I met DeDe (and her cousin Kara) in New York last August, over cocktails and a vat of fondue. DeDe’s two year old son Evan has Harlequin Ichthyosis – considered the most severe form. Evan is a little cutie! On that sultry New York night, while we all compared paraffin-soaked notes (not literally – how GREASY would that be?!), DeDe, Kara, Mum and I talked about much more than Ichthyosis.

(DeDe, Me, Kara, Mum in NYC, August 2012)

 

We became firm friends and I recently spoke to her over the phone. I can’t wait to see her again, and to meet Evan of course! DeDe has a blog called Our Young Warrior Evan and does an amazing job of raising Evan and awareness about Ichthyosis.

“My life completely changed the day my son was born. As most lives change with the welcoming of a child into the world, mine was a change I had not expected. Doctors gave us a diagnosis 2 days before my son was born but I wouldn’t believe them. They said that Harlequin Ichthyosis (HI) would be the “worst case scenario”. Doctors have been wrong before so I would not accept what they had told me. It wasn’t until we got the confirmation in the operating room when my world really changed.

Having a few days before his birth did give us time to research. It was information that I was not ready nor willing to hear. Three years ago, the amount of information available about HI was limited, though the FIRST Foundation seemed to have the most accurate and up to date info about it. Reading things online just made things more stressful so I chose to dismiss it until my son was born. And on that day I do not even remember shedding a tear. Why would I? I would never believe that my child would not survive. It was hard to even fathom the fact that a severe skin disorder could take his life.

Having the nation’s leading expert on Ichthyosis there for Evan could have subliminally eased my worries. Having a diagnosis days before and being prepared in the OR for a Harlequin foetus probably saved his. But by staying positive, not giving up hope, and ignoring all of the negative statistics is what kept me strong. How could I sit there and sob? My son was the one in physical pain fighting for his life. I wouldn’t let myself cry, I wouldn’t let Evan know that I was terrified. How could Evan feel loved and safe if I wept over his isolette? He needed to know that I was strong and needed to feel my positive energy.

I ordered anyone who came to visit Evan, during his 58 day NICU stay, that they were not allowed to cry in front of him. I remember telling my best friend, “If you are going to cry do it now because I only want positive energy surrounding Evan.” I know that being in one of the best hospitals in the country, with Ichthyosis experts, and expert Neonatologists and nurses are what kept my son alive. But I can’t help to think how our positive energy gave Evan the will to live.

I am not going to lie, taking care of Evan is a challenging job. Three years later we still have the same skin routine, which is meticulous and exhausting. My husband and I have become obsessed with keeping Evan’s skin in the best condition possible. I guess it is a good thing to be obsessed about especially since I think the “best condition” equals comfort.

Evan’s skin is bright red. You can imagine some of the stranger encounters we have, specifically in the summer. Many people ask “Is he sun burnt?” “Does it hurt?” And my answer is always no & no. We work so hard on Evan’s skin so he stays comfortable. If he was in pain I think he’d let us know. It just shows how important skin maintenance is because I cannot think of a time where Evan was ever in pain from his skin. Obviously cuts or fissures may not feel good but he does not hold back when making a dive south for his boy parts even when there is a fissure down there.

Evan is my young warrior. He is a fighter. My life did change when he was born. I became a mother. I became a Harlequin “expert”. Though this is not what I had envisioned life would be like with my first child, it is a life I enjoy and treasure. Evan has opened my eyes even wider than they already were. I have always been accepting of others especially those with a visible difference or disability but having Evan in my life has really taught me what acceptance is. He has made me appreciate the little things in life and has moulded my character into a strong, resilient, nurturing and accepting individual and mother.

 

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.