Tag Archive | Love

Every penny counts

This has no correlation to my typical subject matter but I am going to use this platform to bring more eyes and support to a family in need.

Tuesday March 1st, Kristi Oliver of Gresham Oregon, died from head and chest trauma after a 100-foot cedar tree fell on her car while driving. The tree smashed into the driver’s side of her SUV at 6:41 a.m

Another driver pulled over to try to help but Oliver was pronounced dead by the time an emergency crew arrived. It wasn’t immediately clear what caused the tree to fall, though recent storms in the rural area east of Portland may have been a factor.

The moss-covered 100-foot cedar tree snapped and crushed Oliver’s windshield and hood.

Kristi was only 30 years old and nearly 4 months pregnant with her 2nd child. She leaves behind a husband and 3-yearold son.

To donate or offer condolences please visit their go fund me page at:

https://www.gofundme.com/b4s32hd8

Thanks for walking with us today,

Mermaid’s Mommy

Make a brushstroke

Feb25

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)

Synonyms of Giant Congenital Melanocytic Nevus:

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

She said yes!

Feb6

Epidermal Nevus effects roughly 1 in 1,000 people worldwide. Each subtype i.e. LEN (linear epidermal nevus), ILVEN (Inflammatory epidermal nevus) or verrucous epidermal nevus, holds a different value of people effected. Less common, effecting roughly 1% of the population are congenital epidermal nevus and/or melanocytic nevus. Within an individuals type of nevus can be additional subtypes, such as Mermaids diagnosis of “epidermolytic hyperkeratosis;” which effects 1 in 2-300,000 people worldwide.

I know, because until Mermaid was diagnosed, that unless you have a personal connection to this disease, it is not something the general public is aware of. I had never in my life even heard of this disease, let alone met someone with it, and I have worked in the medical field for nearly 12 years! Hence the fact that they are considered rare genetic diseases.

When I started Mommy’s Mermaid it was out of pure desperation for contact, support and answers from others living with this disease. Throughout this process I discovered a few support groups and have gained my own following here, on my website, of both people who themselves have a form of the disease or know someone with it.

To possibly imagine that Mermaid and I would be graced by God to have another nevus owner in our own backyard was unfathomable. It seemed that everyone we had contact with was Midwest or East Coast. Graces were granted and after months of communicating via Mommy’s Mermaid, our Facebook support group and text messaging, we finally got to meet face to face with a fellow local nevus owner.

Before meeting I could never even begin to express to you the gratitude I held for our crossing paths. We are relatively new to this disease and our cohort is an adult who has been living life managing her symptoms long before we even knew it existed. The opportunity to pick her brain, absorb her knowledge, hear her courage; To place my Mermaid and another nevus owner – with significant enough struggles to match our own – in the same place, wow – words cannot describe.

The days leading up to our meeting I was nervous, like my husband and I’s first date kind of nervous. Who was I? I’m just a small town, working Mom that put together a website in hopes of finding others. I have written one other piece on a fellow nevus owner and her daughter and took a stab in the dark that maybe, just maybe, our new found companion would be willing to meet with us, share her story, and trust me to share it publically in a tactful way. I honestly expected a no. I wasn’t asking her to answer a few questions from the comforts of her home, but to physically meet in person, give us her own valuable time. She doesn’t know me from Adam, how long could we really talk? What was I going to ask her? At what point did I go from sharing our own experiences to dragging other people into this crazy ride acting like a reporter of some type?

Well folks, she said yes.

Introducing, Monica.

It was Mermaid’s 3rd birthday. I had taken a few days off to celebrate my little blessing and what better way could we have done that than to spend it with a fellow nevus owner.

We opted to meet at a local kids play place. Given the age of our children and the weather, you really couldn’t have found a better location. It’s really kind of comical, our stories were interrupted by crying children, hungry children, diaper changes, snotty noses and just about every other possible kid related need. It sounds kind of awful but really, that’s what both are lives are like on a daily basis so it was normal and delightful to us. It felt comfortable. I only hope between all the needs I was able to capture Monica’s story correctly!

Monica is the 2nd of 5 children, a teacher by trade, a wife and a Mother of two. She has taught an array of ages and in many settings but my praise goes to her work as a special education teacher. Specifically with the Life Enrichment Education Program (LEEP); which provides specially designed instruction and related services for eligible students ages 5-21 years with special needs. The curriculum focuses on personal management, communication, practical living skills, vocational skills, leisure/recreation activities, and social skills. Throughout her teaching career she found the humor in her disease and when asked by students what was on her leg she would drum up stories of what it was, things like she got it saving animals from a burning building, always something that made her a hero. Her stories made me laugh and I adore the ability to have fun with it. Though I have to say Monica, in my eyes, your involvement both as a teacher and time with those that have special needs, makes you a hero. Saving cats is pretty cool too though.

As far as Monica knows, her nevus was not present at birth. Her first real memory of its presence was grade school, with a busy Mom, remember – there were five children – it may have been present prior to that but without her speaking up about it being bothersome it may have been overlooked as just a normal benign skin condition. At that time her nevus was present only on her left leg. Around age 11 it became more prevalent and began to cause problems so she was taken in and officially diagnosed with Inflammatory linear epidermal nevus (ILVEN).

Over Monica’s lifetime she has had 3 biopsies. The first when they lived in Northern California at age 11, which was where her initial diagnosis of ILVEN began, again in her 20’s here in Oregon and lastly, in her 30’s. So why so many? Over the years her nevus has spread, now her nevus rears its head from her left knee down to her foot – around her big toe, with a small spot on the bottom of her foot and up the inside of her thigh. In more recent years Monica has found her ILVEN to be more bothersome than ever before. The previous biopsies were old and locating the dermatologists that performed them proved more difficult than just completing another one. The purpose was to have a clear diagnosis with her current dermatologist to move forward with treatment options. What’s interesting to me is that I have noticed the small spot on Mermaid’s under arm where her biopsy was performed has never produced new nevus, Monica has noticed the same thing. All places where biopsies have been done have not produced new nevus, which leads us both to have faith in the excision process. As Monica put it “a light bulb moment” which made the path she wanted to pursue very clear.

There is no clear reason for why it has become more active; i.e. spreading, becoming inflamed, and itching; however, in more recent years Monica has given birth to two adorable baby angels (really, I mean adorable – her 2.5 year old son was my friend within 60 seconds of meeting me and her infant smiled nearly the entire visit, not one whimper) and she has experienced more activity with hormonal changes, especially postpartum, both times. It has come to a point where she can confidently state that it is effecting her quality of life. Itching being the biggest hinderance, which I know so many of you can relate too.

Monica recently met with her surgeon at our famously known teaching hospital; Oregon Health and Science University (OHSU) who is a specialist in ILVEN. It is difficult for me to write this next piece of information because I have struggled myself to find someone local with a real extensive background and experience with ILVEN or LEN, but her current surgeon/specialist told her that of the TWO prior cases she had treated, Monica’s presented as the most extensive case she had seen. I understand the disease is rare but there seems to be a lack of Physician’s in our area that have dealt with ILVEN/LEN to the extent we read about in larger cities and East. I have no doubt that said doctor is proficient in her abilities and perhaps our region just does not house a high number of patients with ILVEN/LEN; which would explain only seeing two previous cases and confirm the definition of “rare genetic disease”, but it is still a bit of a surprise that Monica will only be her third treated case.

As they discussed treatment options, the opportunity for laser therapy came up and her physician stated that both cases treated with laser, grew back. The treatment was done on one patient’s finger and another, on their face. I really have not heard of anyone having long-term success with CO2 treatment. It seems to be a fairly painful process with short-term results. Which goes back to the “light bulb moment” that excision was the right decision. To move forward – Monica will need to not be pregnant or nursing, so time is the only barrier at this point.

It was such a blessing to sit down with an adult nevus owner and pick her brain about her experience thus far. We are so new to the disease that it was nice to hear the positives and negatives she had experienced thus far. Most interesting to me was a study she participated in. When Monica was in her twenties she voluntarily participated in a study at OHSU in trade for care. A group of members with skin conditions met with Physician’s and shared details about their condition. They were not allowed to tell them their official diagnosis. They shared details such as age, symptoms, and treatments tried. With that information the panel of Providers tried to decifer what skin ailment they had. After knowing the official diagnosis they made recommendations and offered free treatment. Their recommendation at the time was cauterization. The bonus to voluntarily being there is the ability to decline treatment, which she gladly did. The idea of painful burning of the skin that smells atrocious was a pass. Interestingly enough, Mermaid has also been offered this option, which we as well, declined for the exact same reasons. Nonetheless; it was fun to hear about her adventure in guinea pig land!

I was told that nevus growing on hands and feet can cause joint pain, I asked Monica about this being that her nevus grows on her big toe and thankfully, she has not had this experience. From time to time it may crack, causing pain but only exterior pain. Monica swims on a weekly basis and has found that the warmer the water, the more she itches. The pool she attends is salt water and has not found any therapeutic connection with her nevus. Like so many nevus owners she has tried her fair share of creams and ointments with limited results but is currently using an ointment called Clobetasol Propoimate 0.05% and has found it to be extremely helpful. This medication is used to treat a variety of skin conditions (e.g., eczema, dermatitis, allergies, rash). Clobetasol reduces the swelling, itching, and redness that can occur in these types of conditions. This medication is a very strong (super-high-potency) corticosteroid. She applies a layer of the ointment and covers it with a sheet of tagaderm, leaving it until it falls off, roughly 24 hours later. She has found that it not only relieves that pesky itching but reduces the thickness of her nevus.

I asked Monica what the biggest hurdle was coming up in school and I got the exact answer I expected. Trying to explain to others that it was not contagious but would never go away proved difficult; as well as feeling as if it effected her socially at a younger age. She wisely reminded me that bullies will be bullies, if it wasn’t her skin, they would have found something else to be mean about, they are just mean, end of story. Monica then followed her answer with a statement that I have thought about a lot since that day:

“We as people are way stronger and resilient than we give ourselves credit for.”

You are right.

Monica noted that as a Mom, it probably hurts more than being the one with the actual disease, it causes them heartache, and I think she nailed it. I often feel sad and helpless, a sense of heartache; when Mermaid is that resilient, strong person that acts as if it doesn’t exist.

The end of our conversation was about finding people who fit your need at the moment, whatever that moment is. She spoke about recently losing her Father and finding herself drawn to friends she had not spent much time with recently, but they were in the same place, and there is comfort in that. Her piece of advice to everyone new to the disease?

“Knowing you are not alone is sometimes all you need, find people with the same situation to comfort you, make that connection.”

Isn’t that the truth, after all; that’s what started Mommy’s Mermaid, the need for that connection with others in our same situation. She could not have chosen a better piece of advice to offer.

I captured a pretty special moment during one of Mermaid’s breaks from the play structure. Monica asked Mermaid if she would like to see her scales, “the ones like you have” and kindly lifted her pants to share. As that Mom that feels the heartache, this moment means the world to me. To show Mermaid that she is not alone, that other people share her special gift, to make that connection… I cannot ask for anything more.

As Monica showed, every case is unique. Some proving to be bothersome from day 1, others later in life. There seems to be this never-ending circle for all nevus owners of trying product after product until you find the one specific to your own need. I am hoping to get in touch with OHSU and learn more about their blind trial, it would be fun to know what kind of conclusions they drew from it.

Monica – Thank you for sharing your story with us and allowing me to bring it to life. Thank you for being such a kind gentle soul. I truly felt as if we were old friends and will forever think of you that way. You will remain special to us for so many reasons. Our first connection in live flesh to another nevus owner, a reminder to keep our sense of humor around the disease and proof, that this disease does not define who you are.

We wish you all the luck moving forward with excision, we will be there to support and pray for quick healing and relief. We will continue our connection along this journey.

Today, Monica, you are an honorary Mermaid and we are the ones lucky enough to have you on our team.

Thanks for walking with us today,

Mermaid’s Mommy

3 years on land…

Jan30

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

Our promise to you…

Jan17

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.

End of January we will be meeting up with a fellow Nevus owner face to face to swap stories and learn more about her journey through childhood to adulthood with this disease.

I recently got an invitation to participate in a research study with Kaiser Permanente where I would provide my DNA and health information to the research center. They will use it to study how genetic and environmental factors affect health and look for new ways to diagnose, treat and prevent certain diseases. I will be looking into the possibility of Mermaid joining this study as well.

Remember, Mermaid’s official biopsy reading was:

-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.

We will have a routine check up in the next few months and report on growth.

We are hoping to change the format of our site and be able to do some give-aways of all the amazing products we have encountered from local vendors.

There seems to be a lot questions surrounding the possibility of increased risk for a Wilm’s tumor so we will diligently research this to the best of our abilities.

We will hold a fundraiser for a research organization and donate on behalf of all of us.

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

Holiday closure…

Nov24

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 5^th 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

Peeling away our blemishes

Nov13

I am so excited to share results from our trial of WartPEEL. If you missed the post explaining what the product is just scroll down to the last one and read up. It really is worth educating yourself about and considering a try.

Being that this was our first trial I was indecisive on how many nights to apply it and the exact quantity so we fumbled through this a bit. In the end we applied the WartPEEL to Mermaids wrist for 3 nights.

In all honesty I was shocked after the first application and thought I had done something wrong until I read more about how it works and realized it was ok that it appeared “worse” than better.

So here is what we were working with before using the WartPEEL. Now remember, I chose the spot on her wrist because she verbalizes that it is bothersome to her. It’s difficult to tell in the picture, I should have gotten a better angle, but the crease on her wrist houses a raises patch of Nevus that causes her much angst.

Mermaid’s nevus is beginning to spread up her arm and hand but thus far is flat. This area on the wrist is much thicker than the picture gives credit. Its rough, bumpy, scaley and bothersome on many levels.

Now to see how it did…

Below are days 2 , 3 and 4 the morning after application.

a different view…

The medication requires that you allow 15-20 minutes to dry prior to placing tape over it for the night. However, it also states to wash your hands immediatley if you come in contact with it and I was given direction via phone to ensure my Toddler did NOT touch the product. That being said attempting to get a 2.5 year old to stay still and allow the medication to dry without touching it is slim to none. I covered it immediately after application leading to some of the medications spreading off the direct target and causing mild irritation.

We used one of our generous gifts from Wild Carrot HERBALS called triple Tumeric Salve to help eliminate the redness and swelling in the few days following. Turmeric has been used for thousands of years in Ayurvedic medicine. It offers incredible anti-inflammatory and anti-fungal properties. It is also known for making skin tags, moles, and unwanted skin growths to fall off or disappear.

Embrace the color, it will be with you for a while but learned it truly IS an amazing product!

In the end, nearly 2 weeks after we started this adventure we are both THANKFUL and HAPPY to show you that Mermaid’s Nevus is no longer present on her wrist.

In comparison from day 1 to now…

Allow me to answer any questions I feel might arise… Yes, the redness will continue to subside. No, it will not scar. We will not be using the medication again until it returns and creates problems.

What the pictures cannot show you, is that Mermaid’s wrist is now smooth. No more callus like lesions.

Mermaid will even tell you herself, her owie is all better. I am thrilled with the results and so humbled that this was brought to our attention.

Remember I told you a friend, and fellow Nevus Mommy came to me privately with her own experiences. One major struggle for their families little is that she has a patch of nevus that grows so thick on her heel and foot it is painful and at times impossible to wear shoes.

Here are a few collages of their WartPEEL results. Knee, foot, ankle.

AMAZING!!!

It so important to remember while gazing through these pictures and trials that this is not just about cosmetic changes. Removing raised painful patches of nevus means comfort. Im sure you can imagine how painful it can be for everyone, both physically and emotionally, those mornings our little ones cried because their shoes hurt or the coat sleeve was too tight and rubbed. One small adjustment in their quality of life is worth every moment we dedicate time to a regimen.

This weeks score… Nevus 0… Mommy’s 2!

Thanks for walking with us today,

Mermaid’s Mommy

The Why?

Jun29

I recently attended an all day training for work, you know, the kind you dread for weeks leading up to it. (No offense to my company, its not you, it’s me). Lucky for me we had the best instructor possible and surprisingly, I took something away from it that I could apply to my personal life.

We were asked to separate into our workgroups and discuss why we ended up working in Healthcare. I always thought I knew and believed it was my own decision. Turns out after talking it out for a while my parents pretty much made that decision for me without even knowing it. All my decisions from school to company to department stemmed from their influence. I have to brag a bit too that one of the psychiatrist’s in my group had the best why ever, but I will spare you the details of our work why’s and get to how this relates to Mermaid.

I moderate comments on my site and occasionally I get a negative nelly that I choose not to publish. They think a post is pointless or disagree with my motive. So it got me thinking, what’s my why for Mommy’s Mermaid?

True, when Mermaid was first diagnosed with linear epidermal nevus I was devastated, I searched for sites and stories with substance about success. So one could argue that my why was to create that place and maybe it is a little, but I think its deeper than that.

Yes, I fully understand that my daughter is a healthy thriving young child and that my deepest anxiety’s of tumors, cancer or other abnormalities are slim, but they exsist. They are real possibilities. The more prominent concerns I hold are those of the mental trauma. Self esteem issues, embarrassment, ridicule for something she cannot control. An altered physical appearance to any degree can be more damaging to one than many understand.

I have had the pleasure of befriending several nevus owners and picked their brains about why they opted out of surgery, how they handled it growing up, and the limits it placed on them. I have listened to their fears and influences, and through those conversations, my why has come to light.

Do I really think that a $10 product from my local nature store or small business is going to cure Mermaid’s incurable disease? I dont know. Do I really think that relentlessly calling research centers across the country is going to spark a study of this underrated form of her disease? I dont know.

I say I dont know, because had you asked me 3 months ago if I would have a website that attracted 1,000 views in one day, relationships with organic business owners covering my entire state and be receiving gifts of products & support in my mailbox, I would have laughed.

I believe that we see what we want to see in every situation. I saw an opportunity to gain knowledge and bring awareness and its slowly coming to fruition. Yes, some of my posts may lack real data and seem silly to you. Maybe you think I am wasting my words, and to those of you who write me to tell me that, thank you. Thank you for pushing me to explore my why.

Why do I spend my time putting words to page that perhaps nobody will ever read?

As parents we put our all into our children. There is this well of love that pushes us to protect our young. When Mermaid gets older I want her to know that I did everything in my power to find relief, support, and strength from others living with the same blemish. I want her to walk with pride and not shame of her “birthmark”. I want her to know that she is not alone. If I can use my passion of writing to help soften the inevitable blows she will encounter, so be it.

So there it is. My why is not to gain followers, or find a cure. My why, is love.

I will continue to search for answers and post blips that may seem of little value to you. If along the way we make some friends, find some cool products and can use this network to bring awareness to ALL forms of Nevus, well I would love that just as much.

Now excuse me while I return a call to a research center here in Oregon that has taken interest in my inquiry.

Thanks for walking with us today,

Mermaid’s Mommy

Mommy's Mermaid

Our Journey

Tag Archive | Love

Every penny counts

Make a brushstroke

Synonyms of Giant Congenital Melanocytic Nevus:

She said yes!

3 years on land…

Our promise to you…

Holiday closure…

Peeling away our blemishes

The Why?