Tag Archive | friendship

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

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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The Why?

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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.

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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

Do Mermaid’s wear glasses?

I have never had any concerns about Mermaid’s vision, I figure if she can get up at 2 am, navigate to the fridge, get the juice and bring it to me in bed all in the pitch black, we are pretty safe. However, a specialist at OHSU (Oregon Health & Science University) advised we see an opthalmologist to check for any abnormalities. This was conveyed to us at our last check up with her normal Dermatologist.

Why you ask? Well, there is a syndrome connected to Mermaid’s condition called Epidermal Nevus Syndrome.

Epidermal nevus syndrome’s are a group of rare complex disorders characterized by the presence of skin lesions known as epidermal nevi associated with other abnormalities. Most often affecting the brain, eye and skeletal systems.

The ocular abnormalities may include cataracts, clouding (opacity) of the cornea or partial absence of tissue of the iris or retina (colobomas).

I was lucky enough to speak with other parents in our support group that had experience with this and see some pictures of “keyholes” in their little ones eyes. Going in I felt confident we would be cleared of any abnormalities but there is always that chance. Below is an example of what a Keyhole may look like.

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We could not have been blessed with a nicer Dr. She sat on the floor with Mermaid, used puppets and let her play with all her instruments. It was fairly lengthy as they had to dilate her eyes with tests before and after but because the staff was so great she was a superstar. The 2 suckers and stickers didn’t hurt either.

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We are happy to report that Mermaid was cleared from both cataracts and colobomas at this time. She does however, have Myopia.  She scored slightly under where a child of her age should be on the diopter reading meaning that she may end up needing glasses.

Wait! A mermaid that is nearsighted? How can this be? Mermaids need to see through the ocean waters, they don’t wear glasses, they CAN’T be nearsighted! They just can’t!

Or can they? I found this little gem today and feel as if it was written just for Mermaid and I.

 

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When Oliver’s explorer parents go missing, he sets sail on a rescue mission with some new, unexpected friends: a grumpy albatross, a nearsighted mermaid . . . even a living island! But the high seas are even more exciting, unusual, and full of mischief than Oliver could have imagined. Can he and his crew spar with sarcastic seaweed, outrun an army of sea monkeys, win a fabulous maritime fashion contest, and defeat a wicked sea captain in time to save Mom and Dad?

Did that just say a NEARSIGHTED MERMAID? I am already inpatiently awaiting our new book and will be watching my mailbox like a hawk.

I must admit, the thought of my Mermaid in glasses is too adorable.

A little myopia is nothing, today is a good day. Mermaid 1 – Nevus 0!

Thanks for walking with us today,

Mermaid’s Mommy

 

 

 

 

 

 

The difference in you and I

 

 Adult relationships are far different than those we held as children. We no longer have to give every child in our class a Valentine, could you imagine the confusion on the IT guy’s face when you handed him a big heart card with a puppy on it?, we don’t have to stand in a single file line when traveling from one place to another, might be odd to line up for lunch and potty breaks these days, and we certainly don’t have to “buddy up” with the kid in the class that called us names during recess the day before. We now get to choose who get’s our Valentine, who we walk with from one place to another and who we buddy up with.

  In thinking about the people I have chosen to walk with I note such vast differences. For some of us the happiest place on earth REALLY is Disneyland, for others it’s a concert with a microbrew, and for some of us it’s anywhere our children and/or spouses are. Some of us are quiet and mythodical in our thinking, not responding until we have thought things through and others quick to speak. We are made up of diabetes, birth marks, scars, missing organs, eczema, depression and that’s just to name a few.

  I personally am the quick to speak, a bit more brash than others, the complicated unpredictable type. I am a NY Yankees fan in the pacific NW, have a soft spot for saddle shoes, still think 90’s grunge is the greatest genre of music, have a small obsession with the mafia and secretly wish a mini horse lived in my house.

  When I was younger I traveled a lot and spent years in several different states. These travels were where I learned the true beauty of accepting ones differences. I remember moving 1500 miles from home and everybody I met had just done the same. We were a hodge-podge of transplants light years from being on the same page. So we had 2 choices, embrace one another or be alone. I will never forget one of my friends telling me she left home because she just wasn’t the same as everyone there and she needed to find people more like her. I understood because I felt the same way. To be honest, I don’t think either of us ever found those people just like us, but I know for a fact what we did find, was acceptance. Sometimes, that’s all we need. Knowing that no matter how we look, act or that what we believe in will not make us an outcast but make us unique and special comes with comfort. Having my differences accepted led to some of the greatest adventures and friendships ever made.

  So what does this have to do with my Mermaid? EVERYTHING. My recent pondering reminded me that she too, will be different. Different from me, different from you and different from 999 out of 1,000 people in a crowd. How I teach her to own her differences is going to impact the people she chooses to walk with.

  I feel confident that the people beside me will help to encourage my daughter through her journey and always remind her she is beautiful because they too, are different and understand that. I also know that will not always be the case. She will be faced with challenges and need to learn on her own how to overcome those.

  So tell me… when faced with difficulties due to being different, whether it was yourself, or your child, how did you handle that? How have those of you dealing with a “visible difference” moved through life with confidence?

 

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Friendship is born at that moment when one person says to another: ‘What! You too? I thought I was the only one. ― C.S. Lewis

– Mermaid’s Mommy