Tag Archive | Hope

A new shell…

Feb18

This is my life book. It has been by my side for almost 6 years now. It is always near me. I carry it in my bag and it’s rare the two of us are far apart. When I get to work, I take it out of my bag and set it next to my computer.

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It’s tattered, torn and hanging by a thread, but you know what – it’s full of so much love. Inside this book are my ideas. Those pop in your head, don’t want to lose them ideas. It has over 5 years of finances carefully listed and checked off month after month. It has party invites, my step son’s 8th grade graduation program, Mermaid’s official pathology report from September 2015, a picture of a friend I just lost, stuck through the back pages is a guardian angel pin gifted to me. Some of the pages are burnt as I was writing in it one night by the fire when I was pregnant and a hot ash caught it on fire. It holds a card my husband made me, a goodbye note from a Physician & friend I highly respected that moved away, a list of all the places I want to visit and a recipe my Mom hand wrote.

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Just last week the entire cover started tearing off and I taped it up with scotch tape. One would think I could just go buy a new one but it holds sentimental value. As I was taping it up I thought to myself, this is kind of like my life right now. Barely held together, full of so much love, but in need of a new shell.

You see, these past few weeks have been more trying than I can even begin to explain. Mermaid had what I thought was nevus starting to grow on her face, the moment it started to bleed I finally took her to urgent care, with no answers we were led back to dermatology and thank the Lord, it just ended up being eczema but we are now battling that. I have had some challenges at work and been faced with making very difficult decisions, I have had to allow myself to be vulnerable, fight anxiety and search within for what was the right thing to do. A few days ago I woke up overcome with grief. I sat down in the shower and sobbed, missing my friend who passed a few months ago. Her passing is still fresh and has completely altered my life. I barely made it to work and while there, I wished I cold just get in my car and drive to heaven to have a cup of coffee with her. That being completely unrealistic, I contemplated driving anywhere, just going, clear my head, but I didn’t. I stayed, I held up my responsibilities and tried to power through.

Mid-week I told myself to shake it off. I have so many blessings and hard times will come and go. Find a new shell.

That morning when I got to work, there was a package from a friend. It contained a Mermaid journal, a coffee card and a letter with 9 reasons why she sent it to me. So once again, I sat there crying. This time, happy tears. She spoke to work, my Mermaid and the loss of my friend, but #9 was my favorite. “Just because!”

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She didn’t know about my life book until I told her that morning, she just knew I was struggling to find peace.

She gave me my new shell.

When  I told her how much it meant, she kindly said “See, people are listening.”

It’s easy to forget our blessings, to dwell and struggle to find our footing; and that’s ok because somewhere along the way, something small will remind you. Give you a breathe of fresh air and a chance to start new.

I put some of my hard decisions in motion, I started yet another nightly routine for Mermaid’s skin and I talked to my friend driving home that day. Ok, so I talked to myself, but I know she heard me. I told her to help me find a way to let go, not forget, just let the grief go.

Yesterday Mermaid was suppose to be cleaning her room but instead she made me a bracelet. She was so proud of herself and asked me to wear it to work. When we got home today she found it on the table and said “Mommy, you forgot to wear your bracelet to work” – ashamed, I apologized. A few minutes later she came out of her room with a different bracelet and said it’s ok, you can wear this one, it’s your favorite. This was not my favorite bracelet, it’s not even mine, it’s hers. She can’t possibly remember where it came from and why she said that, or chose it, I can’t explain; but I remember where it came from. A few year’s back, my friend that passed, gave it to her while we were visiting in Seattle. Maybe it was her small way of reminding me of the good times, telling me it’s ok and that she heard me.

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This weekend as I transfer my life book to it’s new shell I will embrace the new beginning and here are 9 reasons why:

1.Because I have an amazing family that supports my every move.

2.Because I know deep down inside, the hardest decisions are often the right decisions.

3.Because as of now, Mermaid has no complications as a result of her disease & we can jump any other hurdles thrown our way.

4.Because I have 18 amazing years of memories with my late friend to smile about, not cry about.

5.Because when we think nobody is listening, they are.

6.Because today, I felt the sunshine on my face for the first time in a while and it reminded me that the clouds always clear.

7.Because the positives I gain through work outweigh all the negatives.

8.Because I am slowly learning, 35 years into this life, that it’s ok to stumble as long as you get back up.

and

9. Just Because!

My Dear Kathy – I thank you for my new shell and your humorous but powerful words. I thank you for listening. I thank you for reminding me of the good. My promise to you is to listen to someone else, and when they least expect it, send them a new shell.

Today, you are an honorary Mermaid.

Thanks for walking with us today!

Mermaid’s Mommy

Opposites attract….

Apr27

I owe my readers an apology, this month has been… well… shitty.  I have had so much negative and sorrowful energy surrounding me that I have failed to keep up with Mommy’s Mermaid, failed to return messages via FB, text & email to people reaching out and failed to really be present in anything. I am far from a stranger to tragedy or heartbreak but these past few weeks consumed me. I allowed myself to be sucked into things that were and are completely out of my control. It’s ok, we all do it, I know this, but why right now, do I suddenly feel like a weight has been lifted off my shoulders. Perhaps I wallowed in self pity long enough that it got old, maybe I realized things would slowly turn around, or maybe… it took one tiny small event to shift the waters.

Friendships are formed in the oddest of places. I have formed one with a fellow nevus Mommy on the complete opposite side of the country. Opposites attract right! Over the past year or so we have talked late into the night about life, family, our kids, this disease we despise. Shared products, ideas, information from our dermatologists, happiness and our anger.

A few nights ago a conversation started and things were said that changed my outlook. This friend of mine told me about her recent frustrations and shared about their Dermatology  visit that day. Their Physician told her that everyday she writes down four things that make her day great, and today, she would be one of those four. She told me she should start doing the same and that today, I was one of her four. She shared with her physician how much our conversations meant to her.

It’s mind boggling to me that I could be of any help/support to anyone, let alone be one of the great things in their day when I was struggling to find just ONE great thing over the past few weeks…. and that’s where it changed. Yes, I have been sad, I have been a big hot mess, to be honest, I’m not sure how I even managed to appear normal the past few weeks, but somewhere admist my travels down the rabbit hole, I gave enough to make someone elses day great.

It reminded me that no matter what we are all going through, despite our own depiction of what we are, we are ALL effecting one another. Take that in for minute…

Pretty wild isnt it? The smallest of gestures or words can completely alter ones mindframe.

Funny thing is… every time we talk, she is one of my four great things in my day. There are few people that understand Mermaid’s disease, even if they think they do, they dont ask about it or truly understand the fears that coincide with it… and they shouldnt have too. That’s my job, our job, as Mom’s, to carry that worry, to work together to not only build the confidence in our children about their “beauty marks” but build the confidence in one another to be that source of strength.

This disease cannot be cured by lotions, diet changes, medications or heaven forbid; surgeries. It’s here, to stay. Some barely noticeable to the eye, others… plagued with what others consider “unsightly”. Until you live it, I’m not sure you will really truley understand the feelings behind a child asking you to make it stop, to – in Mermaid’s words “take me to the doctor so he can take my scales” to a sobbing little one from the itching and pain or that dreaded call of being told you or your child has in fact developed complications.

What we cannot fix, we can absolutely, undeniably make acceptable. We can make this disease always be number one on our list of great things that happened today, for without it, we would not have learned the level of compassion, strength and protection we all own.

We often forget that where we cannot always control the things that happen around us, we CAN control how we react and handle them. I for one, was quietly reminded of this. Mermaid’s disease is often a foot note in our journey, especially these past few weeks, but wherever our path is heading, I am happy to have you all on it.

To my fellow Nevus Mommy, my friend and my late night confidant, I thank you for sticking by me, for encouraging me, and for always being there to sort things out.

I challenge everyone reading this to write down four things that made your day great.

We have a lot of great nevus stuff coming up, making a home remedy, the discovery of a new medication and some great events to share so forgive me for our brief absence but stay tuned!

Thanks for walking with us today,

Mermaid’s Mommy

You were born to stand out!

Mar10

There was a time in my life I took a “break” from social media. I personally no longer saw the need to read about other people’s every move or share mine. I was in contact with and saw the people I wanted to or used other means, like e-mail, text, this weird thing known as a “phone call” and believe it or not, I was then – and am still today – a fan of snail mail. I get really excited when a friend or some of my family from the older generation sends us a surprise. I felt satisfied with my “social contact”. However, after Mermaid was born the need to show pictures and events quicker, with those we didn’t see on a regular basis, led my husband and I to rejoin the Facebook frenzy on a joint account. I realized when I returned not only how much I missed seeing what was happening in everyone’s lives but being able to share in their joy.

Further down the road, after Mermaid’s diagnosis, my enjoyment of being back on Facebook turned into a necessity. It’s the place I found our support groups and began building relationships with fellow Nevus owners. Since deciding to start Mommy’s Mermaid social media has served as the place I identify who’s stories to share and has guided my family in many situations where we felt confused or nervous.

In staying with my commitment to help bring awareness and understanding to this disease I am always fulfilled to see others taking the opportunity to do the same on many different platforms. It’s such a brave act to share your personal story of being “different” or ask for help in times of need from complete strangers who may or may not comprehend the place you are in. Openly talking about what makes Nevus owners unique and special also runs the risk of putting yourself in a very vulnerable place with the public. To nobody’s surprise, I’m sure, there are still negative reactions to the way a Nevus owner may look and a lack of compassion for the way they feel, both inside and out.

 I was beyond excited to recently see one of our fellow Nevus owner’s take a huge leap and get featured in their local newspaper. The Manser family from Townsville, Australia shared their story about their daughter named Hope through a feature article in the Townsville Bulletin.

My favorite line in the story is when Mom, Karyn said:

“Hope was born to stand out” 

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I could not agree more, to all you special nevus owners, you WERE born to stand out, and to show the world that being unique is ok.

Below is the link to their story and I hope you take a few minutes to not only read, but really absorb their message, their fears of their daughter being bullied and their decisions to approach life teaching her how to have the resilience and self-esteem to deal with said bullies.

http://www.townsvillebulletin.com.au/news/baby-girl-born-with-giant-birthmark/news-story/554ee934c9c40ae58069cc76f21ad72e

I applaud both the Manser family and the Townsville Bulletin for shedding a small light on this beautiful little girl.

Thanks for walking with us today,

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