I still remember the busy autumn night when I met my eldest daughter, Athena, hoping to be in her classroom in time for her parents’ night. When I entered the room, everyone seemed to be staring at me. Several adults immediately stopped whispering to their children. A classmate shouted to her daughter, “What happened to your mother’s face?”
When my 6-year-old daughter looked at him quite frustrated and said, “This is my mother’s birthmark! Don’t be rude!”,
I was shocked and shocked. I started to explain. Many of the children whispered “Oh” and “cool”. She was playing with her friends again. It’s an understatement to say I’m proud of how she dealt with this situation.
I was pretty young when I noticed that the big mole on the face looked different from others. I always thought I was alone because it was judged immediately by appearance. The comparison with Batman’s supervillain Two-Face was unbelievable that I could find love. I was fortunate enough to meet my husband. Her husband saw me who I was, not what I looked like. And we fell in love.
I was overjoyed when I first learned that I was pregnant, but I was worried about how the world would judge my child. For many of us with Sturge-Weber Syndrome, pregnancy is not even an option. I was also worried that my condition would be communicated to the children.
I noticed how human beings judged me, and judged my husband for being with me and I didn`t need my youngsters to develop up with that social stigma. Both of my pregnancies and births had been similar to everybody else`s and after I held the ones little hands, and walked them to high school I felt like a normal mom.
When my girl was old enough to notice my birthmark and ask about it, I explained how unusual my special purple skin was. From an early age we talked about acceptance and never judged others by their appearance. With Athena, especially now that she’s a teenager interested in make-up, I don’t have to hide behind her makeup mask, so tell her why I don’t wear it Did. When my girl kisses my purple cheeks, I feel “normal” around them and their unconditional love.
Unfortunately, some of my fears have been revealed and I’ve seen my facial differences affect my children. My daughter was suddenly banned from birthday parties and overnight stays. Or, after my parents saw me drop my child, I found out that a particular child was no longer my friend. This is certainly unknown but speculative, but there is a more obvious reaction when an adult stares at me and unknowingly leaves me as if I were contagious.
Over time, my two daughters became my supporters. My 5-year-old Zelda loves to talk to her mom about her special purple skin. Thanks to them, I am more confident and strive to be a role model. Athena and Zelda are always there to support me in my advocacy for facial differences and other work in the community. I know they are more kind and resilient because they saw the discrimination I face.
When I was growing up, my mother was always there to support me-it became a crying shoulder when the tyrant was having fun. When I learned that I had two daughters, I realized that fate would be my strongest ally. Your view of the world is similar to mine. We see the world a little differently, with a more friendly and acceptable mind. As the saying goes, your daughter will be your best friend. I know what it will be for me!
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