From our family to yours… Happy Easter!
Hoping the bunny found your house, you enjoyed family and remembered what today is really about.
Thanks for walking with us today,
Mermaid’s Mommy
It’s been cold and rainy (as expected) here in the PNW and we even had a weekend filled with snow. The weather let up this morning and allowed us to finally get outside for a bit. While on a walk with my Mermaid we took in the beauty of where we live and I thought about how great January has been.
With some additional time off from my normal job (though some of that was for a sick kiddo, which doesn’t really count!) I have been able to put more focus into my 4th child, Mommy’s Mermaid; and the numbers have shown. Nearly 1,000 people stopped in to see what was going on. Additionally I was able to respond to more emails and calls (sorry it took me so long to get to some of you!). I connected with a new Nevus group, met a fellow Nevus owner in person and secured a few exciting leads on future products and trials. It really proved to me that the more time, love and effort put forth, the more I will receive in return.
I want to thank everyone for helping me start 2016 off with confidence in our site and ideas out the wazoo! If only I had 2 of me, no 3. Ya, 3 would be good.
Coming in February I will have an update from Yale School of Medicine, A fellow Nevus owners story, and a new trial. If you have a specific interest you would like me to write about or would be willing to let us share your story on our platform please contact me.
Happy Sunday, hope you enjoy some snapshots from our walk today!
Thanks for walking with us today,
Mermaid’s Mommy
What’s to come in 2016?
As we tread towards our first full year up and running we want to give you an idea of what’s to come, If you are new to us and seeing this for the first time, I encourage you to read the very first post on our page “A tale of scales” and see what this venture is all about. Here is part of our line up.
-Epidermolytic hyperkeratosis.
Exam demonstrates aconthotic and hyperkeratotic epidermis with focal dyskeratosis. The differential includes linear epidermolytic epidermal nevus and epidermolytic acanthoma.
So what does this mean? Officially, this means that Mermaid has linear epidermal nevus, which occurs in 1 out of 1,000 people. However, the rare subtype of epidermolytic hyperkeratosis only occurs in 1 out of 2/300,000 people worldwide. We are going to dive further into what this truly means long term.
Whew… looks like we have a lot to dive into!
We want to thank each every one of our readers and followers for spending the last 9 months with us, you have changed our world and given us strength we may have never attained on our own. If you would be willing to share your pictures or stories for others to see we would love to hear from you and feature you one month this year. I remain committed to understanding all forms of Nevus and continue my personal education to speak factually about it. If you are not yet following us, it’s easy, either change the view on your mobile phone to desktop view or from your PC go to the lower right hand corner and click follow.
Thanks for walking with us today,
Mermaid’s Mommy
It’s crazy to think that I started this project as an outlet for myself, a place to journal and maybe, just MAYBE be a place for one or two other people to land while feeling lost; as I was.
In 9 short months people stopped by 6,500 times to see what we were up too. Thank you all for your interest and support. You will never know how much it means to us and we hope to double that in 2016!
HAPPY NEW YEAR!
Here’s an excerpt:
A New York City subway train holds 1,200 people. This blog was viewed about 6,500 times in 2015. If it were a NYC subway train, it would take about 5 trips to carry that many people.
As you may or may not know, the Pacific Northwest has been under a stream of storm systems causing flooding and power outages. I have been on a 2 day staycation and without power for the duration of it. Needless to say… I have been disconnected.
Mermaid and I went for a short drive up our road to check out some of the damage. The power lines must have felt festive because they managed to wrap themselves through the trees like Christmas lights. We could hear generators running in the distance and saw neighbors along with PGE crews working diligently to cut and move downed trees.
Outside of our drive; my dimly lit, slightly chilly home is my whole world. As Mermaid naps I sit writing in my trusty notebook by a lantern . (To be fair I am finally getting this typed up as I get a pedicure) It may sound far from ideal but being unplugged from the modern world got me thinking, my stress level is nearly non-existent. Without the constant stream of e-mails, texts, tablets and tv’s going; my focus has been on the simpler things in life.
Building castles, making shadow puppets, wrapping presents, reading, writing and reflecting. Part of that reflection has been pondering what initially caused all my anxieties around Mermaid’s disease? Yes, the initial diagnoses left me saddened but it wasnt until I started surfing the internet that I became so fixated on the potential negative effects of her disease that my fears were magnified. As I watch my seemingly happy healthy child live almost as normal a life as anyone else I think back to those first days. What if I accepted her diagnosis and left it at that, never looked anything up? Its funny, working in the medical field I am fully aware that turning to the internet for answers is one of the most detrimental things anyone can do, yet I did it.
So I wonder, had I been unplugged from our modern world at that time, would I have gone racing to the nearest book store or library looking for medical journals in search of cures and answers? Maybe, but maybe not. Maybe I would have accepted that first short visit as the end of our story and had the faith to blindly walk this path. I suppose we shall never know, and for that, I am thankful.
We live in a world where being uplugged is rare ,and for some, never happens at all. When my power returns I will be inundated with emails, fb alerts, picture texts and emails. This is a good thing, it means I am loved. Ok, maybe Amazon Prime doesn’t LOVE me, but they certainly want to make sure I don’t miss the next big deal!
I was built to find answers, I say I am thankful for not being a part of the unplugged world because I am one of those people constantly looking for logic and fixes. My need to have a direct answer to something has been both a negative, and positive in my life. In this case, I see it as a positive.
We all know this disease is somewhat manageable and the likelihood of one of those more severe complications is slim; but on the chance it occurs, I plan to be prepared and educated for what that might look like.
By means of the information super highway that provides me a road map of every potential route, through your stories and all our experiences I will continue to search for those answers and truly hope you continue to do that with us.
Until the power returns and my anxieties slowly creep back, I will enjoy the quiet. I will sit and listen to each raindrop hit the roof, each crackle of the fire and enjoy my Mermaid without distractions.
Where I may not be built to always be unplugged, I must say – I am enjoying it. I challenge both myself and all of you to unplug for a while and see where it takes you. Then rejoin the world and stop in to tell us what you did!
Stay dry my friends…
Thanks for walking with us today,
Mermaid’s Mommy
This morning my husband woke me to tell me that the ground was covered in snow, he knows I love that sight. It made the morning peaceful and magical. As Mermaid and I listened to Frank Sinatra on the way to school with flakes falling; I glanced back at her in my rear view mirror gazing at the snow-covered trees and thought to myself, Happiness.
I spent the past few weeks writing down all the moments in my day that made me go Ahhhhh…. those times something really struck me as a moment of gratitude. My list is big to say the least; coffee, warm showers, my readers, my Husbands strength, parents that live close, co-workers that thank me when they don’t need too and so on. It’s certainly proof in itself that I truly am blessed, but towards the middle of the list it says “CLOSURE”, I remember the day I wrote this and I think looking back on my year, closure is absolutely the thing I am most grateful for throughout this chapter in my life.
I speak very little about the struggles I have faced both physically and emotionally over the past 4 years. It hasn’t been all bad, don’t get me wrong, there have been amazing times as well, but a little more difficult to navigate. To save you from a novel I will share the lowlights of this time. I use to work for an extraordinary Physician named Dr. Andrew Lum. Someone I considered more of a Father figure than a co-worker. He taught me skills beyond my ordinary reach, compassion and life lessons I use to this day. He had this infectious laugh and he and I often got carried away in our jokes and joy. Work didn’t feel like work with him, he changed my view of medicine and what it means to help people. Andy fell ill in the fall and was off for a short while as they attempted to find a cause. On Dec 5th 2011 I received a message from him that he would be returning to work that following week. That was the last normal conversation I ever held with Andy; and the beginning of many difficult changes for myself.
Shortly after that message Andy was placed into a medically induced coma, he had complications from a disease called myoendocarditis. Multiple clots, aneurysms, brain surgeries. He never returned. I visited Andy in the hospital, care facilities and then I stopped. As far as I was concerned the man I knew no longer existed, he couldn’t walk, talk, eat, laugh, he was lost; and it only brought me pain and anger to see what he had become.
During this time I was blessed with the gift of my baby girl, despite being told it may never happen. Unfortunately that blessing came with an extremely difficult pregnancy, for those present they can understand just how challenging it really was – and no – I don’t just mean the part about me being an asshole. Though I feel absolutely no regret for throwing away your lunches. I had a tough delivery which resulted in an emergency C-section and despite being over the moon about our new edition to the family, I was struggling to heal and felt ill constantly.
Upon my return from maternity leave I switched positions within my company in hopes to leave some of my sadness surrounding Andy behind and better my hours for our little one; but right after doing so is when Mermaid was diagnosed with LEN. I struggled to come to terms with her condition, an incurable disease just did not sit well with me, and was still fighting a physical illness. I remember my first year in my new position, I sat behind my office door and cried three out of five days a week. I cried about Mermaid, I cried about being sick and in pain. I cried about being somewhere new and not knowing people the way I did at my past clinic, I just cried.
At the beginning of this year I had a hysterectomy. I handled it well, I knew it had to happen and understood its importance for my health. I was strong about it. Until about 2 weeks later. I remember sitting on the edge of my bed and out of nowhere, I lost it. I sobbed. I was completely overwhelmed with grief. I knew I had no other choice in that situation and maybe that’s what it was, the not being in control of my own body and happenings, I wasn’t pining for more children but having that right to decide taken from you… hurts. My Husband held me for a few minutes and told me he understood and I knew he did. I stood up, brushed myself off and never looked back.
Over the next few months I started to heal physically and emotionally. I found my roots in my new office and the idea of this, of Mommy’s Mermaid, started to take shape. Re-directing my negative energy to something positive allowed me to move past the shadows I had been living in for several years and find my happy motivated self again, but something was still lingering.
About a week ago I got see Andy. The progression he had made was nothing short of a miracle in my eyes. He recognized me, we talked, he walked, he laughed – oh did he laugh. We hugged and hugged again, his amazing wife Dale joined in on the hugs and told me all the wonderful things happening in their lives. It dawned on me while visiting that I had turned away when Andy became lost, but he was now found again. Perhaps it was because I was just as lost at that time and had nothing left to give. Despite the reasons, we sat there together again, both with our recent new findings of strength and I walked away with a full and happy heart. That day, below Eddie Vedder, I wrote down “CLOSURE.”
Had I not traveled the road I did the past few years I don’t know how genuine my feeling of “happiness” would have been this morning as I glanced back at Mermaid, but it was. The fight to overcome and come out the other side makes victory sweet.
I now have closure on Andy and I’s rocky journey and know he is happy. I have closure on my families journey to expand and can look to the future with my health, and I have closure to my fear of Mermaid’s disease because I have all of you to walk through it with me.
It’s that time of year where we look back at what we are thankful for and yes, I am thankful for my friends, my family, my home and my job, but this year – I am most thankful for closure. As this chapter closes and another one opens I thank my family and friends for sticking through it all with me, but most of all, I thank my best friend, my husband. For he stood strong as I crumbled and continuously picked me up, He watched my health deteriorate, my happiness disintegrate and yet still, believed in me. He loved me through it all, To you I say: “Il n’y a qu’un bonheur dans la vie, c’est d’aimer et d’être aimé.” – There is only one happiness in life, to love and be loved.
“There’s a trick to the ‘graceful exit.’ It begins with the vision to recognize when a job, a life stage, or a relationship is over — and let it go. It means leaving what’s over without denying its validity or its past importance to our lives. It involves a sense of future, a belief that every exit line is an entry, that we are moving up, rather than out.” ― Ellen Goodman
I asked friends and family to share with me what they are thankful for this year in words or a picture and how joyous it was to hear them share…
“The love of good man, a roof over my head, my family’s health, my adorable nephew and my niece that’s due the day after Thanksgiving, a job I enjoy, the best friend’s a girl could ask for…”
“I’m thankful for peace on earth where there is peace, thankful for coworkers and friends I CAN TRUST, thankful for my daily LITTLE struggles as they keep me going, keeping me thankful and my mind open:)”
“I’m thankful I still have a friend like you in my life. “ (and I for you my little cajun partner)
“Working in health care, particularly Oncology and the kind of illness I see people with day-to-day I am thankful for mine and my family’s health this year.”
My personal favorite…
“Many chances… not just the second but the third, fourth and tenth as well – and possibly more.”
My how we should all be thankful for chances.
And the pictures? Love them… Can you tell were from the Northwest?
I challenge you all to think about what you are REALLY thankful this year.
Looking forward to a year full of joy and adventures!
Hoping this week’s Holiday greets you all with good health and good spirits!
Thanks for walking with us today,
Mermaid’s Mommy
Mermaid has spent the past 7 days under the weather. She was severe enough that we spent an evening getting IV fluids. Thankfully she seems to be on the mend and we got to leave the house today for the first time in a week. While navigating her virus we lagged not only on our website but her daily Nevus care.
I did not expect a week of less attention on her Nevus to have much of an effect but to my surprise she complained both yesterday and today of her scales being bothersome both on her hand and under her arm. It was a good reminder that despite the circumstances, we need to stay on top of preventative care, so this week… Nevus 1 – Mommy 0.
Without any trials or research to share today I thought this would be a good time to update some photos.
I have stated before that Mermaid is especially protective of her hand and despite my efforts refuses to let me capture any good photos of it. It’s her most bothersome spot, she picks it, hides it, and states on a regular basis that it hurts or itches. Her complaints are minimal when we stay on top of our regimen but her hand definitely takes the cake in the nuisance department. Thanks to the help of Kinna Clark and geminIImages we finally have a few worthy photos.
Her Nevus is equally thick on her wrist. In the next few weeks we have 2 products we will be trying to see if we can reduce the thickness and irritation. One of which we have been holding onto for several weeks now called WartPeel. Stay tuned for more information and results!
This coming week I intend to settle the score with our pesky Nevus!
Thanks for walking with us today,
Mermaid’s Mommy
The legends of Mermaids have long been discounted by modern-day society, they exist only in folklore and fairytale’s. Perhaps they never really existed, but maybe, just maybe… there is truth to those stories.
Some believe Mermaid’s are aliens, coming to us through a wormhole; others, that they are a bad omen – set out to lure men of the sea to their death, and then, the most popular are the tales of a half fish-half woman creature sitting upon the rocks and shores brushing her lavish long hair while singing to her God Neptune in angelic, hypnotic voice. These tales claim that Mermaid’s had a kind demeanor and saved many men from an uncertain fate.
Believer or not, the conundrum of a Mermaid is nothing shy of fascinating.
It is said that a Mermaid’s complexion is pale and their skin is flecked with shimmery scales. Though you may not notice this as they tend to cover themselves with their wonderous hair.
Mermaids feed on small fish and kelp. I once asked my Mermaid what she ate when she lived in the ocean and her response then and now has always remained the same. “Little fishes!” She is adamant that at no time did she ever eat crab, seahorses or big fish – only “little fishes!”
Coming from the sea Mermaid’s require hydration so their need for water is their biggest weakness. I read once that while in human form they donned webbed hands and feet.
Aquamarine, known as the “gem of the sea” is spoke of in legends to be tears of Mermaid’s that hold the power to keep sailors safe at sea. Others claim it was the sacred stone of Neptune, washed upon shore as a gift from the God’s.
Mermaid’s have the ability to control basic elements and weather, they can transform into smaller mammals and even fade away becoming invisible. They love to be free but it is said that they grow lonely and have no power of their need for love. Its is believed that this need to be loved is what brings them to the surface. Watching men from afar feeding their curiosity. during shipwrecks and storms they would save men and it is then, that they would fall in love with humans.
Ok, so maybe the idea of a half Victoria’s secret model – half tuna, lounging on the jetty stalking pirates is a bit far-fetched, but I will tell you this – something that has the ability to cry pricey gemstones and part the seas receives a glimmer of my belief. Let’s face it, I have no intentions of meeting my own uncertain fate for doubting her being.
Fact or fiction the idea of my baby once being a Mermaid has brought light to an otherwise dark subject.
As Mermaid and her lifelong pal go through life maneuvering their oddities of scales and webbed feet, they are bound to face struggles. Perhaps struggles of pain, itching and surgery, or perhaps bigger ones. The need to hide their gifts, feeling different or being teased. Together, we will face those struggles as we are faced with them. For now, if only for a while, I can enjoy my Mermaid embracing her sea life. When she tells me stories about eating “little fishes” and swimming so fast with her tail, I will smile. If she believes her scales will disappear if she doesn’t take a bath or use her special soap – I believe it too.
I recently had the pleasure of a local photographer, who I now call friend, take interest in my blog. She generously spent a day with us, a close friend of ours and our little blessings taking pictures. Here’s the ringer – not only did she arrive at the location but brought a second photographer and a wooden sign she had purchased then had designed by another source. Her genuine desire to help raise awareness is beyond appreciated.
I cried driving home that day. I had to leave rather abruptly as Mermaid needed a nap in the biggest of ways so I never really got a chance to tell everyone what they did for me.
I choke up as I write this in a happy, humbled way. You see, time has proven that Mermaid’s case is far less severe than it could have been and our journey thus far has been relatively easy. I could stop writing about it and be satisfied with how far we have come, but I have to remember why I started this. I remember how I felt after first learning of her disease and the sense of loneliness. I remember that I longed for someone to tell me it was going to be ok. I can not tell everyone its going to be ok, because the truth is, for some, it might not. I can not think that a cute little blip about a mythical creature will warm your heart, but I can show you, through this encounter that people you would never expect to care, do. For 4 Women to lend their talents, oddities and identities to our purpose, I thank them.
You have assisted in one small step towards teaching the world about nevus owners.
I thank you for seeing our vision and letting these two little girls be portrayed as fierce, powerful Mermaid’s, if only for a day.
So today, Kinna Clark, Geneva Richardson, Coleen Papike-Robbins and Andi Hakanson, you are our honorary Mermaid’s. May you find freedom in the seas!
To see more work by Kinna Clark go to:
Www.geminiIImages.com
Thanks for walking with us today,
Mermaid’s Mommy
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