Archive | December 2015

Staying afloat…

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As you may or may not know, the Pacific Northwest has been under a stream of storm systems causing flooding and power outages. I have been on a 2 day staycation and without power for the duration of it. Needless to say… I have been disconnected.

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Mermaid and I went for a short drive up our road to check out some of the damage. The power lines must have felt festive because they managed to wrap themselves through the trees like Christmas lights. We could hear generators running in the distance and saw neighbors along with PGE crews working diligently to cut and move downed trees.

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Outside of our drive; my dimly lit, slightly chilly home is my whole world. As Mermaid naps I sit writing in my trusty notebook by a lantern . (To be fair I am finally getting this typed up as I get a pedicure) It may sound far from ideal but being unplugged from the modern world got me thinking, my stress level is nearly non-existent. Without the constant stream of e-mails, texts, tablets and tv’s going; my focus has been on the simpler things in life.

Building castles, making shadow puppets, wrapping presents, reading, writing and reflecting. Part of that reflection has been pondering what initially caused all my anxieties around Mermaid’s disease? Yes, the initial diagnoses left me saddened but it wasnt until I started surfing the internet that I became so fixated on the potential negative effects of her disease that my fears were magnified. As I watch my seemingly happy healthy child live almost as normal a life as anyone else I think back to those first days. What if I accepted her diagnosis and left it at that, never looked anything up? Its funny, working in the medical field I am fully aware that turning to the internet for answers is one of the most detrimental things anyone can do, yet I did it.

So I wonder, had I been unplugged from our modern world at that time, would I have gone racing to the nearest book store or library looking for medical journals in search of cures and answers? Maybe, but maybe not. Maybe I would have accepted that first short visit as the end of our story and had the faith to blindly walk this path. I suppose we shall never know, and for that, I am thankful.

We live in a world where being uplugged is rare ,and for some, never happens at all. When my power returns I will be inundated with emails, fb alerts, picture texts and emails. This is a good thing, it means I am loved. Ok, maybe Amazon Prime doesn’t LOVE me, but they certainly want to make sure I don’t miss the next big deal!

I was built to find answers, I say I am thankful  for not being a part of the unplugged world because I am one of those  people constantly looking for logic and fixes. My need to have a direct answer to something has been both a negative, and positive in my life. In this case, I see it as a positive.

We all know this disease is somewhat manageable and the likelihood of one of those more severe complications is slim; but on the chance it occurs, I plan to be prepared and educated for what that might look like.

By means of the information super highway that provides me a road map of every potential route, through your stories and all our experiences I will continue to search for those answers and truly hope you continue to do that with us.

Until the power returns and my anxieties slowly creep back, I will enjoy the quiet. I will sit and listen to each raindrop hit the roof, each crackle of the fire and enjoy my Mermaid without distractions.

Where I may not be built to always be unplugged, I must say – I am enjoying it. I challenge both myself and all of you to unplug for a while and see where it takes you. Then rejoin the world and stop in to tell us what you did!

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Stay dry my friends…

Thanks for walking with us today,

Mermaid’s Mommy

Lost in translation…

I feel like we have been consumed by the holiday season, in a good way, but off the grid for a bit. I finally got to work and made some changes to our website.

We now have a page titled “Honorary Mermaid’s” that will house stories about other people’s journeys, afterall – were all in this together! A Mommy’s Mermaid follower and fellow support group member will be featured in January. Looking forward to finally meeting in person and hearing her story.

All other pages have new and updated info so swing in and catch up!

I wanted to share a quick update after our wartPEEL trial. Mermaids nevus is still flat and smooth a month later. She is so proud of it and often shows me how her “owie is gone” – though inside I expect it will return in time, I will take all the days we get without an elevated, painful, itchy nuisance stealing her focus.

Here is a picture of before and now…

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So stop in, see what’s new and we have more to come over the weekend.

Hoping this holiday season is greeting you all in good health and good spirits.

Thanks for walking with us today!

Mermaid’s Mommy