There was a time in my life I took a “break” from social media. I personally no longer saw the need to read about other people’s every move or share mine. I was in contact with and saw the people I wanted to or used other means, like e-mail, text, this weird thing known as a “phone call” and believe it or not, I was then – and am still today – a fan of snail mail. I get really excited when a friend or some of my family from the older generation sends us a surprise. I felt satisfied with my “social contact”. However, after Mermaid was born the need to show pictures and events quicker, with those we didn’t see on a regular basis, led my husband and I to rejoin the Facebook frenzy on a joint account. I realized when I returned not only how much I missed seeing what was happening in everyone’s lives but being able to share in their joy.
Further down the road, after Mermaid’s diagnosis, my enjoyment of being back on Facebook turned into a necessity. It’s the place I found our support groups and began building relationships with fellow Nevus owners. Since deciding to start Mommy’s Mermaid social media has served as the place I identify who’s stories to share and has guided my family in many situations where we felt confused or nervous.
In staying with my commitment to help bring awareness and understanding to this disease I am always fulfilled to see others taking the opportunity to do the same on many different platforms. It’s such a brave act to share your personal story of being “different” or ask for help in times of need from complete strangers who may or may not comprehend the place you are in. Openly talking about what makes Nevus owners unique and special also runs the risk of putting yourself in a very vulnerable place with the public. To nobody’s surprise, I’m sure, there are still negative reactions to the way a Nevus owner may look and a lack of compassion for the way they feel, both inside and out.
I was beyond excited to recently see one of our fellow Nevus owner’s take a huge leap and get featured in their local newspaper. The Manser family from Townsville, Australia shared their story about their daughter named Hope through a feature article in the Townsville Bulletin.
My favorite line in the story is when Mom, Karyn said:
“Hope was born to stand out”
I could not agree more, to all you special nevus owners, you WERE born to stand out, and to show the world that being unique is ok.
Below is the link to their story and I hope you take a few minutes to not only read, but really absorb their message, their fears of their daughter being bullied and their decisions to approach life teaching her how to have the resilience and self-esteem to deal with said bullies.
I applaud both the Manser family and the Townsville Bulletin for shedding a small light on this beautiful little girl.
Thanks for walking with us today,