Having my first child was not the experience I had envisioned. Thoughts would travel through my mind, while pregnant, about what he would look like. Would he have my nose? His dad's eye's? My ears? His dad's lips? Not once did I ever think about his skin. Why would I? Ironically enough, sometimes I would think, what if he looks 'different'? And I remember not being too worried about it. Ideally, no, I didn't want him to look 'different' but was it my biggest worry or concern? No.
Once Evan was born, the intensity put my 'mommy mode' into overdrive. It was difficult not knowing what my child looked like or was going to look like; not only because of the armor of skin that he was born with but from all the tubes, pads, and dressings that covered his body and face. And still his appearance was the least of my worries during those early NICU days. Survival, was what I was focussing my energy on. But it was hard for me to see other "beautiful" and healthy babies, especially in the hospital that first week. When I say "beautiful" I'm referring to their skin. I definitely had some envious moments right after he was born. When Huggies, Gerber or Johnson & Johnson commercials would come on, the only thing I would look at was the 'perfect' skin each baby had. During this time, I was a little worried about what people would think or say about the way Evan looked. Which was one of the main reasons why I never shared his picture with anyone, until he came home.
In my arms for the first time
I remember that once I was able to hold Evan, I would imagine what it would be like to put his cheek against mine. I wondered what it would feel like or if it would feel 'normal'. At that time, I was not allowed to even touch him with a bare hand. But it was becoming very obvious to me that I was just focussing beauty around healthy skin. Yet, for years I had never been concerned about physical beauty? The shock and awe factor of Evan's condition had my perceptions thrown off especially since it was something I could have never manifested in my head.
About two weeks after Evan was born, my brother came to the NICU to meet him for the first time. The first thing my brother said was, "He is beautiful." His words struck me like lightening. Beautiful. It was the first time I heard anyone call Evan beautiful. All of Evan's facial features were manipulated by the thick, tight skin. His nose and ears were two dimensional, his mouth was stretched open and his eyelids were flipped 'inside-out' fussing his eyes shut. It dawned on me that I was in a fog and that physical beauty did not define if you were truly beautiful. As Evan progressed, his appearance changed dramatically. He literally was emerging from a chrysalis and becoming the beautiful butterfly he still is today.
Having Evan has changed my life. Only for the better. Not only has he made me a better person but now I know that I really serve a purpose on this lovely planet. He has made me realize what the importance of beauty is in my life and what 'beautiful' really is to me. Being beautiful encompasses all that you are. It is your soul, your personality, your being, your attitude. Appearance can be a part of what some people consider beautiful. There are many people in this world who have beautiful looks. There are many people on this earth who have beautiful skin or beautiful hair. And there are many people on this planet who are just straight up BEAUTIFUL in and out.
One person in particular is Carly. Carly is one of the most beautiful people I had the pleasure of meeting. Carly is Australian and I was fortunate enough to meet her in NYC, while she was traveling. Carly is friendly, honest, motivated, and very positive (one of my favorite qualities). Carly is an appearance activist, writer, blogger, and TV presenter. She has an amazingly positive spirit and is truly beautiful. She does so much good for the world by raising awareness and sharing her inspiring thoughts, beliefs and opinions through her blog especially in regards to one's appearance. Her blog posts are very inspiring and give you an idea of what it is like, for her, to be living with ichthyosis.
"...I am a successful blogger, mainly focusing on the challenges and triumphs of living with a chronic illness and a visibly different appearance. My blog has given me a respected voice that I may not have found in real life. Unlike the trolling that happens online, my blog has been the source of love and respect that I often don't get walking down the street. My blog has been my vehicle to tell my own story in my own words..." Carly Findlay: "I couldn't handle looking like you"
I have nothing but an enormous amount of respect for her with all of the accomplishments she has made in her life. Her view on life open's my eyes, especially since I agree that living with and spreading positive energy is the most rewarding way to live. Check out her BLOG to read more.
In this country, the social media puts a lot of pressure out there in regards to beauty and being beautiful. Beautiful, in the media's eyes, are women that are thin with 'perfect' skin, hair, looks, & body. With these perceptions of what beautiful is, makes a lot of people, primarily woman, compete and compare themselves to this 'standard of beauty'. Though there is nothing wrong with wanting to look your best, but there are many woman who take their physical beauty for granted. For example, I found this television series from the UK called Beauty & the Beast: The Ugly Face of Prejudice. I found this, specifically because it features Nelly, the oldest person in the world living with Harlequin Ichthyosis. It is a very interesting video. Nelly and a beauty model spend 2 weeks together to share their opinions on what 'beauty' is and the importance of physical beauty in ones life. Nelly is such an inspiration and was incredibly brave to take part in this documentary. Nelly believes that you should 'live life to the max and not let anything get you down'. It is remarkable to see how different one person lives than another and how some people take their appearance for granted. There are four parts to the youtube version. If you have the time, I suggest you watch all four parts.
Apparently this youtube video is no longer available.
Now, this series looks to only be available via download.. sorry..
Now, this series looks to only be available via download.. sorry..
Everyone has their own definition of what beautiful is to them and the importance of physical beauty in ones life. It is completely natural to want to feel beautiful as long as it does not consume your soul. Our society and the public have not made it easy for those who look physically different. Hopefully one day, judgments will not be made upon others who have a unique appearance or are not up to the media's standards of being beautiful. Because Evan is certainly 'Beautiful to Me'.