As we continue to close the gap on our one year anniversary I share another gem from our first few months. If you have yet to read it, this is the article after we got the results from Mermaid’s biopsy, what a happy day this was. To have answers and be cleared of cancer was so joyous, enjoy!
https://mommysmermaid.com/2015/09/27/prognosis-happiness/
Thanks for walking with us today!
Mermaid’s Mommy
Dear Mom at Starbucks,
I thought long and hard about the comment you made to me a few mornings ago and I have to say, the longer I thought about it the more upsetting it became. I’m sure you will never see this but other people will, and if our two chance encounters serve as a small reminder to other Mom’s, then my purpose is served.
You said to me, while standing in line at Starbucks “Oh I saw you at wippersnappers, you really shouldn’t have your computer there ignoring your kid.” (for those not familiar, it’s an indoor playground) I am never the best at witty quick comebacks but my response to you was “thank you for judging me” and I walked away. So why did that one small comment and 30 second interaction continue to plague me?
I guess to understand I should share a little about myself and that night.
I am a working Mom, 5 days a week I wake up before dawn and go to work where my job requires me to hear and learn some hard things about people who I can’t always share, it’s the nature of the work. I know that, and I am ok with it, but I carry it. I leave work, pick up kids, head directly home where I start chores and dinner; clean up animal messes, followed by figuring out lunches for the following day, school and work clothes, maybe build a tower or two, bath-time, skin regimen time, fight a 3-year-old about bedtime and hope for a small moment to relax uninterrupted before the whole cycle starts over, or someone throws up. My weekends are typically filled up with birthday parties, baby and bridal showers, sporting events, family obligations and home projects, all of which my children are a part of.
In the recent past my daughter was diagnosed with an incurable skin disease that came with a laundry list of potential complications, severe ones. At that time I was scared and sad and knew very little about what all of it meant. That’s when I started this blog. I thought maybe, just maybe a few family members would follow me and if I was lucky, I would connect with another family or two who were going through the same experience my family was. It was received better than I ever could have imagined and before I knew it I had a dedicated group of followers that looked forward to what was coming next. It serves as not only a positive outlet for myself, but a tool for others.
Now you can see that we are a busy family, a very blessed, but busy family. Finding moments to write don’t always come easy. I typically find myself in the garage late at night doing research and piecing together my next post. The garage is quiet and I can open the door to hear the night sounds.
That week we had actually been to the playground twice before where my undevoted attention was on all the children present. I like it because they have staff that go inside the structure and check on the kids, it’s small enough to sit in one place and see the whole thing and if your child exits. It feels safe. The night you saw me there, yes, I got a cup of coffee and broke out my laptop. The place was very busy and I did not see you, though I wish you would have voiced your concern at that time, opposed to later, in a snarky judgemental tone. I admit, I too can be snarky, ask my coworkers, friends and family. I can have a sharp tongue, but it’s typically around work issues or in a funny tone, not meant to be blatantly rude, and certainly not to strangers.
That night I was working on a piece I had made a promise to get up soon and the house was buzzing with energy. My toddler was having an especially emotional day and both my kids were delighted when I mentioned heading to the playground. I told them I would be writing a little bit. By now they fully understand that means I need a smidge of time in my own zone. My son is quite a bit older, perhaps the age soon that those places wont be cool, of a more than legal age to watch his little sister and was with her the entire time we were there.
You noticed I had my computer out but you didn’t seem to notice that every few minutes I got up, waved at the kids, checked to see if they needed water and even took a break to slip my shoes off and go down the slide 8,000 times.
99% of my time outside of work is spent with my children, even my blog is about one of my children, I spend countless hours educating myself on all forms of her disease in hopes to bring facts and hope to everyone effected by it. If taking my kids to a safe place where they can run and get out their energy opposed to being cooped up at home and I can have a few moments to get some work done – offends you, I apologize; but here is my reminder and ask of you…
Before making a brash judgement, if you see a Mom that doesn’t seem as attentive as you think she should be, maybe a little less put together or disheveled, ask yourself first, what their day may have been like. Maybe they spent the entire day tending to their family, being on call for Kleenex, food, entertainment, soothing, storytelling, rocking, refereeing and acting as a maid service; and that very moment you encounter them, is the first moment all day they turned on their computer, looked at their phone, looked at facebook. Perhaps that person had a bad day, received bad news, was trying to process something and incapable of being super Mom for a minute. She may have been up all night with a sick baby, or sick herself and struggling to keep focused. You, as a Mom, I’m sure have had these moments. As we all have.
In those times, if something seems off, ask if you can help, keep an extra eye out for her kids if your worried and remember a time that you too, may have been judged for something you did, that really was ok.
My daughters disease has taught me so much about people because it has placed me in a position to have acquaintances from around the world with whom I share stories about our lives and I see the daily struggles they endure. They make my complaints about being “busy” seem silly. It has made me more compassionate than I ever could have imagined.
Our jobs as Mom’s is not only to look after our cubs, but our pack. The other Mom’s. Our job is to empower one another, watch out for each others cubs and well-being. Be the example our children need us to be by showing one another kindness.
It’s so amazing to me as an adult and a Mother to see all my friends who are also Mom’s; in a different light than I use too. I am the Mom that strives to teach my children about hard work, Others to teach about health by living an active, clean eating life, the one who’s kids will always remember their Mom knitting their clothes, gloves, weird monster pants and hats, the Mom who raises and tends to the chickens; teaching their little man about our food sources. My Mom friend that saved children who couldn’t be with their birth parents and loves them just as they were her very own – showing them people are good, My strong-willed Mom friend who takes her girls to roller derby, showing them strength and all my beautiful cousins who spend their days home creating every pinterest pin possible with their kids, feeding their creativity. We are a group of hard-working, crafty, healthy, loving Mom’s who watch out for one another.
Despite all the Dr’s appointments, stuffy noses, loss of any form of privacy, vomit, fits and being so busy I can barely function some days, I wouldn’t ask for things to be any other way, because I am in my happy place with all this madness.
I never owed you an explanation of who I was, what my days are like, or why I chose to do what I did that night, but I gave it to you because I have made countless mistakes in my life, some pretty terrible, but learned from them and I am giving you the benefit of the doubt. . I am going to assume that you yourself had a rough night with your children, were headed to work after a sleepless night and just needed someone to put that anger on. It’s ok, I get it, but I promise you this, I will go to the playground again and open up my computer. On the miniscule chance you see this letter and encounter me in that same situation again, come over, say Hi – ask what I am working on. I will buy you a cup of coffee and you can tell me what kind of Mom you are, so I can be encouraged by you as well.
Sincerely,
Mermaid’s 99% of the time attentive, wouldn’t trade my busy crazy life for anyone elses in the world, Mommy.
It’s been a while since we have had any direct contact from a physician regarding Mermaid’s nevus so our updates regarding progress have been slim, but we have something exciting to share!
Last week I received a bit of a cryptic message from our contact @ Yale University. “Hello, I need to talk to you about the study, I am leaving for the day, can you call me tomorrow, early would be best.” Now immediately my mind goes to all the wrong places. They found something bad, I messed up a specimen, I didn’t sign something, maybe they want me to take their info off my website… how could this be, we submitted everything last summer. It has to be bad. It just has too. it was pure torture waiting the 17 hours I did before reaching someone.
I talked to my Mom the entire drive to work the following morning. She reminded me to be positive and we veered into other conversations taking my mind off the call I was going to place immediately entering my office. Which is EXACTLY what I did. I purposely arrived early – knowing they are 3 hours ahead of me, dropped my bags on the floor, located my yellow sticky with the phone number and dialed.
As Dr. Chaote’s doll of an assistant pilfered through her emails to find just what she was calling about, I patiently waited. Just having her on the phone was relief enough. The suspense was killing me.
Remember, the study was conducted on the East Coast, we are on the West Coast. Until Dr. Chaote was involved there was never even a mention of having a biopsy done. When we finally had it done the results were forwarded to him via paper form but the physical biopsy has been housed here with our healthcare entity.
The information was vague but here’s the low down. Something on the biopsy result “popped out” to the physicians. They decided that they wanted to physically obtain Mermaid’s specimen and run further tests on it. What exactly caught their attention is beyond me but his assistant told me that this is GOOD news. When they see something of interest it typically means they are closer to identifying something more specific, which means more specific treatment, or leads them to further research for us to be involved in.
My “assumption” and again I say ASSUMPTION; is that the rare subtype of Edpidermolyctic Hyperkeratosis may have sparked some interest. Where I know nothing for sure I will be waiting impatiently to see where this leads us!
Glad to still be connected with the Yale team!
Stay tuned for updates!
Thanks for walking with us today,
Mermaid’s Mommy
A good body scrub can be spendy; and let’s face it – if your like me, you might treat yourself only to use the product once, forget you have it, and find it months later when it’s all dried up and useless. Sunday afternoon we were longing for a soothing bath time treatment and decided to make our own.
Here’s what we were working with: Some Lavender body oil, Epsom salt with lavender, Sea Salt and pure Coconut oil.
The health benefits of sea salt and coconut oil in the beauty department are endless, we have discussed some of these in past posts but always separately. We have yet to combine the two for a single treatment. Add in the Lavender oil and Epsom salt and it’s sure to be just the small little wonder we were looking for.
1/3/16 – 1/17/16
Well, our 2 weeks is up and it’s time for results…
Remember we trialed the “It Works” exfoliating peel. We used this product two times a week, for two weeks, on Mermaid’s largest nevus area beneath her arm. During this time we stopped all other treatments; including lotions and soaps.
Mermaid’s disease thickens, in time it is almost inevitable that it will become warty to the point that we will not be able to manage it with home care and that’s when surgery comes into play, if she chooses, or if it effects her joints on her hands. Over time you can see below that it begins to thicken. Even with moisturizers, this will happen. My hope with the exfoliating peel was that we could flatten the thicker areas and help prevent some of her “picking” and itching. Hydration is the most important factor in lessening the itch but the thicker it becomes the more painful it becomes.
Here’s where we started….
Day 1.
and ended….
I am happy to share that yes, the exfoliating peel did just what it was suppose too.
Day 14.
Let’s take a closer look side by side…
To be honest I took NO pictures along the way and paid little attention to the effects aside form making sure Mermaid was not having any kind of negative reaction to the product. I am so pleasantly surprised to see the side by side this morning.
Mermaid’s skin is flatter and currently, is not scaling.
I would have to deem this trial a huge success!
As a loyal customer we paid $36.00 for this product ($60 retail) which seems to be on the higher end of most products we try, with the exception of the WartPEEL ($80) but it lasts. I too, used the product all 4 times Mermaid did on a patch of eczema (wish I took pictures) and we have well over 3/4 of a bottle left. If your weighing out the cost, I expect this product to easily last us 3 months for 2 people.
I will move this trial to our permanent page so you can easily locate it if looking for something to try.
If you are interested in purchasing or just looking at any It Works products feel free to contact either friend of mine who will guide you through the uses and any information you could ever imagine wanting.
April Backwell
503-314-9348
Backwellfamily@gmail.com
or visit her website at:
http://www.aprilbackwell.itworks.com
or
Alicia Richardson
503-957-7126
Lishadawnn@gmail.com
or visit her website at:
http://www.dreamingwithalicia.myitworks.com
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
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
I feel like we have been consumed by the holiday season, in a good way, but off the grid for a bit. I finally got to work and made some changes to our website.
We now have a page titled “Honorary Mermaid’s” that will house stories about other people’s journeys, afterall – were all in this together! A Mommy’s Mermaid follower and fellow support group member will be featured in January. Looking forward to finally meeting in person and hearing her story.
All other pages have new and updated info so swing in and catch up!
I wanted to share a quick update after our wartPEEL trial. Mermaids nevus is still flat and smooth a month later. She is so proud of it and often shows me how her “owie is gone” – though inside I expect it will return in time, I will take all the days we get without an elevated, painful, itchy nuisance stealing her focus.
Here is a picture of before and now…
So stop in, see what’s new and we have more to come over the weekend.
Hoping this holiday season is greeting you all in good health and good spirits.
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
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
Mommy's Mermaid 