Archive | April 2016

Opposites attract….

I owe my readers an apology, this month has been… well… shitty.  I have had so much negative and sorrowful energy surrounding me that I have failed to keep up with Mommy’s Mermaid, failed to return messages via FB, text & email to people reaching out and failed to really be present in anything. I am far from a stranger to tragedy or heartbreak but these past few weeks consumed me. I allowed myself to be sucked into things that were and are completely out of my control. It’s ok, we all do it, I know this, but why right now, do I suddenly feel like a weight has been lifted off my shoulders. Perhaps I wallowed in self pity long enough that it got old, maybe I realized things would slowly turn around, or maybe… it took one tiny small event to shift the waters.

Friendships are formed in the oddest of places. I have formed one with a fellow nevus Mommy on the complete opposite side of the country. Opposites attract right! Over the past year or so we have talked late into the night about life, family, our kids, this disease we despise. Shared products, ideas, information from our dermatologists, happiness and our anger.

A few nights ago a conversation started and things were said that changed my outlook. This friend of mine told me about her recent frustrations and shared about their Dermatology  visit that day. Their Physician told her that everyday she writes down four things that make her day great, and today, she would be one of those four. She told me she should start doing the same and that today, I was one of her four. She shared with her physician how much our conversations meant to her.

It’s mind boggling to me that I could be of any help/support to anyone, let alone be one of the great things in their day when I was struggling to find just ONE great thing over the past few weeks…. and that’s where it changed. Yes, I have been sad, I have been a big hot mess, to be honest, I’m not sure how I even managed to appear normal the past few weeks, but somewhere admist my travels down the rabbit hole, I gave enough to make someone elses day great.

It reminded me that no matter what we are all going through, despite our own depiction of what we are, we are ALL effecting one another. Take that in for minute…

Pretty wild isnt it? The smallest of gestures or words can completely alter ones mindframe.

Funny thing is… every time we talk, she is one of my four great things in my day. There are few people that understand Mermaid’s disease, even if they think they do, they dont ask about it or truly understand the fears that coincide with it… and they shouldnt have too. That’s my job, our job, as Mom’s, to carry that worry, to work together to not only build the confidence in our children about their “beauty marks” but build the confidence in one another to be that source of strength.

This disease cannot be cured by lotions, diet changes, medications or heaven forbid; surgeries. It’s here, to stay. Some barely noticeable to the eye, others… plagued with what others consider “unsightly”. Until you live it, I’m not sure you will really truley understand the feelings behind a child asking you to make it stop, to – in Mermaid’s words “take me to the doctor so he can take my scales” to a sobbing little one from the itching and pain or that dreaded call of being told you or your child has in fact developed complications.

What we cannot fix, we can absolutely, undeniably make acceptable. We can make this disease always be number one on our list of great things that happened today, for without it, we would not have learned the level of compassion, strength and protection we all own.

We often forget that where we cannot always control the things that happen around us, we CAN control how we react and handle them. I for one, was quietly reminded of this. Mermaid’s disease is often a foot note in our journey, especially these past few weeks, but wherever our path is heading, I am happy to have you all on it.

To my fellow Nevus Mommy, my friend and my late night confidant, I thank you for sticking by me, for encouraging me, and for always being there to sort things out.

I challenge everyone reading this to write down four things that made your day great.

We have a lot of great nevus stuff coming up, making a home remedy, the discovery of a new medication and some great events to share so forgive me for our brief absence but stay tuned!

Thanks for walking with us today,

Mermaid’s Mommy

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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