Tag Archive | oregon

Mermaid’s Ashore!

To most people, Portlandia is just a quirky show poking at the oddities of Portland, Oregon. I have to admit, “put a bird on it” and “the dream of the 90’s is alive in Portland” are genius and crack me up every time I see them but most of it is beyond me. We live in a small town East of the city and trips there are rare.

Where I may not frequent Portland these days, being born and raised in this great state I am very aware of who “Portlandia” really is. In the midst of downtown in a rather modest location sits the second largest hammered copper statue in the United States, right behind the Statue of Liberty. At 34 feet 10 inches tall a woman holding a trident reaches down to the people below her. Portlandia was modeled after the city’s seal which also boasts a woman holding a trident.

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The trident is known to be the weapon of Poseidon, the God of the seas, and Neptune, the God of freshwater and the sea. As a city that was once known to be the number one place in the western hemisphere for “crimping” and “shanghaiing” amongst the sea captains and sailors, a city that’s known for it’s beautiful bridges spanning the river, a city that boasts the amazing dragon boat races, has a waterfront walkway that hosts festivals – bike riders – walkers – runners – fountains and those just gazing at it’s beauty and a city who’s access to the water make it an easy port for transportation of goods; once known as one of the most dangerous ports in the world; it seems only fitting that it has a protector in Portlandia watching over the city.

With so much action on the water it was only a matter of time before it hosted it’s own Mermaid parade.  On July 30th Una the Mermaid & the travelling Fanta-Sea Cove organized Portlandia’s first annual Mermaid Parade.

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Those familiar with us can only imagine the excitement in my household upon hearing this news, those new to us, let me explain.

My beautiful daughter was born with a rare genetic skin disease called Linear Epidermal Nevus. It’s complicated, it comes with a laundry list of potential complications including skeletal, ocular and nervous system abnormalities. Has the potential to cause both benign and malignant tumors, raises the risk of melanoma, and in our case, may potentially take over the entire left side of her body. At first we were devastated, plagued by the “what if’s” and lost due to the lack of information and medical knowledge surrounding her disease. Over time we found some support groups and started this blog to share our journey and connect with the world to both learn from them, and share what we know. It’s hard to explain to a child what’s slowly growing on their body, we joked that her “scales” were from her previous life as a fish. A friend said to us, can’t you find something better? Like a Mermaid? and it stuck. From that moment on she became Mommy’s Mermaid. As she has gotten older she has told strangers, doctors, friends and family about her Mermaid scales, she whole-heartedly believes that they were a gift from a Mermaid. She believes they are a special and wears them proudly.

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An opportunity to take her somewhere full of Mermaid’s, those magical creatures that shared their beauty with her, to walk amongst them and relate, could not be passed up. I had no idea what to expect, I thought it would be small, generic, cute but nothing to write home about. I could not have been more wrong. I know now, that I need to start preparing for next years event! Mermaid could barely contain herself as we got ready, Mama are we leaving yet? Mama, are we ready? Mama, can we pleeeeaaaaasssseee go now. As if she knew just how special it was going to be.

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We were blessed to have a friend and her little one in tow with us, with the girls in wagons we headed to the historical waterfront, the friendship circle to be exact. The friendship circle celebrates the sister city relationship between Portland and Sapporo, Japan. The Friendship Circle includes a pair of 20-foot stainless towers that generate electronic tones. I can only describe it as nothing shy of magical. Men, Women and children of all shapes, sizes, and ethnicity filled the gorgeous backdrop of Portland in full costume. There were people giving out gifts, bubbles, shells, dancers, birds, artists and even a man fishing for Mermaids with a cat on his line.

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We flipped down waterfront passed Saturday Market and the Brewfest. People lined the path taking pictures, videos and cheered. After the parade we took some time to enjoy the city and played in the fountains!

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We get caught up in the daily grind, I often forget to take moments to stop and truly let myself enjoy the beauty of imagination. Mermaid’s disease will be with us forever, there is no cure, very little relief for symptoms, and at this time – minimal research or trials to move in a forward direction. If allowing my 3 year-old to believe that she was gifted her scales by a Mermaid gives her even one small ounce of happiness in this journey, I will believe it too.

To the amazing group that made this dream a reality, to every single person that came to celebrate and to our honorary Mermaid’s Geneva and Charlee for walking this path with us, I thank you all. This parade meant so much to us. As magical as I saw it, I can only imagine what my little girls thoughts were.

There are no words to describe the beauty and creativity that was bestowed upon us that day but thanks to the talented Christelle Morgan who has graciously allowed me to share some of her work, you can enjoy some of the sites from our day. Enjoy!

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You can find more information about the wonderful Christelle and her work at:

cmphoto.smugmug.com

To learn more about Una the Mermaid you can visit her site at:
Thanks for walking with us today,
Mermaid’s Mommy

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.

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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

Our promise to you…

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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

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Butter makes everything better

It was like Christmas when I got home today and found a package addressed to me on the other side of the gate. I had that package open before even turning the car off in the driveway!

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Inside were quite possibly the cutest little packages of products for my Mermaid to try.

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An Oregon herbal company named Wild Carrot Herbals generously sent me 3 jars of their products and a trial size “gaia goo healing salve”. They were referred by another Oregon company called Camamu who’s soap I am trialing.

Below is a list and a small description of each treasure.

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#1. Triple turmeric salve : for thousands of years, the bright yellow powder known as Tumeric has been used as a powerful anti-inflammatory and for its anti-tumour properties.

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#2 Borage butter eczema cream: created for the sensitive ones in our lives – and conditions such as eczema, hives, itchy, or very dry skin.

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#3 Rose geranium & spikenard: Suggested for fungal diaper rashes, ringworm, infected fingernails and even odorous feet!

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#4. Gaia goo healing salve: An all purpose salve, useful for scrapes, cuts, chafe, poison oak & scars. Safe for the whole family.

Wild Carrot HERBALS is located in Enterprise, Oregon. Their goal is to create honest, nutrient-rich, joyful products that are reasonably priced for the entire family.

I am overwhelmed with the generosity of this company beyond appreciative of their interest in our journey to find relief.

I am going to add the borage butter to my list of trials. I will post each product as I finish and archive them as well on my “Got any secret solutions?” Page.

If your interested in checking out other products from this company I strongly encourage you to check out their website at http://www.wildcarrotherbals.com .

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Be watching for our first results next week!

Thanks for walking with me today,

Mermaid’s Mommy

Salty sweetness for the soul

2015-05-17 16.24.22 If you placed a sweet and a salty treat in front of me 100% of the time I would go for the salty one. 100% of the time my Mermaid, like most 2 year olds, would go for the sweet. So today I decided to combine the two for a treat to benefit us both.

Sea salt has been used for many centuries for health benefits. Did you know when you add sea salt to warm water it opens your pores? It is known to aide in chronic inflammatory skin diseases by helping your skin maintain hydration. It may also decrease bloating and help muscle aches.

Ahhhh, the red rose, an international sign of love. Does it really add benefits in your bath? Of course it does! Aside from the pleasant aroma the natural oils in rose petals put off it can leave you feeling relaxed, sleep better and lower anxiety levels. I opted to pour boiling water on some cut petals and allowed them to soak several hours to reap the benefits of the sugars. Rose water acts as a mild astringent reducing inflammation in the skin and aiding in hydration.

We all know chocolate is delicious but it can also improve brain function, act as an antioxidant and increase blood flow to the skin. Add the sea salt which has other benefits when ingested, such as maintaining healthy levels of electrolytes in the body, and poof, a beneficial treat.

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My husband said it looked like we were going on a romantic date and I am just fine with that. Here’s why, when Mermaid walked into the bathroom she lit up and squeeled “flowers and chocolate Mama!”  if I create one special moment in my Mermaid’s day, its been a success. If that special moment is not only good for her soul but for her skin as well, its been a triumph.

2015-05-17 18.00.30 Whether your looking to find a soothing solution from your cupboards or prefer to purchase a product there are millions of options. Perhaps start by visiting another Oregon bloggers site at  https://harmonizenskin.wordpress.com/  and check out some of their products.

“Childhood is the world of miracle and wonder…as if creation rose, bathed in the light, out of the darkness, utterly new and fresh and astonishing. The end of childhood is when these things cease to astonish us.”

Thanks for walking with us this evening,

Sweet dreams,

Mermaid’s Mommy