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
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
In my kitchen window sits a dried out yellow rose. When I see it, I think of the song Twinkle, Twinkle. When I think of Twinkle, Twinkle, I feel brave and scared and confused and happy all at once. So what power does this dried out yellow rose hold that it can make me feel so many different things?
When Mermaid was little she didn’t sleep well. We would have to rock her for hours upon hours. I use to pace the house singing Twinkle, Twinkle. I can recall so many nights in her room just swaying and singing, the window in her room sits at just the right spot to bring in a smidge of the moonlight that would glow as we sang. When she had her biopsy I held her down and sang Twinkle, Twinkle. She still occasionally asks for it, only now, she can sing it with me, and it’s the sweetest thing you’ve ever heard.
An old friend of mine is currently in jail after being accused of a pretty horrific crime. The details are not important at this point in time, maybe another day down the road when the trial is complete she will choose to tell her story, until then, the details hold no weight in my purpose of this connection. She has a school-age daughter and through our entire friendship I always respected what a good Mother she was. She was so fun, full of life and always talking about her little angel. In recent years she had another child and despite our distance, I can only imagine she was an equally amazing Mother to them as well.
When I originally saw the newscast of her being arrested I was in shock, I went to our old group of friends looking for their reactions and almost felt numb. She was released for a short time in which I got to touch base with her but then she was re-arrested and has been incarcerated ever since. The person I knew, in no way, shape or form, had the ability to commit this crime. People all around me were telling me that “people break” they ” do things we would never expect”, one person told me she wouldn’t be there “If they didn’t have the evidence to prove it.” Yet I have still NEVER been convinced. Her first hearing was coming up and I asked multiple people to join me, I needed to see her face to face. I felt like it would give me a better feeling of what happened. In the end nobody came and I went alone. I don’t know what I was hoping for, I knew it was just a hearing with basic information, I expected it to last 10 minutes, I assumed there would be others on the docket, a room full of people where I would have simply blended in and I would have arranged my whole morning off to leave just as confused.
As I entered the court room I stalled. The entire thing was empty. Just then a lawyer walked in and asked me if I was there for that specific case, I said yes, and he assured me I was in the right place, then he left the room. 15 minutes until start time, nobody there. 10 minutes until start time, nobody there. I text a mutual friend explaining how odd the whole experience was, 5 minutes until start time… I hear someone behind a closed door state that she has arrived. I got butterflies, my palms were sweating, Why was I the ONLY person in this room? There she was, walked in by an officer, placed in a chair in shackles, just her, an officer and I. She had no idea I was coming, how could she, we had not had any contact since the night she was arrested for a second time. She looked beautiful, as usual. How she managed to pull off looking like she had make-up on is beside me, but she did. She whispered to me “Thank you for coming” asked about my Mermaid and told me she loved me.
As her lawyer entered the room and we were now passed starting time they spoke so quietly to one another I couldn’t hear what was happening. I then saw her lawyer pull out 2 round white buttons, a button I recognized. It was the voice box for a build-a-bear. She had two of them. In a silent court room, much like Mermaid’s room all those nights I walked and swayed singing Twinkle, Twinkle – she began to sing into them. One “You are my sunshine” and the other… you guessed it, “Twinkle, Twinkle.” I cant even begin to tell you the level emotion that took over. I sat there crying, watching this fellow Mother, friend, human being, sing her children lullabies into voice boxes so they wouldn’t forget her.
Court began. She was confident, brave and it was over. Until the real deal a few months away that is. As it ended her family showed up. They had been misinformed of the time and missed the entire thing. They arrived with enough time to sit down and be asked to leave. The lawyers finished up a few conversations and I waited in the hallway with the family. They shared positive information with me and her Mom asked that I stick around a few minutes for a picture outside.
Outside of the courthouse we were all given a yellow rose. We took a picture holding it and her Mom intended to send it to her to show her our support. I thanked her Mom, hugged her, and left.
When I made it to my car to leave I couldn’t go directly to work, I was on the verge of losing it, I was holding in so much. Instead, I drove to a nearby park on the river, put my car in park, the rose on my dash, and sobbed. So many lives have been effected by this terrible tragedy, two children are without their Mother, while my friend’s Mother watches her own babies life unfold, helpless, just clinging to hope. The echoes of her voice singing into the voice boxes ran through my head over and over. I cried until I had nothing left. I fixed myself up, and left. Nobody at work would know what my morning had been like. None of the patients would even begin to guess the despair I was feeling only an hour ago. The people I returned emails too would think it was a normal day, but it wasn’t.
I believe everything happens for a reason. We may not know the reasoning behind my friend’s story just yet, but I believe I was meant to be in that room, alone, with my friend, while she sang to her babies. I believe I was meant to have those few small moments to see and know that the person I knew, was still the person I knew. Call it what you will, I felt in that moment, as she sang so peacefully that my soul knew she would one day walk free.
That night I held Mermaid a little tighter, and sang her Twinkle,Twinkle.
The rose sits in my kitchen in the same vase I placed it in that day so long ago. It is dried perfectly and reminds me daily of someone else’s struggles.
Mermaid’s disease is harder on me than it is on her at this point in our lives. Our journey right now is about learning to cope with what life has given us. Throughout our path I have felt sad, anxious and nervous. Some of that I have overcome, some of that, I haven’t, but much like my friend, I have no idea what our future holds at this point in time. What I do know, is that something inside me, something strong, tells me that we are all going to be just fine. I think about my friend’s little girl pushing that bears hand and it singing to her, offering her comfort, just as it does for my Mermaid when I sing it to her. Our struggles, be them big, or small, lead us to find little rays of sunshine, small glimmers of hope that give us peace in merky waters. I believe Mermaid and I are on the path we were destined to be on, that she was given her disease to rise above and prove that being unique makes you shine.
Twinkle: shine with a gleam that varies repeatedly between bright and faint.
To my friend, may you ever see this, and all our fellow nevus owners, continue to twinkle.
Thanks for walking with us today,
Mermaid’s Mommy.
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,
Mermaid’s Mommy
This piece was both the hardest and most inspiring piece I have shared about a fellow nevus owner, I spent a significant amount of researching and learning about the journey the Lopez family is on; and where I could never begin to scratch the surface of what they have endured, I hope to highlight in this brief post the most important facts surrounding their situation. It in no way, shape or form takes anything away from any nevus owner, but the unique situation this family is in, adds another layer of complexity to not only their child’s disease; but his ability to receive care. I have stated before that I intend to learn and teach about all forms of nevus and have been lucky enough to connect with a special family in Colombia to share a bit of their story with us. Nevus itself comes in many forms. One of the more rare and complicated types is Giant Congenital Melanocytic Nevus.
Let’s start by learning what Giant Congenital Melanocytic Nevus is:
Giant congenital melanocytic nevus occurs in approximately 1 in 20,000 newborns worldwide.
Giant congenital melanocytic nevus is a skin condition characterized by an abnormally dark, noncancerous skin patch (nevus) that is composed of pigment-producing cells called melanocytes. It is present from birth (congenital) or is noticeable soon after birth. The nevus may be small in infants, but it will usually grow at the same rate the body grows and will eventually be at least 40 cm (15.75 inches) across. The nevus can appear anywhere on the body, but it is more often found on the trunk or limbs. The color ranges from tan to black and can become darker or lighter over time. The surface of a nevus can be flat, rough, raised, thickened, or bumpy; the surface can vary in different regions of the nevus, and it can change over time. The skin of the nevus is often dry and prone to irritation and itching (dermatitis). Excessive hair growth (hypertrichosis) can occur within the nevus. There is often less fat tissue under the skin of the nevus; the skin may appear thinner there than over other areas of the body.
People with giant congenital melanocytic nevus may have more than one nevus (plural: nevi). The other nevi are often smaller than the giant nevus. Affected individuals may have one or two additional nevi or multiple small nevi that are scattered over the skin; these are known as satellite or disseminated nevi.
There is a 1-2% chance of Melanoma developing in those with CMN and these typically develop by age 5. (note: Mermaid’s possible complication is also typically developed by age 5, I found this to be an interesting connection)
Bathing trunk nevus, Cape Nevus, Congenital pigmented nevus, Garment nevus, Giant brown birthmark, Giant hairy nevus, Giant hairy pigmented nevus, Giant mole, Giant nevus, Hairy birthmark, Leptomeningeal melanosis, Multiple congenital melanocytic nevi, Neurocutaneous melanocytosis, Neurocutaneous melanosis, Satellite nevi, Swimming trunk nevus.
Let’s meet Lucas:
Lucas was born in Colombia on August 9th 2014, to Pedro and Angela with a giant congenital melanocytic nevus on the left side of his face. You can imagine as any parent would feel, the fear that ensued. Pedro stated that they felt overwhelmed because the Doctors didn’t know how to treat it or how to proceed.
While this condition is not threatening his life at the moment, Doctors have recommended its removal due to a history of skin cancer in Lucas’ family (Melanoma) and to correct a deformation.
Lucas had his first surgery April 23rd 2015, at the young age of 8.5 months old and his most recent surgery was completed February 18th 2016 but he is doing well and getting stronger every day. Lucas will be back to his favorite pastime of playing with cars in no time at all!
Because of the complexity of his case, Lucas has to travel to the US for treatment, from Colombia (South America).
The Physician’s in Colombia did not have enough experience with the removal process, specifically on the face so the family made the decision to bring baby Lucas to the US to receive treatment in Chicago. They continue to reside in Colombia and travel to the US for each consult and surgery. Their insurance does not cover the procedures here so everything has to be paid for in cash.
The reason for the entire procedure is to prevent future physical degradation of the CGMN and melanoma.
The total number of procedures suggested is of 9, however, there is a chance of having that reduced to 6 depending on how well treatment works along the way. Below is a suggested timeline for Lucas.
1st Procedure: Healthy skin expansion, April 2015 – (Schedule update DONE)
2nd Procedure: Nevus partial removal, July 2015 – (Schedule update DONE)
3rd Procedure: ear reconstruction, November 2015 – (Schedule update DONE) the surgery was in December 4th Flap Reconstruction, Part of ear reconstruction, Healthy skin expansion
4th Procedure: Healthy skin expansion November 2015, (Schedule update DONE) Change the schedule to February 18th 2015, Nevus partial removal
5th Procedure: Nevus partial removal. February 2016, Schedule update Change the schedule to June 2016 Nevus partial Removal
6th Procedure: Healthy skin expansion June 2016, Confirmation pending
7th Procedure: Nevus partial removal. September 2016, Confirmation pending
8th Procedure: ear reconstruction, September 2017 Estimated
9th Procedure: ear reconstruction, September 2020 Estimated
The total estimated time frame is 5 years (subject to funds, medical team availability and trips)
Budget
1st and 2nd procedures: US $ 54299 DONE
3rd to 5th procedures: US $ 71428
6th and 7th procedures: US $ 54199
8th procedure: US $ 36347
9th procedure US $ 39618
Budget includes: Doctors, anesthesia and hospital fees. Travel expenses between Colombia and the US. Living expenses and health insurance in the US for Lucas and his parents.
The power of love is a beautiful thing, understandably Lucas has amazing parents that are going to every length to ensure he receives the best treatment possible but they are not doing it alone, nor without returning some of that generosity extended to them.
The Lopez family has set up a foundation in Colombia to help others with CMN. Through a combination of this foundation and a crowdfunding account they raise funds to cover all the costs. Recently, there was a change in the exchange rate lessening the amount of US dollars received through donations but their hard work and dedication to making all of this possible actually brought in more donations than needed and just moments before Lucas finished his last surgery, they exceeded the amount needed for this round of treatment.
I asked the family to share with me any positives they have found throughout their journey and what they would like to share with other families going though similar experiences. The response I got was simple, yet powerful. They enjoy helping others and meeting wonderful families with incredible journeys, Pedro said “Your baby is a miracle that will challenge you to do amazing things, stay strong.” Is that not the truth.
I keep the very first piece I ever wrote as a permanent sticky on our website because it reminds of where this whole journey began, that place of fear and desperation. I often forget I ever felt that way because I am surrounded by so many amazing people who fight not only for us to find treatment and cures, but for everyone effected by this disease, despite it’s form. Had I opted not to start this I may never have come across this amazing family.
Pedro made a comment on one of his fundraising sites that nailed the emotional roller coaster we are all on.
“We are all supporting actors in a story,
Recently I heard a message that mentioned how we ask many times questions about why we go through certain situations we do not understand and feel that life has been unfair to us. Why? Why? It is in our mind for no apparent answer, only time will give us the answer, and further away from our lives the butterfly effect will be reflected in the offspring of our next generation.
But meanwhile we can see small brushstrokes of such great masterpiece as evidence of what we are doing is not only for our child but also to impact the lives of others who are going through similar situations to ours.”
“Small brushstrokes of such great masterpiece”
Every move we make to put those effected by this disease at the forefront of our day, if only for a moment, is a small brushstroke.
We always speak about the strength and courage of those with a nevus and our support naturally goes to the individual effected, but it’s important to remember the families as well. In this case the Lopez family is traveling to a different country, without insurance and uprooting their lives to support their son. Pedro and Angela – you are in my thoughts as well and Lucas is lucky to have such strong role models in his life.
To learn more about Lucas’s journey or to donate you can visit their page at:
http://www.youcaring.org/lucaswantstoprevent
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.
January 28th 2013, 1:00 pm:
I had just finished eating lunch at work, sat up to clock back in and became very confused. Did I spill my drink? Pee my pants? If it was pee, why wasn’t it stopping? I probably owe a lot of people an apology for my behavior the next hour or so, I was completely irrational, I know this, but that will come later, another day, in a different form, I promise. What matters today, is that moment, is where our journey together really began. I wasn’t due for quite some time so it was all so unexpected. I suppose you were ready, though you took your sweet time joining us here on land. Roughly 36 hours that is. 36 long, painful, life altering hours.
They say the memory of labor fades away, I beg to differ, My experience of bringing you into this world will never be forgotten, but I forgive you. You see, I knew our lives were changed forever the minute you joined us, but I had no idea just how… until now.
I now know that in your 3 short years in life you have changed almost every ounce of my being. For the better.
In your short but eventful life have seen the oceans and stood in the sands from the Washington coast line all the way down to California. You have ventured the strip in Vegas, held a baby tiger, been a local celebrity on the news, met a celebrity, rode the teacups in Disneyland, peered at the land below aside the pilot in a cockpit of a plane, been diagnosed with a rare disease, gazed at the redwoods, rode a gondola for miles in Idaho and laughed at your brothers fear at the top of a ferris wheel. You have been the best little adventure seeker I could ever ask for.
It means the world to me that you can stand by our side throughout our travels, but what you have given me that has changed me, is your heart.
When Derek Jeter played his last game for the New York Yankees, a story and game you would only believe was made for the big screen; and I sat there in disbelief crying, you climbed upon my lap and wiped away my tears. Reminding me how to be compassionate.
When I was ill and crumpled in the kitchen in pain, you rubbed my back and told me it would be ok. Reminding me how to be kind.
When you had a biopsy and were pinned to a table with all the adults fearful of how it would go, you remained calm, still and quiet. Showing a strength none of us could believe. Reminding me how to be brave.
When your slowly falling asleep and ask me to sing twinkle twinkle again in your softest voice as you fade away into dreamland, I am reminded to savor small moments.
When you made a necklace at school that consisted of a string and one tiny bead that you could not wait to show me, then said it was for me; I was reminded of how to be generous.
When you learned a new “trick move” and showed me repeatedly while dancing in our living room to Aerosmith, I was reminded of how to be happy.
Being an adult is hard. We get sucked into our daily routine of mundane tasks and often forget to take time to practice all these things. We focus on the negative, whether we want to or not and become overwhelmed. I am the biggest offender of this, the daily grind often plagues me and before you, probably consumed me. Your small stature but huge spirit has granted me the opportunity to remember on a daily basis to be compassionate, kind, brave, generous, happy and to savor the small moments.
It’s because of you that I rediscovered my love of writing and began using that tool to share our crazy, sad, happy, frustrating, amazing journey with others.
You were dealt a tougher deck than others in your disease, which we are still searching to truly understand and manage and though I know you do not realize it now, it is because of who you have been in these 3 short years that I will forever be compassionate to others with differences, kind to those who join our journey, brave enough to publically share all our emotions and steps on this walk, generous enough to share our knowledge and products, happy for those who do not walk in our shoes and forever savor every small notion we receive along the way.
Today is a special day, for today is the day you made your mark on this world.
My Mermaid, I love you to the deep end of the seas and back.
Happy Birthday.
Mermaid’s Mommy
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
When it comes to trialing products, aside from a basic moisturizing product, I tend to shy away from Mermaid’s largest area of nevus. Not only is this part of her nevus in a sensitive location but it is the largest area.
However, I feel confident that this product deserves a fair shot to show its potential.
I’m sure by now you have all seen the recent rave over “it works” products. From body wraps to a daily dose of greens to essential vitamins. I have to admit, I recently jumped on the band wagon and purchased a few products.
One that caught my eye as a possible benefit for both myself and Mermaid was the exfoliating peel. Being someone that suffers from eczema on my face and arms it was a no brainer for myself. I get embarrassing spots, though small, on one of my arms and my cheek that crack, bleed and flake. The true purpose of this product is not intended to aide in eczema, and certainly not any form of nevus, but it does state that it will reveal softer, smoother skin.
The product states that it is intended for the face and neck and we all know our faces are most sensitive. If its gentle enough for that use I see no qualms about testing it on Mermaid’s underarm.
We will trial this product at the 2 times per week per its recommended use for 2 weeks. During this time I will stop all other products to give it a true chance to shine.
Here’s what Mermaid’s nevus currently looks like.
Looking forward to seeing what happens! Stay tuned for results…
Thanks for walking with us today,
Mermaid’s Mommy
Mommy's Mermaid 