Archive | April 2015

The difference in you and I

Apr22

 

 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

Running for Dylan

Apr9

   Dylan is a special little guy effected by Giant Congenital Melanocytic Nevus in need of some support, please follow the link below to learn more about his journey and how you can help.

http://www.gofundme.com/running-for-Dylan

 

Thanks for looking!

Mermaid’s Mommy

From sea to land – a tale of scales

Apr4

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Below is the first post I ever wrote, I choose to keep it up as a reminder of where this all started. I now love to share other people’s stories and learn about all forms of nevus. By no means am I an expert but have come a long way in understanding what our future holds. When I start to question if I should continue this blog I come back to this post and remember the place I was in at the very beginning. Welcome, and if your new… start here!

Hello there, however you got here, I’m glad you made it. Welcome to Mommy’s Mermaid, let me tell you a little about our journey.

In 2013 our family was blessed with a beautiful baby girl. From birth I noticed this odd spot on her arm, multiple Dr’s assured me it was nothing, just a tiny birthmark and home from the hospital we went. As she grew, so did this tiny birthmark. Eventually filling her left armpit, around her ribcage and down her arm onto her hand. Now it didnt resemble a birthmark at all, more so a fungal infection. Multiple creams and a perplexed primary care Dr. Later we landed in dermatology.

I will never forget how calmly I was told that what my daughter had was called a nevus and it had no cure. A type of birthmark that could potentially take over the left side of her body and to be conscious of something called a wilms tumor. Keep it moist, avoid harsh soaps, see you later. I was so fixated on the fact that it would be there forever that I didnt ask the questions I should have.

We left and went for lunch, I got out my paperwork and googled the diagnosis shown of “melanocytic nevus” and a wilms tumor.  If your not familiar with either, as I was not, take my word for it, what begins to pop up is a parents worst nightmare. Cancer, cancer, cancer. I felt sick, confused, sad. Why was it taken so lightly? Whats going to happen now? I immediately emailed the Dr. Who said a modifier didnt populate and what she had was not melanocytic but a linear epidermal nevus. Better but still not good.

I cried a lot in the following days. Sometimes with my family, sometimes alone. I thought about what the kids would say in school, would she wear a swimsuit when she was older, what about her prom dress? Would she develop kidney cancer, how would I know? Will she be tough enough to handle the vain criticisms I knew lay ahead?  My anxiety’s plagued me. I searched night and day for anyone like me. Another Mom who felt sad or scared, a positive story about someone in adulthood with this disease and time and time again I came up empty handed.

I researched and did my due diligence on the disease and made a decision right then to start raising my daughter not to be ashamed of her “birthmark.” I jokingly said they were special scales she got to keep from when she lived in the ocean as a fish. Hey, she does love water! A friend said can’t you at least make it something better than a fish? Like a mermaid? and it stuck. Her special scales from when she was a mermaid. Mommy’s Mermaid.

I wanted to create a place for people to come for support. A place we can talk about products that have or have not helped, challenges and successes.  A place where we can help eachother understand more about the disease and feel safe. A place where families like mine can find eachother just as I needed so badly in the beginning and am sure I will need again throughout our long journey. I pray for those who’s nevus has resulted in surgery and or cancer or left them feeling alone or insecure. Please know, you have a friend in us.

I hope in time to gain followers, strength and knowledge as I publicly share our walk down this road.

Your Truly,

Mermaids Mommy