Tag Archive | Love

Tides are changing…

A few weeks ago Mermaid was playing on the floor and her arm looked dirty, I asked her if she had been outside and what she had gotten into, as I got closer, I realized it wasn’t dirt at all, but Nevus. Then today, after bath time, I noticed even more changes and thickening. It seems as though overnight her Nevus has completely morphed.

I put together some comparisons and when I looked at our pictures from the first year, it amazed me that I was so upset, it seems so minor compared to now.

I have always hoped and prayed that Mermaid’s Nevus would not continue to spread, as I am sure all of us effected by Nevus have, but I knew deep down inside, that it would. I just didn’t expect it to happen so fast.

Mermaid now has a more prominent line from under her arm to her wrist, new growth on her hand, top & bottom (which is the one I fear will require surgery) and thickening on both her elbow and underarm.

Here are few of the changes…

New growth on arm:

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Elbow: 8 months apart

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Armpit: 8 months apart

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Armpit: Ages 1-3

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We have a dermatology appointment coming up and I will certainly be asking for more information about possible triggers that stimulate growth.

We have added some new pictures under the photos tab of both Mermaid’s Nevus and a friend’s. The progression is interesting to see.

Coming up this week we will have a story about a fellow member of our ILVEN support group so keep your eyes open.

Thanks for walking with us today,

Mermaid’s Mommy.

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From our family to your’s…

Happy Memorial Day!!!

May we all remember what today is truly about and give thanks.

“True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others at whatever cost.”

-Arthur Ashe

 

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Thanks for walking with us today,

Mermaid’s Mommy

 

Buzz buzz little bee…

After using a product called WartPEEL on Mermaid’s thicker patch of Nevus it proved to be raw and a bit painful. I had been sent some amazing products from a company called Wild Carrot Herbals and amongst them was a salve. I personally had never used one but thought it might be the trick, within 24 hours all the rawness, swelling and discomfort was gone. I was beyond tickled and started reading more about “salves”.

Mermaid has one particularly “itchy” spot on her back so I thought I would take a swing at making my own. I researched all the ingredients that potentially soothe dry or itchy skin, a few recipes and came up with my own concoction.

I’m blessed to have a lot of savvy people in my life so most of these ingredients were gifts from people’s own labor’s of love. I included:

  • Pure raw honey – (given a jar from the neighbors hives)
  • Organic Beeswax – (given a bar made by my parents from their swarm)
  • Shae butter – (given a pure bar from a local Oregon company)
  • Lavendar oil – (a gift from Mermaid’s Grandma)
  • Coconut oil
  • Baking soda

The process in harvesting beeswax is interesting and my Mom had some pretty great pictures – here are a few.

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We gathered our ingredients:

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Started prepping them, if you have ever tried “grating” beeswax, it’s not easy, Mermaid gave up on that part and let Mommy finish.

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Melted part of them together:

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Time consuming, I learned quickly that slow and steady is required. After it was all melted we removed it from the heat and slowly added our other ingredients.

We poured it into a few containers and waited for it to cool. I feared for a minute that it might not bind, it stayed liquid for better than an hour and we continued to mix it, but eventually, it became this nice smooth product.

Given the ingredients I expected it to be slightly oily, which it is but we put some on Mermaid’s arm and it absorbed quickly with less grease left behind than I assumed would be present.

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We added a little garnish and closed up our afternoon project.

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I suppose the real test will be to see how well it really works, I have high hopes!

We are going to ship a container to one of our “itchiest” Nevus babies on the other side of the country and let them be the true judge.

We have plenty of leftover ingredients so I feel a round two of a lotion coming on.

Round one of find a natural aide complete.

Thanks for walking with us today,

Mermaid’s Mommy

 

 

Happy Mother’s Day!

Mother’s Day, by definition, is a celebration honoring the Mother of the family, as well as motherhood, maternal bonds, and the influence of mothers in society. Over the year’s, like many other holidays, it has bloomed into a bit of a Hallmark holiday. Cards, flowers, a gift, perhaps a nice gesture… and done. I question if buying someone flowers and signing your name on a card really encompasses “honoring” what Mother’s really are. So this year (yes, we still made cards and will do a nice gesture) I want to capture a little about what makes Mom’s so special.

For me, I don’t think I ever really grasped how important or hard a job it is to be a Mom until I became one myself. Sure, my Mom always asked me if I had clean underwear on while we were driving to the Dr. (what would she have done if I said no?), she fed me ice cream when I had my tonsils out, carted me back and forth to girl scout meetings, softball, basketball, volleyball, took me prom dress shopping, bought me my favorite ice cream from the schwan’s man, and let’s just be honest here…. she still loved me through my terrible teens and early twenties when I thought I knew it all, yet managed to screw up everything.

My Mom also did some things I will never forgive her for, like letting my Dad drive us to my junior high concert in a yellow 70’s something Chrysler my Grandparents had given us, it was the size of a house, literally, you could fit 17 people in it comfortably and if my memory serves me right, we got pulled over in front of the gym for everyone to see.  She took me through the bank drive thru with curlers in my hair for all the ladies to gawk at and I’m pretty sure I had a mullet for a solid 2 years. She made me sit at the table with a plate of eggplant parmesan in front of me for at least 14 hours, what kid eats that? Really, what adult eats that? Gross. She made me pick up filberts, apples and plums from the yard for hours. Ever owned a filbert tree? Your lucky. It’s a really quick way to turn your children against you. When I was a teenager, my Mom & Dad rode their bicycles through town in spandex and helmets, even to the river where I was hanging out with friends jumping out of a tree into the water cheering me on. Talk about embarrassing. Worst ever, wore matching fanny packs with my Dad in PUBLIC, once, for an ENTIRE vacation in California.

So ya, My Mom did the great normal Mom stuff, the embarrassing, I will never forgive or forget stuff… but she did two other things and these are the things I want to recognize today, as we honor our Mom’s.

#1. My Mom created stuff and let me be free. She did and still does all those things that are a dying breed. She painted, did ceramics, quilted, canned, made jam, salsa, sewed my Halloween costumes, gardened, took us to the river and let us run free while she enjoyed the sunshine and a good book, let me float the creek with friends and walk on the country road back home with no parents, let me ride my bike all around town with friends for hours, play kickball in the middle of the road with the whole neighborhood, go on a road trip with the neighbors, travel to Canada with my aunt and uncle, sleep in tents in the yard, be bussed to a school 20 miles outside of town in the middle of nowhere with about 20 kids where we learned about the forest, hiked and got to play hockey in the gym with the Portland Winterhawks… she taught me how to be creative and make things and live outside the box. She stayed close, but let me wander.

I look around my house today and see things she has created, and things I have created. Had she not done those things, I probably wouldn’t have either. I truly believe my expression through writing stems from feeling a sense of freedom for so long. The world feels like a different place now and some of the things we were free to do as kids may not pan out but I am grateful that at that time in my life, my Mom recognized that it was ok to let me find my own adventures. I already see myself doing the same things with my own daughter. Teaching her to cook, taking her to the river for the entire day while she explores, creating lotions and scrubs for her skin, it all stems from my own Mom’s creativity. For that, I feel honored.

#2. I selfishly resented my Mom for this decision for a long time, but stay with me, it makes sense, I promise. Up until a certain age my Mom was always around. She was there when I got home from school, took me everywhere I needed to go and tucked me in at night.  She had gone to college when she was younger and graduated but didn’t find a good use with her degree, then came marriage and kids, for so long we were her world, and she was mine.

She made a decision when I was in grade school to go back to college to become an RN. Suddenly she was gone, or studying and wasn’t all mine anymore. After she finished and started her career she was gone nights, weekends, holidays… paying her dues as a new nurse, but all I knew, is that she wasn’t there as much. I don’t know that until this very moment that I have ever actually admitted that I was jaded about it for a while. When your young, you don’t always understand the reasons for adult decisions. I wasn’t able to see that as much as she needed her own identity, she did it for us, her family.

As an adult I now understand and respect that decision. I can’t imagine our lives had she not made that decision, but I didn’t always make it easy on her, I became a rotten and at times ungrateful teenager and for that, I am sorry. As I look back now, and from a “Mom” perspective, I can’t even begin to imagine how hard that was. To juggle family, home, work and school, it’s a tough feat. Something I certainly do not long to do. As a result of her decision she has done some of the things that make me admire her the most. Like working in hospice. A job where you are there to make people comfortable in their end days, you become attached to their families, to the patient, only to have to let go. A job I truly believe only an angel can do.  She worked her way through the ranks managing many different units and teams, worked in critical settings making life decisions and made career choices that ensured a better future for all of us.

I didn’t like college, more than a few times I changed my path, stopped going, wanted to quit… but I knew if she could do it with all those other factors in play, I could too. My Mom gave me the strength to finish, and for that, I am honored.

It’s important for me to recognize the things I did not always understand at the time because one day, I may be in the same boat with own daughter. On the flip side, it’s equally important for me to share what these things mean to me today. I am much better at putting things in writing than saying them in person so I dont give my Mom the credit she deserves on a daily basis but need her to know her worth.

Our Mom’s are so much of who we are, I only hope that when my Mom looks as me, it’s with the same pride and honor as I have when I look at her.

There is no truer statement than “it takes a village”, I had surrogate Mom’s that took me in as well, Aunts galore; Cindy, Leora, Pam, older cousins, My Mom’s best friend – my Aunt Miss, my Godmother Peggy my best friend’s Mom’s Tammy and Maryellen, they all fed me, kept me in line… called my real Mom when I was hanging out with boys I shouldn’t have been or throwing parties when my parents were gone, thanks for that by the way, but they too helped plant seeds of freedom, creativity and hard work. As I look back I feel so thankful for my village.

I now have my own daughter, and she too, has her own village. Where I try to instill all the wonderful things my village gave me, I am a working Mom, I love my job, I sometimes contemplate if I’m doing the right thing, that perhaps I should stay home with her, but the truth is, I am my best me when I have more than one responsibility. I was nearly 9 years into my career before she came so in a sense, it’s my baby too.

When I cannot be there she is in the hands of her teachers who have helped raise her since she was 4-months old. A group of Women who I trust whole heartedly to do right by my precious gift and encourage her free soul. She has Auntie Nay and Grandma who step in when needed. She has Mommy’s friends Jen and Molly who treat her as their own and she has this whole network of people here, from around the world, rooting her on in her uniqueness.

My favorite thing about being a Mom is watching the world through Mermaid’s eyes. With the exception of believing swiper fox will steal everything she owns, she is unscathed. Everything is amazing and exciting. The tiny villages of ants in our yard are a precious world to her. She thinks the bees live here to make honey just for her. There is no concept of time outside of light and dark and responsibilies are an after thought. She believes she is a ninja, a mermaid and a chef, so I believe she is too.

This Mother’s Day, opposed to just a card or a nice gesture, I challenge you to tell your village those things they did that make you proud, the things that make you feel honored to have them. The things that added value in making you who you are today.

To my Mom and my village, where I know I did not always make the best choices, I came out on the upside because of who you all have been for me. Mom, I am proud and honored by each and everything you have taught me, each and every decision you have made for me, be it easy or hard, and thankful that you were chosen to be mine.

Happy Mother’s Day to all my fellow Mommy’s.

Thanks for walking with us today,

Mermaid’s Mommy

 

Opposites attract….

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

Sun’s up…

It seems like only days ago it was near dark as I drove home from work. I’m use to it spending the majority of my life in the Pacific Northwest, and don’t get me wrong, I love it here, I have tried living other places only to miss my four distinguished seasons; but this year I seem to be ready sooner than most for longer days.

Nearly overnight we went from being stuck inside from 5:00 pm until the following day, to not even thinking about stepping foot inside until close to 8:00. The past few nights we have witnessed the signs of summer creeping in. The neighbors came out and we shared an evening walk/bike ride, dinner on the patio, lawns being mowed, flowers blooming, birds chirping… It’s as if new life has taken form on our sleepy country road.

Those that know me well; know one of my happy places is surrounded by our friends. Many of them I consider family. The first sight of sunshine and I was already planning a BBQ. Yes, I love our friends, but their presence is so much more than just company. These are the people who stood beside us as we said our vows, paced the lobby with my family when Mermaid was refusing to join us in the world, cried with us when we lost loved ones, supported me when I said I have this crazy idea to start sharing our life online, reached out and waited just as impatiently as we did for Mermaid’s diagnosis, get us through our days when we are away from our family and did all of this, plus countless more, not because they had too, bound by blood, but because they wanted too.

(Don’t worry those of you that couldn’t make it, we feel the same about you!)

We are blessed ten fold to be surrounded by people who despite our individual religious or political views, despite where we came from or where were headed, continue to make that choice in walking with us. I have spoke before about how important the people we walk through life are, they have helped shape who we are today and who we will become tomorrow. They are a solid. It’s important to me to show that solidarity to Mermaid, to show her that from the beginning she has had all this support. That despite her differences, she is now and always will be surrounded by a solid. If we can teach her now, the importance of building those meaningful, lasting relationships, she will build that for herself when we are no longer responsible for her surroundings.

I took a brief moment to stand in the kitchen, veered past the dried out yellow rose in my window sill, and watched life happen from a distance. I saw one of our Groomsmen catering to a 3 year old child he felt as his own, a couple well on their way to beginning life – attempting to have a child, a former co-worker turned best friend laughing a belly laugh I hadn’t seen in quite some time, my soul sister watching her new love with gazing eyes, Our responsible DD on duty waiting for her next call indulging in everyone’s antics, Newer friends sliding into the madness as if they had been there forever.. I paused, took it all in… and rejoined life.

I hope if for nothing else in this world for my Mermaid, that one day, she too, will look out her own window and see  how grand life can be. That for small moments in time we are all connected, all the same, despite how different we really are.

I started this post the night after our BBQ, above is as far as I made it, I had a better ending, I had a real connection to my point, but that fell short by one of the people I gazed out at…. tragically losing their life the following day. I have hesitated to post this, perhaps it would feel inappropriate in the wake of life’s events, drudge up hurt or sorrow, but I decided to finish. Afterall, our journey, be it Doctors appointments, public shame, questions, is what I signed up for. I took an oathe to myself and or readers to share our journey, so I will now try to conclude.

Many moons ago I met an amazing young woman, we went to college together. We started within a short time of eachother at the same company, in the same department, with the same doctors. Our professional connection means little. I honestly cant remember a time in my life where said person and I couldnt pick up the phone and hash out lifes issues, Through weddings and babies, SO many crazy nights, our “crew” moving away, making new lives, and finding ourselves, we were there.

I hadnt seen her happiness shine through the way it did that day in a long time. They were the couple starting a new life – attempting to have a child. Her better half lost his life in a tragic motorcycle accident the following day. For someone who feels pretty confident in their words, I don’t at this time. I wish I could say that things get easier with time, I can’t. I want to text, call, show up and think that my presence makes it better, but I know it doesn’t. I KNOW more than anyone could ever possibly imagine that an event of this magnitutde leaves you stranded.

Here is what I will remember, on a sunny day in April,  rare to the pacific northwest, I got to laugh and share about life with the person that made her so happy. We shared not only a Birthday month, but a work anniersary. That for a brief moment, I stood back and watched, I saw, I know, what happiness is.

I cannot give the happy ending I intended this post to have the way I would like too, but what I can do, is promise you, promise you all, anyone that takes the time to read this, that whether you know I feel it, or see it, your presence, big and small, gives me hope for better days. Your mere presence gives me the strength to continue writing about our journey and know, to really, really know, that Mermaid has the best most amazing foundation anyone could ask for.

Our random April get together was sporadic, it was fed by my own selfish need to feel the rays on my back and the love of our friends, and it will forever remain that.

I will share with Mermaid, later in life, the people that made me… well… me… and to everyone present, know that you too, will forever be a part of our solid.

Cheers to sunny Saturday’s.

Thanks for walking with us today,

Mermaid’s Mommy

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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

Are Mermaid’s real?

Only 5 days until our 1st Birthday and our week reminiscing about the past year together continues. Tonight we are going whimsical and sharing one of our all time favorite posts, A Fish Tale.

That was such a fun experience and definitely humbled us. Never saw it? Read it, but don’t remember? New to us? Take a peek!

https://mommysmermaid.com/2015/10/05/a-fish-tale/

To see more work by Kinna Clark go to:

http://www.geminiIImages.com

Thanks for walking with us today,

(and those of you in the PNW, enjoy that sunshine!)

Mermaid’s Mommy

Twinkle, Twinkle

In my kitchen window sits a dried out yellow rose. When I see it, I think of the song Twinkle, Twinkle.  When I think of Twinkle, Twinkle, I feel brave and scared and confused and happy all at once. So what power does this dried out yellow rose hold that it can make me feel so many different things?

When Mermaid was little she didn’t sleep well. We would have to rock her for hours upon hours. I use to pace the house singing Twinkle, Twinkle. I can recall so many nights in her room just swaying and singing, the window in her room sits at just the right spot to bring in a smidge of the moonlight that would glow as we sang. When she had her biopsy I held her down and sang Twinkle, Twinkle. She still occasionally asks for it, only now, she can sing it with me, and it’s the sweetest thing you’ve ever heard.

An old friend of mine is currently in jail after being accused of a pretty horrific crime. The details are not important at this point in time, maybe another day down the road when the trial is complete she will choose to tell her story, until then, the details hold no weight in my purpose of this connection. She has a school-age daughter and through our entire friendship I always respected what a good Mother she was. She was so fun, full of life and always talking about her little angel. In recent years she had another child and despite our distance, I can only imagine she was an equally amazing Mother to them as well.

When I originally saw the newscast of her being arrested I was in shock, I went to our old group of friends looking for their reactions and almost felt numb. She was released for a short time in which I got to touch base with her but then she was re-arrested and has been incarcerated ever since. The person I knew, in no way, shape or form, had the ability to commit this crime. People all around me were telling me that “people break” they ” do things we would never expect”, one person told me she wouldn’t be there “If they didn’t have the evidence to prove it.” Yet I have still NEVER been convinced. Her first hearing was coming up and I asked multiple people to join me, I needed to see her face to face. I felt like it would give me a better feeling of what happened. In the end nobody came and I went alone. I don’t know what I was hoping for, I knew it was just a hearing with basic information, I expected it to last 10 minutes, I assumed there would be others on the docket, a room full of people where I would have simply blended in and I would have arranged my whole morning off to leave just as confused.

As I entered the court room I stalled. The entire thing was empty. Just then a lawyer walked in and asked me if I was there for that specific case, I said yes, and he assured me I was in the right place, then he left the room. 15 minutes until start time, nobody there. 10 minutes until start time, nobody there. I text a mutual friend explaining how odd the whole experience was, 5 minutes until start time… I hear someone behind a closed door state that she has arrived. I got butterflies, my palms were sweating, Why was I the ONLY person in this room? There she was, walked in by an officer, placed in a chair in shackles, just her, an officer and I. She had no idea I was coming, how could she, we had not had any contact since the night she was arrested for a second time. She looked beautiful, as usual. How she managed to pull off looking like she had make-up on is beside me, but she did. She whispered to me “Thank you for coming” asked about my Mermaid and told me she loved me.

As her lawyer entered the room and we were now passed starting time they spoke so quietly to one another I couldn’t hear what was happening. I then saw her lawyer pull out 2 round white buttons, a button I recognized. It was the voice box for a build-a-bear. She had two of them. In a silent court room, much like Mermaid’s room all those nights I walked and swayed singing Twinkle, Twinkle – she began to sing into them. One “You are my sunshine” and the other… you guessed it, “Twinkle, Twinkle.” I cant even begin to tell you the level emotion that took over. I sat there crying, watching this fellow Mother, friend, human being, sing her children lullabies into voice boxes so they wouldn’t forget her.

Court began. She was confident, brave and it was over. Until the real deal a few months away that is. As it ended her family showed up. They had been misinformed of the time and missed the entire thing. They arrived with enough time to sit down and be asked to leave. The lawyers finished up a few conversations and I waited in the hallway with the family. They shared positive information with me and her Mom asked that I stick around a few minutes for a picture outside.

Outside of the courthouse we were all given a yellow rose. We took a picture holding it and her Mom intended to send it to her to show her our support. I thanked her Mom, hugged her, and left.

When I made it to my car to leave I couldn’t go directly to work, I was on the verge of losing it, I was holding in so much. Instead, I drove to a nearby park on the river, put my car in park, the rose on my dash, and sobbed. So many lives have been effected by this terrible tragedy, two children are without their Mother, while my friend’s Mother watches her own babies life unfold, helpless, just clinging to hope. The echoes of her voice singing into the voice boxes ran through my head over and over. I cried until I had nothing left. I fixed myself up, and left. Nobody at work would know what my morning had been like. None of the patients would even begin to guess the despair I was feeling only an hour ago. The people I returned emails too would think it was a normal day, but it wasn’t.

I believe everything happens for a reason. We may not know the reasoning behind my friend’s story just yet, but I believe I was meant to be in that room, alone, with my friend, while she sang to her babies. I believe I was meant to have those few small moments to see and know that the person I knew, was still the person I knew. Call it what you will, I felt in that moment, as she sang so peacefully that my soul knew she would one day walk free.

That night I held Mermaid a little tighter, and sang her Twinkle,Twinkle.

The rose sits in my kitchen in the same vase I placed it in that day so long ago. It is dried perfectly and reminds me daily of someone else’s struggles.

Mermaid’s disease is harder on me than it is on her at this point in our lives. Our journey right now is about learning to cope with what life has given us. Throughout our path I have felt sad, anxious and nervous. Some of that I have overcome, some of that, I haven’t, but much like my friend, I have no idea what our future holds at this point in time. What I do know, is that something inside me, something strong, tells me that we are all going to be just fine. I think about my friend’s little girl pushing that bears hand and it singing to her, offering her comfort, just as it does for my Mermaid when I sing it to her. Our struggles, be them big, or small, lead us to find little rays of sunshine, small glimmers of hope that give us peace in merky waters. I believe Mermaid and I are on the path we were destined to be on, that she was given her disease to rise above and prove that being unique makes you shine.

Twinkle: shine with a gleam that varies repeatedly between bright and faint.

To my friend, may you ever see this, and all our fellow nevus owners, continue to twinkle.

Thanks for walking with us today,

Mermaid’s Mommy.