Tag Archive | bullying

Good things come in small packages…

Nevus owners come in all shapes and sizes. The disease does not discriminate for race, religion or belief. Some cases are more severe than others but my experience thus far is that despite the subtype or severity, the owners and families of nevus owners alike, share the same levels of support for one another.

It gives me great pleasure to openly write about our journey and the journey of others on this platform to share not only our emotional struggles and human reaction to the disease; but to potentially offer knowledge to those seeking.

Today I am blessed to share a story about a little girl with ILVEN. Meet 9-year-old Rachael, a fan of literature – anything Bad Kitty by Nick Bruel is right up her alley. She has a healthy appetite and unlike myself,  has blessed her family with not being picky!

IMG_2026

Rachael was born with what her parents believed to be a suckling blister on the palm of her left hand and they thought it was adorable. However, by the time she was 6 months old it had spread halfway up her palm. The first dermatologist diagnosed Rachael with linear porokeratosis but he admitted he was way out of his league and sent them to a different dermatologist in Rochester,  NY.

A punch bioosy was done and Rachael was diagnosed with epidermal nevus.  The family was given a few prescriptions for creams but basically brushed off (ahhh… how I know the feeling).

At that time Rachael had growths on the bottoms of her feet that the same dermatologist insisted were warts. She attempted to freeze them off with liquid nitrogen but with no surprise to the family, failed.

Six months later they returned asking for more literature on Epidermal nevus but were given copies from a medical journal,  that I’m sure many of us can confirm,  means little to nothing without a medical degree.

Being that the family was military there same search and struggles for information continued with each  move to a different state and new Dr.

Rachael struggled crawling because her ILVEN had spread at a rapid rate and would snag on the carpet as well as place pressure on her lesions. They were so thankful when she started to walk and passed that point of despair.

In 2011 the family was transferred to Virginia Beach and yet again, had to establish care with a new physician.  At this point Mom, Lauren, was more Internet savvy and had determined on her own that what Rachael had was ILVEN. Mom printed everything she had found and presented to Portsmouth Naval Hospital with her findings.

Their new dermatologist was riveted by Rachel,  completely and utterly charmed by this blue-eyed blondie.  Unlike the past the Dr. Listened to everything Mom had to say and ordered a second biopsy.  The results? ILVEN. it was such a relief to have a diagnosis and course of treatment began to change.

After being diagnosed Mom felt the struggle and knew she needed support. Thats when she decided to start a Facebook support group, which is where I came to know this angel.

Rachael’s ILVEN continued to grow. In February 2015 she had her first surgery to remove the ILVEN from her hand, knee, toe, finger, wrist and bottom of her foot.

In July 2015 she had a second surgery to correct a keloid scar ;  an overgrowth of granulation tissue at the site of a skin injury, on her left hand. She had a pin placed in her hand/finger to keep it in place.

2015-07-23 06.39.13

Rachael is a fighter. She has never been ashamed or embarrassed of her ILVEN.  She explains it to people who ask or stare in her own child like innocence and even keeps a stock of band aids on hand for when her ILVEN cracks or bleeds.

Rachael,  you are an inspiration. I yearn to teach my Mermaid to go through life with your candidacy and courage in the face of adversity.

My very first post spoke about staying up at night searching for a family like mine, someone to understand, that was the birth place of Mommy’s Mermaid.  I later found the support group Lauren had created and will forever be grateful. We are 7 years behind their struggle but thanks to Lauren’s diligence and command,  we are making headway.

Our families share a bond unlike others. Lauren and I share that need to find a sense of belonging and teach others through our own experiences. We sincerely hope that through the ILVEN support group and Mommy’s Mermaid we can be a place for others to find companionship and strength.

Thanks for walking with us today,

Rachael,  Lauren, Mermaid

and

Mermaid’s Mommy

Car candy for breakfast…

I knew the day would come that someone, somewhere, would comment on my Mermaid’s nevus. I mentally prepared myself for how I was going to handle it and my plan was full of grace and couth. It’s my intention to show my Mermaid that other people’s reactions are just that, reactions. Things we aren’t familiar with spark people to stare, not always to be malicious but out of curiosity, and other times the unknown sparks fear. Having a level response to that will help build confidence and I need to be the foundation of that.

Well… the day had come, and my “plan” failed to say the least.

Mermaid and I were in the store bright and early on a weekday morning. I needed to pick something up for work and Mermaid was perusing the candy. A woman had been in the aisle with us for several minutes and looked directly at us multiple times and all was right. Mermaid was in a sundress which showed a lot of skin but unless you are looking for a problem or she lifts her arm, her Nevus is a well-kept secret at this point in time. Well what is a 2-year-old to do when the treat they want is higher than their little arms go… they reach for the sky right?!!?

As Mermaid’s arm went up, exposing her Nevus the SAME woman who had been standing next to us for several minutes with no problems at all, gasped, not a meek gasp, a LOUD, attention drawing gasp as if she hadn’t had air in days and projected “OH MY GOD” as she stared at my Mermaid.

Mermaid, being 2 and not understanding what the woman was reacting too, jumped – startled, and began to cry. I didn’t even think, I don’t remember there being more than several seconds between her gasp, Mermaid’s cry and my response but it wasnt nice. I must have turned a deep crimson and shot beams at her with my eyes as I watched her stare with slight disgust at Mermaid’s arm as I yelled “YOUR A DISGUSTING WENCH!”, grabbed Mermaid’s hand and basically drug her from the store. No treat, without what I came for, heart pumping, baby crying, obscenities flying the whole way out and knowing myself, I was probably stomping. There is no doubt in my mind I looked a certain level of crazy.

Sigh. Not my finest moment. I don’t even use the word wench so where that came from I can’t say. My preparation to handle that moment with grace and couth was a fleeting thought and I failed my first test. I was just down right mad.

I have now had a few days to think about everyone’s reactions in that moment. I don’t blame that Woman for being a bit shocked. The reality is, that until my child had it, I knew nothing about this disease and would be caught off guard myself if presented so closely with it. Did she need to gasp and yell to the extent of drawing attention and scaring my daughter, No. Then again, did I need to yell and draw attention? No. It seemed to be a chain reaction of good ole’ fight or flight responses. The Woman felt threatened by something unknown, Mermaid felt threatened by the unknown Woman, and I felt threatened by the response to the unknown. The perfect storm for a convenience store debacle at 6 am on a Wednesday morning. The cashier probably thought we were in a spat over a kit kat!

MjAxMi00NTk1MzlkNWY3MDgxOGI3

I feel like every situation, every appointment, every new bit of research I come across adds this whole new layer I need to understand. Bigger than that is getting the people who are NOT familiar with the disease to understand some of it too. At 2 years old my daughter isn’t hurt by a strangers stares or gasps, but her Mom is. To be reminded that what I have accepted as normalcy is seen as a flaw to others is hurtful. To be shown the response people may have to her disease when she is old enough to understand is hurtful. To know that it may continue to grow and thicken and be even more noticeable creating more opportunities for those encounters, is hurtful. If people were better educated on the disease perhaps it wouldn’t be such a scary moment when they were faced with it.

I would like to say that if presented with the same situation down the road, I would respond differently, more of a serene approach opposed to attack mode, but it hardly seems fair to make a promise I don’t know I can keep. I can say this though, I am not proud that my response was somewhat aggressive and to that Woman, I apologize. I also apologize that after leaving I imagined myself attacking you like a wild animal and settling the score right then and there, but I AM proud that in a matter of seconds I felt the need to protect my Mermaid without any hesitation. I’m sure Mermaid would also like to thank you for the fact that as a result of being drug from the store she got to eat the random candy from my car for breakfast. (Mom of the year award right here).

  With it now out of my system I am moving forward with our journey and hoping my next response is a bit more tactful! Live and learn right!

“If you use tact you can say anything, then make it funny.”

-Dane Cook

Thanks for walking with us today,

Mermaid’s Mommy

The Why?

2015-06-28 17.42.13

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.

2015-06-28 17.41.19

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

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?

 

turkey

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