. We all sat down for photos and Matthew was so cheeky, giggling and wriggling all over the seat. One of our photos together shows him upside down and me laughing a lot.

But he covered his eyes when we took a selfie as he doesn’t like seeing his face. It was heartbreaking. If only he knew how gorgeous he is. (I remember that when I was a child I didn’t like posing for photos or seeing myself in them, especially when my face was scaly.)

I left overwhelmed with emotion – happy tears about how we all connected and had fun and hoping we will meet again someday. Eight year old Aurora asked me if she will see me again. I said I hope so, and encouraged her to write to me. She’s been sending me short messages via her mum’s Facebook, and she’s written a piece for Ichthyosis awareness month.

“The life of Ichthyosis is not fun but you can be good at some things that some people can not do. For one is like going swimming because you get really hot in the summer and maybe in the winter but it would be easier cause people like us get to go swimming. We people who have a skin condition like this have to live a harder life then you other people do. We have to keep people from staring at us so if you can be kind and do not do that it will make us children with this skin condition Ichthyosis more happier. If you do not stop staring at us you would hate to be us so please do not stare at us. So when we live we can not be happy because maybe some person got us mad by saying you look gross, you look ugly, or maybe you look gross get away from me. That’s what makes life so upsetting when people do not be nice to us and if you do be nice to a person like us that will make our day happy!”

Denise adds…

“I decided to add a few of my own thoughts about being a Mommy to kiddos with Ichthyosis….

I remember shortly after our oldest son Michael was born, the hospital calling in the social worker to talk with us. She had stopped by several times throughout Michael’s two week stay at the hospital and she and I had a few conversations during that time. One conversation that still remains clear in my mind is the one where she acknowledged my feeling of sadness, not due to what was physically going on with him at the moment, but for sadness and grieving over the loss of what we had such perfect expectations for within our son. Don’t get me wrong, he was and still continues to be perfect in our eyes. But all the things that make him perfect to us, his sense of humor, his intelligence, his kindness is not what the world sees in him when they first look at him.

This is something I still continue to struggle with ten years (and three kids with Ichthyosis later). For me, as a Mommy, it is by far the worst thing to deal with in regards to Ichthyosis. The world says “what really matters or counts is what is inside”, but everyone knows that is not what is really thought when seeing someone who looks “different”, whatever the reason or case may be.

Trying to raise children who look “different” and reinforcing in them that what really matters IS inside has become a huge challenge due to the constant staring and whispers that accompany us EVERYWHERE we go. So as we continue to live our life with Ichthyosis, I will continue to do my best to build self worth and compassion within my children so they continue to grow into caring individuals that can weather the storm and stay strong when the world says they are not “perfect”.”

 

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.