Tag Archive | skin disease

Fish out of water…

My Goodness, It’s been ages since we have given any kind of update, which might lead one to assume that all has been calm on the bay front but it’s actually the complete opposite! Spring led us to Doernbecher Children’s Hospital where we obtained some very useful information but between her short baseball season and additional appointments we have been noticeably absent from our virtual home.

We have many posts coming soon about all Mermaids new discoveries throughout Spring but today there is one main issue at the forefront of our fins. I distinctly remember one of our very first appointments a brief mention that “she may have some blockage of her sweat glands” and that was that; until now there has been very little thought placed on that statement but I never forgot. Summers have always been fine, she often claims she is “hot” on a regular basis and keeping clothes on her is a mission in itself but honestly, I chalked it up to being normal with NO concern whatsoever.

About a month ago we were at an outdoor birthday party, the day was especially hot for our area and the yard offered little to no shade. They had games with water balloons, plenty of cold fluids and ice cream so even though it was a scorcher, everyone tolerated it just fine. Mermaid has long been asking for a new play kitchen and the little girl celebrating her big #5 just happened to have one in the house along side her Mom’s real kitchen. Throughout the party I kept finding Mermaid in the house near that kitchen, My initial thought was that she just wanted to sneak off and play with it so I continuously led her back out to the party in the yard. She participated in a game where they placed water balloons on a spoon and had to run to the end of the yard and back without dropping their balloon. As I stood at the end taking pictures I noticed she seemed more flush than anyone else. When they were done she quietly went and sat on some steps by a bubble machine. I snapped a picture and when I set my phone down I noticed her color had drastically changed to a purple shade and her breathing seemed somewhat labored. I went from this is  just normal hot weather behavior to “Oh my Gosh what is happening”  in 2.7 seconds flat. I scooped up Mermaid and ran her in the house, she had no energy and I took her dress off as quickly as possible. For the first time in our lives I instantly knew what was happening. She was truly overheating. The left side of body where her nevus lives was bone dry and the right side was drenched. She begged me not to put it back on and began to cry. Within minutes I apologized and rushed her to the car and blasted the a/c. By the time we got home, almost 45 min later she was still roasting and eventually threw up. I felt terribly guilty for having her out in the heat like that and prayed it was a one time fluke.

Not so lucky, a few weeks later we were at a family members graduation party, again, it was a hotter than normal day for the PNW and we were outside. We were at my brother’s house and there was a bit more shade than the previous party plus they have a small pond that the kids typically flock too to catch frogs and tadpoles. More aware of her potential to overheat I kept a closer eye on her and just like clockwork, she went from fine to that scary shade of purple again within seconds. This time family was present and keeping an eye on her as well and because she refused to miss the chance of catching a frog we made her continuously return to the table for drinks of cold fluids, gave her ice cubes to hold and a wet cold rag to hold on her face and neck. Just as before the concern grew to the point that we chose to make an exit but this time left before it got so bad she threw up.

Below is a picture from the 2nd event, not the most flattering but imagine, the first time it happened her face looked WORSE than it does here!

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Just yesterday we went to visit my parents at an outdoor market where they had a booth set up, it was significantly cooler than the other two days that incidents occurred but still hot and I was very aware of the potential. She started out by sitting in my parents chairs eating some lunch we brought but shortly found a table in the shade behind their booth at a local restaurant. She seemed happy there but a worker quickly approached us and asked us to leave the table. I kindly explained that she would be done eating in 2-3 minutes and pointed out that there were multiple other open tables so I  bought Mermaid a short window but her retreat from the direct sun ended quickly.  We were not there long before she sat on the ground and proceeded to try to take her clothes off. I quickly stopped her and said No baby, not in public, when she grew weepy and said she couldn’t wear her clothes anymore. She proceeded to tell everyone she was too hot and that was my queue, off we went. Once in the car and a/c she used my water bottle to hold on her face and neck and kept asking me to turn the air on, despite the fact that it WAS on and cold enough I was looking for a sweater. Within minutes of being home she threw up. Daddy and I go her some cold ice water, a fan and had her lay down to rest while continuing to cool off.

So here we are, a random overcast day and I am reaching out. My gut says that this reaction is linked more to the EHK than LEN and is just now coming to life as her Nevus has slowly spread & thickened over her sweat glands on the left side. I can not find any direct information linked to her LEN that suggests this is a potential side effect but most Ichthyosis articles have share a direct link to overheating. Additionally, I read an interesting piece stating that the rapid turnover of cells in individuals with Ichthyosis require more energy thus meaning the host needs more calories to grow. Maybe, JUST maybe, this could be a link to Mermaid’s insatiable need to always be snacking like a teenage boy. I also cannot say that any of our followers with ILVEN or LEN have spoken to this directly and perhaps those with congenital, Giant or Ichthyosis can shed more light on this topic?

Mermaid falls in this weird category where she has three (One we recently received @ Doernbecher that we will share later) separate diagnosis working together to complicate the understanding and treatment. Is it simply that we need to acclimate her body leading up to summer or trips to warmer climates or is there truly no way to prevent it? Will sports be an issue? I am reaching out today looking for your expertise, tips & tricks to help us in our newest conundrum. I am at a loss as to who we should go to first to discuss it. Her PCP, her dermatologist or her genetic specialist @ the children’s hospital. Help guide us!

Coming up we have a new trial of a natural homemade cream thanks to a local friend, will dabble in some more salve making ourselves with intentions to get some out to a few of our special followers and a post about some other new discoveries added to Mermaid’s ever-growing list of diagnosis.

If you have experience in the overheating world please share your thoughts! We look forward to hearing your expertise and jumping back in to some nevus focused time!

Thanks for walking with us today,

Mermaid’s Mommy

MollyMadison making smiles!

We have so many talented people in our lives; from top chefs and bakers, to woodworkers and tanners. One special friend is a master at crocheting, you know… that thing with yarn.

Crocheting came around in the 1800’s and has long had a place in history. In the 20’s you saw it being worn in the form of hats & dresses then in the 40’s it became part of the wartime effort, women making items for the troops. In the 50’s & 60’s the art exploded, patterns blew up and you could find items nearly everywhere, if you have never checked out some of the crocheted clothes from the 60’s, you really should do yourself the service and look it up! It seemed to fade off a bit, the world was changing fast and it was kind of left behind, but not for long….

Today you can find blogs, websites, patterns, pretty much anything your heart desires to see and know about the crocheting world right at your fingertips on the world wide web.

There seems to be this age-old argument of what’s easier or better? Crocheting or knitting? I personally have tried both, and I personally can NOT do either one. It’s not my strong suit. Which makes me thankful to have someone in our lives that holds this talent!

In true mermaid fashion we received a gift from our friend Molly in the form of a mermaid tail. From the minute my Mermaid laid eyes on it she was in love. She hugged it and wouldn’t let go! We had to make a deal that at bedtime it was to be put up until the morning. I awoke to not only a Mermaid in my bed, but a mermaid TAIL in my bed! When asked how it got there she told me “It got up and walked here!!!”

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She loves her tail, and I love that it was made by someone special. The other day Mermaid came up to me in the kitchen and said “Mama, I don’t want my scales to go away”, I said good, because they’re yours to keep! her response? “because the mermaid’s made a spell that gave them to me!” and I told her that was right.

Her wanting to keep them is a far cry from a few weeks ago when she told me they were disgusting, so I will embrace it. The gift means so much to us, to have people that embrace her story and help cheer her on in all the smallest of ways warms my heart.

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We thank you for our gift!

Molly is truly talented and I encourage you to take a look at her online shop. There will always be new things added!

https://www.etsy.com/shop/MollyMadisonHOC

Thanks for walking with us today,

Mermaid’s Mommy

From hiding to Hollywood!

Mermaid’s disease has introduced us to all forms of Nevus, where occasionally we shed tears over the stories and difficulties everyone faces, we also get to celebrate.

Meet Marika Nagy from Manchester, a fellow member of one our support groups who got her chance to tell her story.

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My favorite line…

“My birthmarks make me special. The world would be a very boring place if we all looked the same.”

With Marika’s blessing we share her story, she is such an inspiration to all of us!

Click below to read her story on the daily mail!

http://www.dailymail.co.uk/femail/article-3809507/Girl-coverered-birthmarks-bullied-looking-like-cow.html

Marika – we look forward to seeing you on the big screen!

Thanks for walking with us today!

Mermaid’s Mommy

Lean toward happy…

Those of you that know me personally, know that I am a huge baseball fan. Where my team’s season is about over with basically no shot in the series I will still be glued to what’s happening all October. I recently read an article rooting against the Cubs to take the World Series and before everyone in Chicago gets upset at me for agreeing, let me tell you why. You see, the Cubs haven’t won a world series since 1908. Yes, they deserve their moment in the limelight but if they win, we lose one of the last connections to old-time baseball. To me, the time of the greats. The time where players were heroes, before other sports dominated the world and baseball was the leader. If they win, what will they grumble about for the next 100 years? I love this writers perspective, but win or lose, I love the sport.

There is a special little boy named Dylan who also has a love of the sport and right now, he needs you to help him hit a home run this October. October 3rd Dylan will be going in for his 27th… yes, you read that right, TWENTY SEVENTH surgery.

Dylan was born with Giant Melanocytic Nevus. A rare condition found in 1% of infants. Additionally he has Neurocutaneous Melanocytosis (NCM) which means he has it in his brain and spine as well.

Dylan’s form of Nevus runs the risk of melanoma and to help prevent that he will yet again, be undergoing another surgery.

In the photo on the right, Dylan is holding a picture of his friend Christian wrapped in the Lord’s arms. Christian and Dylan became friends when Christian was only 6 months old. This week marks Christian’s 2 year Angelversary. Christian lost his battle with Melanoma that was present in his Nevus at 19 months of age. I speak frequently about the potential side effects and our fears, our family has also endured the loss of a friend to Melanoma but Dylan’s fight reminds us all too much of those painful realities.

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(Dylan and Christian a few short months before Christian’s passing)

Christian’s Mom shared with me that the two boys and families became fast friends, following Christian’s passing Dylan even stood in her wedding. His Mom wanted me to share with everyone reading this that even in his darkest times, Christian was always happy. A doctor on the palliative pain team at children’s hospital said he’d never seen a baby so good spirited. He said ” no matter what gets thrown Christian’s way, his natural inclination is to ‘lean toward happy’… its remarkable, really!” That stuck with Christians Mom and has been a huge piece of her grieving. When things get tough, she remembers Christian’s resiliency and leans toward happy.

We NEED a cure for Melanoma. No family should endure what either of these boys families have, whether it’s in the form of loss, or prevention.

I was talking with one of Dylan’s parents today and I felt silly for my worry surrounding Mermaid’s nevus. She gently reminded me that we are all on a different journey, and she is right. We all have struggles and concerns valid to our lives. Some bigger than others, but in no way, shape or form, does it make any of them less.

As I’m sure you can imagine, with surgery comes cost and time off of work for his family. He has an amazing family that has done everything they can, and will continue to do everything they can to ensure his wellbeing. Right now, it’s our turn to help ease their burden, just as they have done for Dylan his entire life.

Dylan’s family has put together a fundraiser where they are selling water bottles and shirts to raise money to help offset some of the cost following surgery. You can donate or order using the link below.

http://fnd.us/01ASMb

I know we can’t always give by way of money and sometimes the biggest gift is that of prayer. So as October rolls around, keep this little slugger in your thoughts, give the family some encouraging words and tell them Mommy’s Mermaid sent you!

You can read about the specifics or follow Dylan’s story on his own personal facebook page at:

https://www.facebook.com/DylansAmazingJourney

To follow Christian’s mom on her path of recovery and learn more about his short but meaningful journey you can go to:

https://www.facebook.com/ChristiansSpecialSpots/?fref=ts

To Dylan, you are stronger than most people I know, you will heal and once again amaze us all. I have no doubt that Christian will be by your side through your entire process. You will be back on the ball field before you know it, and think of it this way, while your home healing, you can enjoy the world series! You will be in our thoughts and prayers before, during and after your surgery.

Tanya, Kara and Nikki – your strength is far from unnoticed. To Tanya and Kara, I want to thank you for trusting me with you stories, emotions and lives. I think I will forever remember to “lean towards happy” when I am having a rough one.

“Our wounds are often the openings into the best and most beautiful part of us.”
David Richo

Thanks for walking with us today,

Mermaid’s Mommy

A threenager’s thoughts…

Most days our lives mimic other people’s with a toddler, trying of our patience, astonished by the next big accomplishment, mortified by the new sentence or phrase they picked up, tiring as we fight sleep, attitudes, messes and defiance, and quite possibly the most beautiful experience we will ever have. I find myself constantly in awe of what my little being is teaching me and often forget what life was like before she was here. I joke that I want quiet and moments of solace but when I get them, I feel partially empty. I have learned that the pure chaos she brings me, is just what I always wanted.

Then there are times when I am reminded that unlike other people’s lives with a toddler, our journey is slightly different. Where her disease in no way, shape or form prohibits her from anything in life, it occasionally rears its ugly head and forces us to face it dead on. Sometimes that’s in the form of an appointment or treatment, but tonight, it was in the form of words.

As we were finishing bath time I asked her to lift her arm so I could use our special soap on her scales and very matter of fact she said “My scales are disgusting.” First of all, disgusting? Big word for a little girl. Second of all, how, why, where would she have heard something like that? but lastly, ouch. That hurt Mommy to hear. I replied just as matter of fact by saying “No they’re not, your scales are beautiful.” To which she replied “Thank you Mommy, but they’re disgusting.”

I opted not to argue or acknowledge her second statement and just moved on. I told Daddy what she said and he frowned. It seems harmless but it’s so far from that. My two biggest fears are of course, cancer, be it in the form of a wilm’s tumor or melanoma and her being embarrassed or uncomfortable in her own skin. Were blessed that for the most part, her nevus is hidden beneath her clothes and the ones that aren’t are hard to spot with the naked eye unless you know it’s there or are looking, so to this point we have had very little interaction with the public making much of a fuss. So where did she get this idea? Yes, she is three and they come up with the craziest things, half the time she doesn’t even really know what she is saying, but she was so matter of fact about it.

I think back to our first days after being diagnosed and how plagued I was by the thought of this very scenario. That one day, I knew she would resent her disease. That one day I would be trying to reassure she was beautiful even with a few blemishes, but not at THREE. My hope is that by not engaging in it, telling her I love them and moving on it gets out of her head, that she sees I don’t fuss about it.

As her Mom it completely ruins me inside. There are so many other things life she will have to overcome, things she will have to give all her attention to overcome that I never want this to be one of them, though I know that is only wishful thinking. It’s hard enough as a woman to live up to what society thinks we “should be” that I fear the additional hurdles she will face as her nevus continues to spread. I suppose at some point it was bound to happen, I just wasn’t ready for that time to be now.

Her timing is odd considering right now, it looks the best it has in months. I think the cooler weather is limiting the irritation and amount of flare-ups we have had. She has complained maybe once recently that it was bothersome.

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So to all my parents out there, nevus or other skin conditions, what do you tell your little one’s when they say stuff like this? How do you address their remarks about themselves? I look forward to hearing your expert advice!

Thanks for walking with us tonight,

Mermaid’s Mommy

New adventures…

This past week we said our farewells to our favorite Physician who has chosen to depart our health care organization and explore other options in this crazy thing we call life. Where selfishly we are sad, we are excited to see where his next adventure leads him. It feels like we have been saying a lot of goodbye’s lately but it’s not completely surprising. We are home. Most physician’s take jobs far from their roots and eventually life leads them back home. I have long thought that any decision that puts your family first, is never the wrong decision. Medicine is a tough world to be in, appointment times are getting shorter, enrollment increases, demands skyrocket and all the while we try to do what we can in the given time, but its never really enough time. It’s stressful to say the least. There are a million reasons one chooses to leave, we are just sifting through the emotions of seeing another fantastic person go.

I had to ask myself why I am so upset about his departure, yes – we have been with him for many years now and he has been with us since day one with Mermaid, but it’s not the length of the relationship that brings me down. I’m not one to feel overly impressed by a degree or status. knowledge is helpful, but even in the beginning he let us know he would be learning with us when it came to Mermaid and I respected that honesty. You can be the best scholar, have rotation experience beyond your coworkers, years under your belt, but is that all that matters? So what is it? It was a different relationship, I never felt like I was a number, he listened, understood where I was coming from and trusted my thoughts that weren’t always traditional. On our last visit he mentioned me wanting someone who would think outside of the box and he nailed it on the head. I have a daughter with an unconventional rare disease, with little to no treatment, it forces me to think outside of the box when it comes to treatment. With little knowledge in the medical world I lean on all of you along with extensive research to help guide us and he respected that.

I have spoke briefly about my rough pregnancy and struggles that followed after birth but not a lot of detail, saving that for a different avenue I’m working on, but he was there through what feels like the roughest 3 years of my life, physically and emotionally. When Bailey was diagnosed, I was heartbroken, when her specialist declined to perform a biopsy, he did it. It may have been a first on such a little one and he did amazing. When I needed a signature for one of our unconventional treatment ideas he signed it, and again to hold onto at our last visit for future use, despite recently being denied by someone covering because they felt uncomfortable with it. When I felt crazy after having Bailey and cried every single day from the pain I was in, he helped me through it. When my options ran out and it led to my hysterectomy, he was there for anything I needed leading up to it and after as we sift through the last leg of remaining symptoms. The thought that I have to start at ground zero with someone who won’t fully understand the level of despair and need we had been at is hard to swallow. Yes, I cried in our last visit.

We are nearly the same age and did  lot of life events close together, marriage, kids… it gave us more to talk about than just “what can I do for you today” and I always appreciated that. No, I have never been one to be overly impressed by a degree or status, but I AM impressed with how someone treats you. We spent most of our last visit talking about life, where we hoped both our paths would lead in the coming years and it was bittersweet.

Mermaid was snapping pictures with her tablet as we talked, it was borderline creepy, but she was entertained and honestly, it’s probably my fault for taking pictures literally 24/7 so I couldn’t blame her. Now, I’m glad she did, where she really needs to work on her skills, I suppose this is how a 3 year old views her visit.

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Don’t get me wrong in reading this. We have an amazing support system. Immediate family, extended family, work family, friends, my amazing husband, we truly are blessed, but there are some things your support sytem can’t do for you. You know, like the medical side of things. To so many people reading this I know you understand what it means to find that right Physician, someone who you trust, in our case, someone who felt like a friend, I know you are keen to how important it is in our world, and when it goes away, we all feel a little lost.

To our favorite Physician, may you ever lay eyes on this… and don’t feel like I made it clear,  Thank you. Thank you for being our rock, our advocate and always treating us like people. Whether you feel it or know it, you are an amazing Physician, as you know, I have been around a long time and I put you in that handful of exemplary people to walk into my Kaiser world. Whether you choose Medicine or a different road, keep that bedside manner. Continue to get to know people and truly show them you care. It will take you far.

To all our readers, so much of my knowledge never would have happened without that biopsy, it led us to a true diagnosis and the Yale study, without that signature we never could have shared the incredible results of our wartPEEL trial and without his helping hand I personally never could have gotten to the place I did to start this whole adventure. Wish us luck on our journey to find our next cohort on this wild ride.

Onward and upward to our next chapter.

Thanks for walking with us today,

Mermaid’s Mommy

Tides are changing…

A few weeks ago Mermaid was playing on the floor and her arm looked dirty, I asked her if she had been outside and what she had gotten into, as I got closer, I realized it wasn’t dirt at all, but Nevus. Then today, after bath time, I noticed even more changes and thickening. It seems as though overnight her Nevus has completely morphed.

I put together some comparisons and when I looked at our pictures from the first year, it amazed me that I was so upset, it seems so minor compared to now.

I have always hoped and prayed that Mermaid’s Nevus would not continue to spread, as I am sure all of us effected by Nevus have, but I knew deep down inside, that it would. I just didn’t expect it to happen so fast.

Mermaid now has a more prominent line from under her arm to her wrist, new growth on her hand, top & bottom (which is the one I fear will require surgery) and thickening on both her elbow and underarm.

Here are few of the changes…

New growth on arm:

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Elbow: 8 months apart

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Armpit: 8 months apart

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Armpit: Ages 1-3

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We have a dermatology appointment coming up and I will certainly be asking for more information about possible triggers that stimulate growth.

We have added some new pictures under the photos tab of both Mermaid’s Nevus and a friend’s. The progression is interesting to see.

Coming up this week we will have a story about a fellow member of our ILVEN support group so keep your eyes open.

Thanks for walking with us today,

Mermaid’s Mommy.

Sun’s up…

It seems like only days ago it was near dark as I drove home from work. I’m use to it spending the majority of my life in the Pacific Northwest, and don’t get me wrong, I love it here, I have tried living other places only to miss my four distinguished seasons; but this year I seem to be ready sooner than most for longer days.

Nearly overnight we went from being stuck inside from 5:00 pm until the following day, to not even thinking about stepping foot inside until close to 8:00. The past few nights we have witnessed the signs of summer creeping in. The neighbors came out and we shared an evening walk/bike ride, dinner on the patio, lawns being mowed, flowers blooming, birds chirping… It’s as if new life has taken form on our sleepy country road.

Those that know me well; know one of my happy places is surrounded by our friends. Many of them I consider family. The first sight of sunshine and I was already planning a BBQ. Yes, I love our friends, but their presence is so much more than just company. These are the people who stood beside us as we said our vows, paced the lobby with my family when Mermaid was refusing to join us in the world, cried with us when we lost loved ones, supported me when I said I have this crazy idea to start sharing our life online, reached out and waited just as impatiently as we did for Mermaid’s diagnosis, get us through our days when we are away from our family and did all of this, plus countless more, not because they had too, bound by blood, but because they wanted too.

(Don’t worry those of you that couldn’t make it, we feel the same about you!)

We are blessed ten fold to be surrounded by people who despite our individual religious or political views, despite where we came from or where were headed, continue to make that choice in walking with us. I have spoke before about how important the people we walk through life are, they have helped shape who we are today and who we will become tomorrow. They are a solid. It’s important to me to show that solidarity to Mermaid, to show her that from the beginning she has had all this support. That despite her differences, she is now and always will be surrounded by a solid. If we can teach her now, the importance of building those meaningful, lasting relationships, she will build that for herself when we are no longer responsible for her surroundings.

I took a brief moment to stand in the kitchen, veered past the dried out yellow rose in my window sill, and watched life happen from a distance. I saw one of our Groomsmen catering to a 3 year old child he felt as his own, a couple well on their way to beginning life – attempting to have a child, a former co-worker turned best friend laughing a belly laugh I hadn’t seen in quite some time, my soul sister watching her new love with gazing eyes, Our responsible DD on duty waiting for her next call indulging in everyone’s antics, Newer friends sliding into the madness as if they had been there forever.. I paused, took it all in… and rejoined life.

I hope if for nothing else in this world for my Mermaid, that one day, she too, will look out her own window and see  how grand life can be. That for small moments in time we are all connected, all the same, despite how different we really are.

I started this post the night after our BBQ, above is as far as I made it, I had a better ending, I had a real connection to my point, but that fell short by one of the people I gazed out at…. tragically losing their life the following day. I have hesitated to post this, perhaps it would feel inappropriate in the wake of life’s events, drudge up hurt or sorrow, but I decided to finish. Afterall, our journey, be it Doctors appointments, public shame, questions, is what I signed up for. I took an oathe to myself and or readers to share our journey, so I will now try to conclude.

Many moons ago I met an amazing young woman, we went to college together. We started within a short time of eachother at the same company, in the same department, with the same doctors. Our professional connection means little. I honestly cant remember a time in my life where said person and I couldnt pick up the phone and hash out lifes issues, Through weddings and babies, SO many crazy nights, our “crew” moving away, making new lives, and finding ourselves, we were there.

I hadnt seen her happiness shine through the way it did that day in a long time. They were the couple starting a new life – attempting to have a child. Her better half lost his life in a tragic motorcycle accident the following day. For someone who feels pretty confident in their words, I don’t at this time. I wish I could say that things get easier with time, I can’t. I want to text, call, show up and think that my presence makes it better, but I know it doesn’t. I KNOW more than anyone could ever possibly imagine that an event of this magnitutde leaves you stranded.

Here is what I will remember, on a sunny day in April,  rare to the pacific northwest, I got to laugh and share about life with the person that made her so happy. We shared not only a Birthday month, but a work anniersary. That for a brief moment, I stood back and watched, I saw, I know, what happiness is.

I cannot give the happy ending I intended this post to have the way I would like too, but what I can do, is promise you, promise you all, anyone that takes the time to read this, that whether you know I feel it, or see it, your presence, big and small, gives me hope for better days. Your mere presence gives me the strength to continue writing about our journey and know, to really, really know, that Mermaid has the best most amazing foundation anyone could ask for.

Our random April get together was sporadic, it was fed by my own selfish need to feel the rays on my back and the love of our friends, and it will forever remain that.

I will share with Mermaid, later in life, the people that made me… well… me… and to everyone present, know that you too, will forever be a part of our solid.

Cheers to sunny Saturday’s.

Thanks for walking with us today,

Mermaid’s Mommy

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Happy Birthday Mommy’s Mermaid!

Today officially marks ONE YEAR of Mommy’s Mermaid. I want to start by thanking each and every one of you that are reading this now, and anyone that has ever stopped in to see what we are up too. Without you, we would not still be here.

I had this idea for a while before starting it and one night decided just to jump in head first. I knew absolutely nothing about the blogging world. I had no idea how to start, how to get eyes on my writing or how to share our journey. I am still learning but have found a few avenues to help gain publicity and for that, I am ever so grateful.

I knew if it was going to flop I would know fairly quickly. I remember my first month having nearly 500 people stop in to visit and I was floored. I decided to set a personal goal of roughly 10,000 visitors by our Birthday. If I hit that number, or anything even close to it,  I would know my time and energy would somehow be validated. Well, guess what? We hit it!

The past year has taught me so much. I think of a quote by C.S. Lewis…

“Isn’t it funny how day by day nothing changes, but when you look back everything is different.”

It’s so true, I felt nothing change but as I look back over the past year it’s all so different. Mommy’s Mermaid re-sparked my desire to write. It went from an idea on the chalkboard in my kitchen to a part of our family. As long as I can remember I loved to write. As a school age child I wrote a Children’s book, in Junior High I started writing poetry, High School I did a lot of free writing, had a small gig with a local newspaper and journaling; and as a young adult I had this burning desire to tackle a book. Life happened, I went through a lot personally as a young adult. I experienced a massive amount of death, had some pretty terrible things happen to me which I will choose not to delve into and I did not deal well with any of it, I spiraled a bit and spent years not caring about much of anything. To put it bluntly, I was a hot mess. I needed that though, I needed to stumble to show myself I could prevail. It might not make sense to you but I am the type of person that loves with everything I have. I might not say it on a daily basis or shout it from the rooftop but I feel it. Everything I experienced left me broken and empty. I spent a few years repairing myself and some of the damage I had caused and more recently learned to let go of some of that grief. I found my passion again through Mommy’s Mermaid.

This past year as led me to some pretty amazing acquaintances and friendships. I look forward to the day so may of us get to meet in person. Multiple local businesses have sent me products and encouraged me to continue our journey and Mermaid herself has become aware of her “scales” and her “computer self” and loves to help Mommy create and try new “special soaps” or products.

My original plan was to write about what we knew, Linear Epidermal Nevus, but over time I realized that there are so many different forms of nevus that many of us would never know existed without the internet to connect us all. There are so many things we can do together to help change the face of this disease. Number one, awareness. The psychological effects from owning a nevus alone can be devastating. For those challenged with syndromes and physical complications it can be life altering and life threatening. We have an opportunity to raise money for those families needing to pay for medical expenses, time off work and trials. We can help support research to hopefully one day, find a cure, be it for those who develop cancer or simply for cosmetic purposes to decrease mental health issues. Over this past year I have realized that Mermaid’s disease is next to nothing in comparison to others, but the existence of it is what started this all.

I have learned that simply writing about the “facts” – what the diseases are, the potential complications, testing involved etc. is not so captivating. To those with the disease it’s helpful but those without need a different connection to help understand where we are coming from. Writing about our daily experiences with others, sharing stories of other nevus owners and putting bits in about our personal life gains the most interest. So much of this disease is navigating the day to day changes, one day can be unbearable while another you can completely forget it exists. Where you may not focus on the physical challenges daily, we monitor the emotional challenges non-stop. Being able to connect with our readers on a multitude of levels is imperative, even if that leaves us vulnerable at times. Again, I thank you for your interest in our story.

Over the past year we have learned about and gone through the biopsy process, vision concerns, eye testing, participated in research, met fellow nevus owners in person, shared trials and experimented with some heavy products, shared other peoples stories, raised some money for a few families and opened up our lives very publically. Through all of that, my favorite moments are still the random messages thanking us for speaking so openly, people reaching out with their stories and those just wanting to talk. Being the parent of a Nevus owner sometimes leaves us feeling helpless so the fact that ANYONE would choose me to reach out to just to talk is humbling.

I have a pretty drastic idea for a big change coming to Mommy’s Mermaid over the next couple of months and if I choose to take the plunge I hope you all come with me, until then, I will continue plugging away and bringing you as interesting of material as my brain can conjure up; and who knows, maybe this will be the year I finish a book!

We are eternally grateful for all your support.

Thanks for walking with us today,

Mermaid’s Mommy

Are Mermaid’s real?

Only 5 days until our 1st Birthday and our week reminiscing about the past year together continues. Tonight we are going whimsical and sharing one of our all time favorite posts, A Fish Tale.

That was such a fun experience and definitely humbled us. Never saw it? Read it, but don’t remember? New to us? Take a peek!

https://mommysmermaid.com/2015/10/05/a-fish-tale/

To see more work by Kinna Clark go to:

http://www.geminiIImages.com

Thanks for walking with us today,

(and those of you in the PNW, enjoy that sunshine!)

Mermaid’s Mommy