Archive | June 2015

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

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Bump in the road

Well, we should be posting our results from our next trial but have literally had a bump in the road. Mermaid came down with something – possibly hand, foot and mouth disease or chickenpox. Mama is going with chickenpox as the other diagnosis doesn’t make sense. Either way we have been treating a body covered in itchy bumps opposed to her nevi this past week. She has been home from school and may be going a bit stir crazy! Her new kitten is helping cure that a bit. We will re-visit our trials when she is all clear!

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Thanks for walking with us today,

Mermaid’s Mommy

What Facebook Means to Special Needs Families

I could not relate more to this than I already do. To be honest I have learned more about Mermaid’s disease through our support groups than her Dermatologist.  So Dido… Thank you Mark Zuckerburg for creating our space and Tales from the plastic crib for recognizing it!.

 

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Tales From the Plastic Crib

Facebook is ubiquitous these days; every website, article, operating system and mobile device has a way to share directly to it. It’s become so popular with the adult masses that today’s teenagers find it lame (which makes me feel ancient and lame, myself).

These days it’s mostly a telephone and email replacement for extended family updates. Aunt Judy up in Michigan can see how sweet Bobby and Sally are doing without leaving the comfort of her couch.

It’s a dumping ground for Instagrammed pictures of people’s kids, dinner, and anything else they happen to take a picture of that day. It’s confused itself into thinking it’s Twitter, and added the ability to use hashtags. It’s where people feel comfortable airing their political and religious beliefs and end up getting into comment arguments with that guy from high school they barely remember, but accepted his friend request anyway.

Yeah, Facebook is…

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Dermatologist recommended

Next up on our menu of trials was Amlactin Ultra Hydrating Body Cream. We have used Amlactin in the past when Mermaid was first diagnosed, but not this specific line. We were given this product by Mermaid’s dermatologist who strongly supported it.

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Below is the information provided by the product’s website.

  • The #1 moisturizer brand recommended by dermatologists for rough, dry skin1
  • Restores lost moisture and softens severely dry skin—apply twice daily for best results
  • Works to exfoliate dead skin cells—returns dry skin to its natural, healthy state and improves overall appearance
  • With rich humectants and creamy emollients—delivers the kind of smooth skin texture you’ll love
  • AmLactin Ultra Hydrating Body Cream is specifically formulated for severely, persistently dry skin areas needing extra attention. With our patented ULTRAPLEX formula, this clinically proven cream gently exfoliates and intensely hydrates for long-lasting moisture and serious relief.
  • AmLactin Ultra Hydrating Body Cream provides triple action alpha-hydroxy therapy. Simply put, alpha-hydroxy therapy combined with rich humectants and creamy emollients creates a cream for dry skin that not only repairs but also softens.

5/28/15:

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Throughout our trial I noticed no change in either appearance or physical irritation. In fact, during this time the thickness of the nevus on Mermaid’s hand increased. No corolation to the product, simple coincidence, and once again, she declined to let me photograph it. However, there was also an increase in dryness beneathe her arm and slight thickening.

6/11/15:

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It’s note worthy that the Oregon weather has been warmer than usual so it’s more difficult to hydrate at this time. If Mermaid had it her way she would be living in the pool day and night. That being said we probably wont choose to add this product to our bag of wonders because it was applied multiple times a day, difficult to remember at times and didn’t seem to mesh with Mermaid’s skin type, but that doesnt mean it wont work for you! We are all different so your skin may take to it very well.

I am REALLY excited about our next product we are going to try.

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Another local Oregon business so generously sent us this to give a whirl on our journey. Thank you Wild Carrot Herbals!

DON’T FORGET… I want to hear what you have tried, are trying or stepped away from.

Stay tuned!

Thanks for walking with us today,

Mermaid’s Mommy