Tag Archive | Thanks

Small gestures make big things happen!

Over the past few weeks I have grown weary. Mermaids Nevus has spread and thickened  down her arm. For the first time EVER it cracked on her hand and began to bleed. My heart sank.  Like all of us Nevus parents, we worry… will it be painful? Itchy? How much more will it grow? Will people now start saying stuff about it? Will she be able to tell me if it’s bothering her? What can I do to FIX it? Though deep down inside, I know I can’t “fix” it.

The timing seemed impeccable that just as all of this was running through my head, we had our dermatology check up. More than a check up, we were once again, meeting a new Physician. From day one of questioning my little one’s first initial “spot” at less than 24 hours old, this marked our seventh physician to now play a role in her care. Some passed it off as nothing, others perplexed, one with which – we will just say – we didn’t “click”… and now another to lay eyes and insight into our world. I am always nervous about their responses to me, how they will treat all of us, what they will advise, will they be knowledgeable?

Well, I can only say this… best appointment to date. He spoke to the given they all do when we meet someone new – no cure, little treatment, managing symptoms but then hit on the piece I have been dreading. I have been told by two separate physician’s now that the location of Mermaid’s Nevus on her hand will most likely result in surgery. The target was school age. The thought of taking the risk to put her under and the pain she would endure following the procedure is hard to swallow, though I fully understand the downfall of not having it done. With each patch that grows I feel our days are numbered. Going into this visit I was prepared to hear the dreaded words. To my surprise it was the complete opposite. I showed him before and after pictures of the wart-PEEL treatment we did and the spot now cracking and he seemed both intrigued by the product, which he had never heard of being used for this, and impressed by the results. He felt that she was still in a state of manageable care.

We talked briefly about abnormalities and he felt it would be a reasonable time to have her eyes re-checked. For those of you asking recently about the ocular abnormalities, he did confirm that cataracts could develop at any time, it is not something that would necessarily arise in the youngest of age.

He noted that her skin tone works nicely to hide a lot of her nevus which made me laugh, supported our use of the controversial wart-PEEL that contains a cancer agent and said I was doing a good job. It didn’t hurt that he also complimented my own knowledge but what I appreciated most, was that he said he trusted me. He said we do not need to return for 1-2 years unless I have a concern and to keep doing what we have been doing. At that time we will re-asses the need for surgery.

It was short, to the point and felt amazing to leave knowing that as a family, we are doing all the right things.

Moving forward we will schedule another eye appointment with the specialist and continue to search the world for helpful products, and of course… share the outcome with you! Speaking of… seems like it’s time for a new trial!

With the new growth and being in swimsuits, dresses and tank tops over the summer I have wondered about more kids seeing it or asking about it and how she handles that. Picking her up from school one day last week one of her teachers shared a cute little story with me about Mermaid loving bumblebees. I said ya, her Dad taught her they are nice and she pets them at home and we have made some products for her skin with beeswax. She has said to me many times that the nice bees make honey for her scales and it’s adorable to hear her make that connection. Her teacher said she noticed her Nevus and asked Bailey what happened, her response? “Oh those are my Mermaid Scales” and just moved on.

It brought me comfort knowing that even when brought to her attention by someone, she is not ashamed nor phased  nor hesitant to answer about her uniqueness. It made me feel proud to hear of her confidence.

It doesn’t matter what your differences are, be them seen by the naked eye or something internal, it’s how we handle what we were dealt. It took me a long time to get here, to feel confident both in my own understanding of her disease and making sure she knows it’s ok. I didn’t get here alone though, whenever I feel like we have a success, I feel like I owe thanks to those who helped it come about. My dear friend Aindrea who is across the country not only introduced me to the treatment for her hand and walked me through it but has remained at my side through this entire journey since our first encounter with one another(one day we will get to have the biggest hug ever) and to all my family, who have never treated her differently and encouraged my path of finding more knowledge. Last weekend I saw my Mom kiss Mermaid’s scales on her hand,  letting her know she see’s them, but loves them. Of course, lastly, to each one of you reading this, whether it’s because you love my Mermaid and enjoy hearing about her journey or find yourself looking for answers and support through our path to relate in your own nevus world, we know you are here and appreciate you.  It’s the small things that get us to big places.

Here’s to hoping we have many more successful months ahead of us!

To being confident and finding acceptance, we thank you all!

Thanks for walking with us today,

Mommy’s Mermaid

Happy Birthday Mommy’s Mermaid!

Today officially marks ONE YEAR of Mommy’s Mermaid. I want to start by thanking each and every one of you that are reading this now, and anyone that has ever stopped in to see what we are up too. Without you, we would not still be here.

I had this idea for a while before starting it and one night decided just to jump in head first. I knew absolutely nothing about the blogging world. I had no idea how to start, how to get eyes on my writing or how to share our journey. I am still learning but have found a few avenues to help gain publicity and for that, I am ever so grateful.

I knew if it was going to flop I would know fairly quickly. I remember my first month having nearly 500 people stop in to visit and I was floored. I decided to set a personal goal of roughly 10,000 visitors by our Birthday. If I hit that number, or anything even close to it,  I would know my time and energy would somehow be validated. Well, guess what? We hit it!

The past year has taught me so much. I think of a quote by C.S. Lewis…

“Isn’t it funny how day by day nothing changes, but when you look back everything is different.”

It’s so true, I felt nothing change but as I look back over the past year it’s all so different. Mommy’s Mermaid re-sparked my desire to write. It went from an idea on the chalkboard in my kitchen to a part of our family. As long as I can remember I loved to write. As a school age child I wrote a Children’s book, in Junior High I started writing poetry, High School I did a lot of free writing, had a small gig with a local newspaper and journaling; and as a young adult I had this burning desire to tackle a book. Life happened, I went through a lot personally as a young adult. I experienced a massive amount of death, had some pretty terrible things happen to me which I will choose not to delve into and I did not deal well with any of it, I spiraled a bit and spent years not caring about much of anything. To put it bluntly, I was a hot mess. I needed that though, I needed to stumble to show myself I could prevail. It might not make sense to you but I am the type of person that loves with everything I have. I might not say it on a daily basis or shout it from the rooftop but I feel it. Everything I experienced left me broken and empty. I spent a few years repairing myself and some of the damage I had caused and more recently learned to let go of some of that grief. I found my passion again through Mommy’s Mermaid.

This past year as led me to some pretty amazing acquaintances and friendships. I look forward to the day so may of us get to meet in person. Multiple local businesses have sent me products and encouraged me to continue our journey and Mermaid herself has become aware of her “scales” and her “computer self” and loves to help Mommy create and try new “special soaps” or products.

My original plan was to write about what we knew, Linear Epidermal Nevus, but over time I realized that there are so many different forms of nevus that many of us would never know existed without the internet to connect us all. There are so many things we can do together to help change the face of this disease. Number one, awareness. The psychological effects from owning a nevus alone can be devastating. For those challenged with syndromes and physical complications it can be life altering and life threatening. We have an opportunity to raise money for those families needing to pay for medical expenses, time off work and trials. We can help support research to hopefully one day, find a cure, be it for those who develop cancer or simply for cosmetic purposes to decrease mental health issues. Over this past year I have realized that Mermaid’s disease is next to nothing in comparison to others, but the existence of it is what started this all.

I have learned that simply writing about the “facts” – what the diseases are, the potential complications, testing involved etc. is not so captivating. To those with the disease it’s helpful but those without need a different connection to help understand where we are coming from. Writing about our daily experiences with others, sharing stories of other nevus owners and putting bits in about our personal life gains the most interest. So much of this disease is navigating the day to day changes, one day can be unbearable while another you can completely forget it exists. Where you may not focus on the physical challenges daily, we monitor the emotional challenges non-stop. Being able to connect with our readers on a multitude of levels is imperative, even if that leaves us vulnerable at times. Again, I thank you for your interest in our story.

Over the past year we have learned about and gone through the biopsy process, vision concerns, eye testing, participated in research, met fellow nevus owners in person, shared trials and experimented with some heavy products, shared other peoples stories, raised some money for a few families and opened up our lives very publically. Through all of that, my favorite moments are still the random messages thanking us for speaking so openly, people reaching out with their stories and those just wanting to talk. Being the parent of a Nevus owner sometimes leaves us feeling helpless so the fact that ANYONE would choose me to reach out to just to talk is humbling.

I have a pretty drastic idea for a big change coming to Mommy’s Mermaid over the next couple of months and if I choose to take the plunge I hope you all come with me, until then, I will continue plugging away and bringing you as interesting of material as my brain can conjure up; and who knows, maybe this will be the year I finish a book!

We are eternally grateful for all your support.

Thanks for walking with us today,

Mermaid’s Mommy

2015 in review

It’s crazy to think that I started this project as an outlet for myself, a place to journal and maybe, just MAYBE be a place for one or two other people to land while feeling lost; as I was.

In 9 short months people stopped by 6,500 times to see what we were up too. Thank you all for your interest and support. You will never know how much it means to us and we hope to double that in 2016!

HAPPY NEW YEAR!

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 6,500 times in 2015. If it were a NYC subway train, it would take about 5 trips to carry that many people.

Click here to see the complete report.

Holiday closure…

This morning my husband woke me to tell me that the ground was covered in snow, he knows I love that sight. It made the morning peaceful and magical. As Mermaid and I listened to Frank Sinatra on the way to school with flakes falling; I glanced back at her in my rear view mirror gazing at the snow-covered trees and thought to myself, Happiness.

I spent the past few weeks writing down all the moments in my day that made me go Ahhhhh…. those times something really struck me as a moment of gratitude. My list is big to say the least; coffee, warm showers, my readers, my Husbands strength, parents that live close, co-workers that thank me when they don’t need too and so on. It’s certainly proof in itself that I truly am blessed, but towards the middle of the list it says “CLOSURE”, I remember the day I wrote this and I think looking back on my year, closure is absolutely the thing I am most grateful for throughout this chapter in my life.

I speak very little about the struggles I have faced both physically and emotionally over the past 4 years. It hasn’t been all bad, don’t get me wrong, there have been amazing times as well, but a little more difficult to navigate. To save you from a novel I will share the lowlights of this time. I use to work for an extraordinary Physician named Dr. Andrew Lum. Someone I considered more of a Father figure than a co-worker. He taught me skills beyond my ordinary reach, compassion and life lessons I use to this day. He had this infectious laugh and he and I often got carried away in our jokes and joy. Work didn’t feel like work with him, he changed my view of medicine and what it means to help people. Andy fell ill in the fall and was off for a short while as they attempted to find a cause. On Dec 5th 2011 I received a message from him that he would be returning to work that following week. That was the last normal conversation I ever held with Andy; and the beginning of many difficult changes for myself.

Shortly after that message Andy was placed into a medically induced coma, he had complications from a disease called myoendocarditis. Multiple clots, aneurysms, brain surgeries. He never returned. I visited Andy in the hospital, care facilities and then I stopped. As far as I was concerned the man I knew no longer existed, he couldn’t walk, talk, eat, laugh, he was lost; and it only brought me pain and anger to see what he had become.

During this time I was blessed with the gift of my baby girl, despite being told it may never happen. Unfortunately that blessing came with an extremely difficult pregnancy, for those present they can understand just how challenging it really was – and no – I don’t just mean the part about me being an asshole. Though I feel absolutely no regret for throwing away your lunches. I had a tough delivery which resulted in an emergency C-section and despite being over the moon about our new edition to the family, I was struggling to heal and felt ill constantly.

Upon my return from maternity leave I switched positions within my company in hopes to leave some of my sadness surrounding Andy behind and better my hours for our little one; but right after doing so is when Mermaid was diagnosed with LEN. I struggled to come to terms with her condition, an incurable disease just did not sit well with me,  and was still fighting a physical illness. I remember my first year in my new position, I sat behind my office door and cried three out of five days a week. I cried about Mermaid, I cried about being sick and in pain. I cried about being somewhere new and not knowing people the way I did at my past clinic, I just cried.

At the beginning of this year I had a hysterectomy. I handled it well, I knew it had to happen and understood its importance for my health. I was strong about it. Until about 2 weeks later. I remember sitting on the edge of my bed and out of nowhere, I lost it. I sobbed. I was completely overwhelmed with grief. I knew I had no other choice in that situation and maybe that’s what it was, the not being in control of my own body and happenings, I wasn’t pining for more children but having that right to decide taken from you… hurts. My Husband held me for a few minutes and told me he understood and I knew he did. I stood up, brushed myself off and never looked back.

Over the next few months I started to heal physically and emotionally. I found my roots in my new office and the idea of this, of Mommy’s Mermaid, started to take shape. Re-directing my negative energy to something positive allowed me to move past the shadows I had been living in for several years and find my happy motivated self again, but something was still lingering.

About a week ago I got see Andy. The progression he had made was nothing short of a miracle in my eyes. He recognized me, we talked, he walked, he laughed – oh did he laugh. We hugged and hugged again, his amazing wife Dale joined in on the hugs and told me all the wonderful things happening in their lives.  It dawned on me while visiting that I had turned away when Andy became lost, but he was now found again. Perhaps it was because I was just as lost at that time and had nothing left to give. Despite the reasons, we sat there together again, both with our recent new findings of strength and I walked away with a full and happy heart. That day, below Eddie Vedder, I wrote down “CLOSURE.”

Had I not traveled the road I did the past few years I don’t know how genuine my feeling of “happiness” would have been this morning as I glanced back at Mermaid, but it was. The fight to overcome and come out the other side makes victory sweet.

I now have closure on Andy and I’s rocky journey and know he is happy. I have closure on my families journey to expand and can look to the future with my health, and I have closure to my fear of Mermaid’s disease because I have all of you to walk through it with me.

It’s that time of year where we look back at what we are thankful for and yes, I am thankful for my friends, my family, my home and my job, but this year – I am most thankful for closure. As this chapter closes and another one opens I thank my family and friends for sticking through it all with me, but most of all, I thank my best friend, my husband. For he stood strong as I crumbled and continuously picked me up, He watched my health deteriorate, my happiness disintegrate and yet still, believed in me. He loved me through it all, To you I say: “Il n’y a qu’un bonheur dans la vie, c’est d’aimer et d’être aimé.” – There is only one happiness in life, to love and be loved.

“There’s a trick to the ‘graceful exit.’ It begins with the vision to recognize when a job, a life stage, or a relationship is over — and let it go. It means leaving what’s over without denying its validity or its past importance to our lives. It involves a sense of future, a belief that every exit line is an entry, that we are moving up, rather than out.” ― Ellen Goodman

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I asked friends and family to share with me what they are thankful for this year in words or a picture and how joyous it was to hear them share…

“The love of good man, a roof over my head, my family’s health, my adorable nephew and my niece that’s due the day after Thanksgiving, a job I enjoy, the best friend’s a girl could ask for…”

“I’m thankful for peace on earth where there is peace, thankful for coworkers and friends I CAN TRUST, thankful for my daily LITTLE struggles as they keep me going, keeping me thankful and my mind open:)”

“I’m thankful I still have a friend like you in my life. “ (and I for you my little cajun partner)

“Working in health care, particularly Oncology and the kind of illness I see people with day-to-day I am thankful for mine and my family’s health this year.”

My personal favorite…

“Many chances… not just the second but the third, fourth and tenth as well – and possibly more.”

My how we should all be thankful for chances.

And the pictures? Love them… Can you tell were from the Northwest?

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I challenge you all to think about what you are REALLY thankful this year.

Looking forward to a year full of joy and adventures!

Hoping this week’s Holiday greets you all with good health and good spirits!

Thanks for walking with us today,

Mermaid’s Mommy