Ever Grey the Person
This January I had my sixth child, Ever Grey. As soon as the doctors handed her to me I knew something was different about her. Her eye looked like it was bulging and half of her face was dark red. The nurses assured me that it was probably just bruising but ran to find a doctor just to be safe. I wasn’t at all prepared for what the doctor was about to tell me. Ever was born with a unilateral port-wine stain covering half of her face. A port-wine stain is a type of capillary malformation, similar to a birthmark; however, because it’s vascular it can run deeper than just the skin. Most of the time a port-wine stain isn't a big deal but because of the location and size she would need monthly laser treatments starting right away because it can harden and cause deformation. Also, because of the location, there’s a high likelihood that the malformation would be on her brain which causes a a rare disorder called Sturge-Weber Syndrome. Children with Sturge-Weber can develop glaucoma, seizures, learning disabilities, paralysis, physical deformities, and a host of other issues. I cried for the first week after bringing her home from the hospital. Not because of the way she looked, she was absolutely beautiful, but because I was terrified of what the future held for her. Luckily, she had a great team of specialists that immediately put my mind at ease. They reminded me to enjoy my time with her because nobody can predict the future but I could never get this time back. They also prepared me for the fact that because Ever looks different we may have to deal with unwanted attention when we started taking her out, especially after treatments because it causes bruising and swelling.
Our First Outing with Ever Grey
The first time we took Ever out to a restaurant she slept in the carseat the whole time because she’s an amazing baby who rarely cries unless she needs something. As we were getting up to leave, the waitress came over and peeked in at her. She looked back at me with a frown and said, “What’s wrong with her face?” I don’t think she meant it to be mean, but I was really taken aback. I wasn’t prepared for the fact that strangers would feel comfortable asking me questions. My knee jerk reaction was to immediately put her blanket over the seat so nobody else could see her but after some thought I put it back down. I realized that wouldn’t be protecting her as much as it would be protecting myself. For the rest of her life she’s going to have to endure people looking at her. There will always be children asking questions and adults making comments. There may even be times when someone intentionally uses the fact that she looks different to make her feel bad about herself. Those are things that I won’t be able to protect her from. The only thing that I can do is raise her to be strong and to understand that being different doesn’t make her any less beautiful, intelligent, funny, or accomplished. I started looking for things that would empower her right away. Things that conveyed the message that we know, and eventually she will know, that she’s not the same as most other people and that we are just fine with that. I wanted something to show that we are proud of her differences and that not being the same as everyone else isn’t sad or bad but makes her special and unique.
Ever Grey the Company
Unfortunately, I could find very little to represent her which gave me an idea. I would create something just for her that would show the world how proud we are. That’s where my first idea of a polar bear with the port-wine stain onesie came from. I realized that if I feel this way about Ever at such a young age, there must be other children and parents who feel the same way so I started making more shirts to represent more children. Children who wanted to embrace their differences and let people know that they realize they’re unique and that they are proud of who they are. It was important for me to try to represent as many children as possible but also to add designs that were motivational and inspirational. Clothes that helped reiterate how important it is to embrace our differences and how special these children are.
Ever & Friends
I now have a collection of characters, Ever & Friends, who each represent a child with a different disability. I have several more characters coming within the next few weeks and plan on continuing to grow the line. I also have a Cute Tees collection that feature positive messages and fun sayings.
I also decided that a portion of whatever profit I make, if any, would go to the Sturge-Weber foundation. We may not know if Ever has Sturge-Weber for a while but the people who I have met that have it or are raising children who were diagnosed are some of the nicest most caring people I’ve had the pleasure of meeting. Right now every piece is made to order by me. I plan to add more to the collection in the near future and I sincerely hope that it helps show all children how special and important they really are.