Below is the first post I ever wrote, I choose to keep it up as a reminder of where this all started. I now love to share other people’s stories and learn about all forms of nevus. By no means am I an expert but have come a long way in understanding what our future holds. When I start to question if I should continue this blog I come back to this post and remember the place I was in at the very beginning. Welcome, and if your new… start here!
Hello there, however you got here, I’m glad you made it. Welcome to Mommy’s Mermaid, let me tell you a little about our journey.
In 2013 our family was blessed with a beautiful baby girl. From birth I noticed this odd spot on her arm, multiple Dr’s assured me it was nothing, just a tiny birthmark and home from the hospital we went. As she grew, so did this tiny birthmark. Eventually filling her left armpit, around her ribcage and down her arm onto her hand. Now it didnt resemble a birthmark at all, more so a fungal infection. Multiple creams and a perplexed primary care Dr. Later we landed in dermatology.
I will never forget how calmly I was told that what my daughter had was called a nevus and it had no cure. A type of birthmark that could potentially take over the left side of her body and to be conscious of something called a wilms tumor. Keep it moist, avoid harsh soaps, see you later. I was so fixated on the fact that it would be there forever that I didnt ask the questions I should have.
We left and went for lunch, I got out my paperwork and googled the diagnosis shown of “melanocytic nevus” and a wilms tumor. If your not familiar with either, as I was not, take my word for it, what begins to pop up is a parents worst nightmare. Cancer, cancer, cancer. I felt sick, confused, sad. Why was it taken so lightly? Whats going to happen now? I immediately emailed the Dr. Who said a modifier didnt populate and what she had was not melanocytic but a linear epidermal nevus. Better but still not good.
I cried a lot in the following days. Sometimes with my family, sometimes alone. I thought about what the kids would say in school, would she wear a swimsuit when she was older, what about her prom dress? Would she develop kidney cancer, how would I know? Will she be tough enough to handle the vain criticisms I knew lay ahead? My anxiety’s plagued me. I searched night and day for anyone like me. Another Mom who felt sad or scared, a positive story about someone in adulthood with this disease and time and time again I came up empty handed.
I researched and did my due diligence on the disease and made a decision right then to start raising my daughter not to be ashamed of her “birthmark.” I jokingly said they were special scales she got to keep from when she lived in the ocean as a fish. Hey, she does love water! A friend said can’t you at least make it something better than a fish? Like a mermaid? and it stuck. Her special scales from when she was a mermaid. Mommy’s Mermaid.
I wanted to create a place for people to come for support. A place we can talk about products that have or have not helped, challenges and successes. A place where we can help eachother understand more about the disease and feel safe. A place where families like mine can find eachother just as I needed so badly in the beginning and am sure I will need again throughout our long journey. I pray for those who’s nevus has resulted in surgery and or cancer or left them feeling alone or insecure. Please know, you have a friend in us.
I hope in time to gain followers, strength and knowledge as I publicly share our walk down this road.
Your Truly,
Mermaids Mommy
Mommy's Mermaid 
Thank you for sharing your story! She is very lucky to have a mom like you. I wish I had been called a mermaid when I developed psoriasis as a toddler, that is genius!
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Thank you so much for sharing your story! She’s the cutest mermaid I’ve ever seen 🙂
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Thank you so much for re-posting this! Much appreciated!
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Maria!!! You have always been a wonderful woman and now and even better mommy!! This story makes me cry and smile with pride. We love our kids no matter what happens!!!
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Thank you Sarah! Such a nice comment, I hope you follow our journey, when I have time I plan to write about the many beauty/skin products that may be useful and I know thats up your alley 🙂
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Thank you for sharing your story. My granddaughter has a very similar nevus under her left arm pit. She is bi-racial and her nevus is dark and raised. I posted a picture on the Nevus Outreach page. My name is Mildred Harrington and her name is Kristina and she is 9 years old. The nevus has not grown or changed recently but we have scheduled an appointment with Dr. Bruce Bauer in Chicago to have it checked out. He is a pediatric plastic surgeon. We are also seeing a dermatologist. At the age of 9, she is very self-conscious and I am always careful to buy her clothes with 3/4 sleeves.
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Thank you for visiting Mildred. I will go look at the picture, I’m curious – have you guys done the C02 treatment yet? I fear the day my little one becomes self conscious, so heartbreaking. Kristina with a K is my middle name 🙂 – Kristina is lucky to have you outreaching and researching for her.
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And what a beautiful Mermaid she is 🙂
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Your story made me cry. The part where you explained how you came up with “mommy’s mermaid” got me. And I’m glad you’ve come to the realization that there is NO shame in her scars or marks, and I think you’re gonna be surprised when you see how well she handles it when she is older. Like in most cases, it’s usually the parents that need more comforting than the child. If you take anything away from us meeting, please remember one thing… Children are nonjudgmental and resilient, it’s only as they get older do they begin to doubt themselves or their self worth, and it begins because of other people’s remarks. That’s where you come in. You MUST treat her marks like it is NO BIG DEAL NOW that she is still forming her ideals of the world. And never point it out or continually try to hide it with her clothes… She’ll pick up on that. In fact, do the opposite. Put her in sleeveless tanks, tell her how beautiful her hair looks today with that headband she picked out all by herself, and don’t pay any attention to her marks in front of her. Even if it’s hard for you to do that, what you’re doing is teaching her there is nothing abnormal or different about her, she is a beautiful little girl just like everyone else. And when people ask you in public about her marks and she is listening, answer it with no strain in your voice. “Oh that? She was born with a condition called nevus, it’s unfortunate sure, but it doesn’t seem to effect us at all, in fact she is one of the happiest little girls I know.” You don’t realize it, but it’s that attitude she will take with her as she grows up and goes to school, and it is that perspective that’ll shield her from any hurt or embarrassment. She will be so confident that she will shock you and make you so proud, and she’ll even end up teaching you a thing or two about life.
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I have been researching for weeks about my sons condition ever since the Dr said that the “brown rash” looked like ILVEN. He just turned 6 this year. After reading your blog, I feel like he has LEN too. Thank you so much. You are a blessing to all who is affected by this rare condition.
– Mommy of a very sweet 9 yo boy from the Philippines
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I meant 6 yo! Hehe
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