Tag Archive | skin disease

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

Epidermo what???

As we continue to close the gap on our one year anniversary I share another gem from our first few months. If you have yet to read it, this is the article after we got the results from Mermaid’s biopsy, what a happy day this was. To have answers and be cleared of cancer was so joyous, enjoy!

https://mommysmermaid.com/2015/09/27/prognosis-happiness/

Thanks for walking with us today!

Mermaid’s Mommy

Dear Starbucks Mom

Dear Mom at Starbucks,

I thought long and hard about the comment you made to me a few mornings ago and I have to say, the longer I thought about it the more upsetting it became. I’m sure you will never see this but other people will, and if our two chance encounters serve as a small reminder to other Mom’s, then my purpose is served.

You said to me, while standing in line at Starbucks “Oh  I saw you at wippersnappers, you really shouldn’t have your computer there ignoring your kid.” (for those not familiar, it’s an indoor playground) I am never the best at witty quick comebacks but my response to you was “thank you for judging me” and I walked away. So why did that one small comment and 30 second interaction continue to plague me?

I guess to understand I should share a little about myself and that night.

I am a working Mom, 5 days a week I wake up before dawn and go to work where my job requires me to hear and learn some hard things about people who I can’t always share, it’s the nature of the work. I know that, and I am ok with it, but I carry it. I leave work, pick up kids, head directly home where I start chores and dinner; clean up animal messes, followed by figuring out lunches for the following day, school and work clothes, maybe build a tower or two, bath-time, skin regimen time, fight a 3-year-old about bedtime and hope for a small moment to relax uninterrupted before the whole cycle starts over, or someone throws up. My weekends are typically filled up with birthday parties, baby and bridal showers, sporting events, family obligations and home projects, all of which my children are a part of.

In the recent past my daughter was diagnosed with an incurable skin disease that came with a laundry list of potential complications, severe ones. At that time I was scared and sad and knew very little about what all of it meant. That’s when I started this blog. I thought maybe, just maybe a few family members would follow me and if I was lucky, I would connect with another family or two who were going through the same experience my family was. It was received better than I ever could have imagined and before I knew it I had a dedicated group of followers that looked forward to what was coming next. It serves as not only a positive outlet for myself, but a tool for others.

Now you can see that we are a busy family, a very blessed, but busy family. Finding moments to write don’t always come easy. I typically find myself in the garage late at night doing research and piecing together my next post. The garage is quiet and I can open the door to hear the night sounds.

That week we had actually been to the playground twice before where my undevoted attention was on all the children present. I like it because they have staff that go inside the structure and check on the kids, it’s small enough to sit in one place and see the whole thing and if your child exits. It feels safe. The night you saw me there, yes, I got a cup of coffee and broke out my laptop. The place was very busy and I did not see you, though I wish you would have voiced your concern at that time, opposed to later, in a snarky judgemental tone. I admit, I too can be snarky, ask my coworkers, friends and family. I can have a sharp tongue, but it’s typically around work issues or in a funny tone, not meant to be blatantly rude, and certainly not to strangers.

That night I was working on a piece I had made a promise to get up soon and the house was buzzing with energy. My toddler was having an especially emotional day and both my kids were delighted when I mentioned heading to the playground. I told them I would be writing a little bit. By now they fully understand that means I need a smidge of time in my own zone. My son is quite a bit older, perhaps the age soon that those places wont be cool, of a more than legal age to watch his little sister and was with her the entire time we were there.

You noticed I had my computer out but you didn’t seem to notice that every few minutes I got up, waved at the kids, checked to see if they needed water and even took a break to slip my shoes off and go down the slide 8,000 times.

99% of my time outside of work is spent with my children, even my blog is about one of my children, I spend countless hours educating myself on all forms of her disease in hopes to bring facts and hope to everyone effected by it. If taking my kids to a safe place where they can run and get out their energy opposed to being cooped up at home and I can have a few moments to get some work done – offends you, I apologize; but here is my reminder and ask of you…

Before making a brash judgement, if you see a Mom that doesn’t seem as attentive as you think she should be, maybe a little less put together or disheveled, ask yourself first, what their day may have been like. Maybe they spent the entire day tending to their family, being on call for Kleenex, food, entertainment, soothing, storytelling, rocking, refereeing and acting as a maid service; and that very moment you encounter them, is the first moment all day they turned on their computer, looked at their phone, looked at facebook. Perhaps that person had a bad day, received bad news, was trying to process something and incapable of being super Mom for a minute. She may have been up all night with a sick baby, or sick herself and struggling to keep focused. You, as a Mom, I’m sure have had these moments. As we all have.

In those times, if something seems off, ask if you can help, keep an extra eye out for her kids if your worried and remember a time that you too, may have been judged for something you did, that really was ok.

My daughters disease has taught me so much about people because it has placed me in a position to have acquaintances from around the world with whom I share stories about our lives and I see the daily struggles they endure. They make my complaints about being “busy” seem silly. It has made me more compassionate than I ever could have imagined.

Our jobs as Mom’s is not only to look after our cubs, but our pack. The other Mom’s. Our job is to empower one another, watch out for each others cubs and well-being. Be the example our children need us to be by showing one another kindness.

It’s so amazing to me as an adult and a Mother to see all my friends who are also Mom’s; in a different light than I use too. I am the Mom that strives to teach my children about hard work, Others to teach about health by living an active, clean eating life, the one who’s kids will always remember their Mom knitting their clothes, gloves, weird monster pants and hats, the Mom who raises and tends to the chickens; teaching their little man about our food sources. My Mom friend that saved children who couldn’t be with their birth parents and loves them just as they were her very own – showing them people are good, My strong-willed Mom friend who takes her girls to roller derby, showing them strength and all my beautiful cousins who spend their days home creating every pinterest pin possible with their kids, feeding their creativity. We are a group of hard-working, crafty, healthy, loving Mom’s who watch out for one another.

Despite all the Dr’s appointments, stuffy noses, loss of any form of privacy, vomit, fits and being so busy I can barely function some days, I wouldn’t ask for things to be any other way, because I am in my happy place with all this madness.

I never owed you an explanation of who I was, what my days are like, or why I chose to do what I did that night, but I gave it to you because I have made countless mistakes in my life, some pretty terrible, but learned from them and I am giving you the benefit of the doubt. . I am going to assume that you yourself had a rough night with your children, were headed to work after a sleepless night and just needed someone to put that anger on. It’s ok, I get it, but I promise you this, I will go to the playground again and open up my computer. On the miniscule chance you see this letter and encounter me in that same situation again, come over, say Hi – ask what I am working on. I will buy you a cup of coffee and you can tell me what kind of Mom you are, so I can be encouraged by you as well.

Sincerely,

Mermaid’s 99% of the time attentive, wouldn’t trade my busy crazy life for anyone elses in the world, Mommy.

 

 

 

 

 

 

 

What could it be?

It’s been a while since we have had any direct contact from a physician regarding Mermaid’s nevus so our updates regarding progress have been slim, but we have something exciting to share!

Last week I received a bit of a cryptic message from our contact @ Yale University. “Hello, I need to talk to you about the study, I am leaving for the day, can you call me tomorrow, early would be best.” Now immediately my mind goes to all the wrong places. They found something bad, I messed up a specimen, I didn’t sign something, maybe they want me to take their info off my website… how could this be, we submitted everything last summer. It has to be bad. It just has too. it was pure torture waiting the 17 hours I did before reaching someone.

I talked to my Mom the entire drive to work the following morning. She reminded me to be positive and we veered into other conversations taking my mind off the call I was going to place immediately entering my office. Which is EXACTLY what I did. I purposely arrived early – knowing they are 3 hours ahead of me, dropped my bags on the floor, located my yellow sticky with the phone number and dialed.

As Dr. Chaote’s doll of an assistant pilfered through her emails to find just what she was calling about, I patiently waited. Just having her on the phone was relief enough. The suspense was killing me.

Remember, the study was conducted on the East Coast, we are on the West Coast. Until Dr. Chaote was involved there was never even a mention of having a biopsy done. When we finally had it done the results were forwarded to him via paper form but the physical biopsy has been housed here with our healthcare entity.

The information was vague but here’s the low down. Something on the biopsy result “popped out” to the physicians. They decided that they wanted to physically obtain Mermaid’s specimen and run further tests on it. What exactly caught their attention is beyond me but his assistant told me that this is GOOD news. When they see something of interest it typically means they are closer to identifying something more specific, which means more specific treatment, or leads them to further research for us to be involved in.

My “assumption” and again I say ASSUMPTION; is that the rare subtype of Edpidermolyctic Hyperkeratosis may have sparked some interest. Where I know nothing for sure I will be waiting impatiently to see where this leads us!

Glad to still be connected with the Yale team!

Stay tuned for updates!

Thanks for walking with us today,

Mermaid’s Mommy

Scrub a dub dub…

A good body scrub can be spendy; and let’s face it – if your like me, you might treat yourself only to use the product once, forget you have it, and find it months later when it’s all dried up and useless. Sunday afternoon we were longing for a soothing bath time treatment and decided to make our own.

Here’s what we were working with: Some Lavender body oil, Epsom salt with lavender, Sea Salt and pure Coconut oil.

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  The health benefits of sea salt and coconut oil in the beauty department are endless, we have discussed some of these in past posts but always separately. We have yet to combine the two for a single treatment. Add in the Lavender oil and Epsom salt and it’s sure to be just the small little wonder we were looking for.

Let’s talk about some of the benefits of these 4 products.
  • Sea salt can help push all toxins out of your body, the skin becomes soft and healthy. It has been seen that regular sea salt baths can enhance the skin tone to a large extent. The magnesium present in the salt can prevent the retention of fluid from your skin keeping it supple, firm and youthful.
  • Sea salt is full of vital vitamins and minerals, which are required for providing proper nourishment to the skin cells. These nutrients can improve the cellular energy metabolism, keep the tissues hydrated, boost blood circulation throughout the skin surface and increase the strength of cell membranes.
  • The calcium content of sea salt can help in cleaning up clogged skin pores. If you have an acne-prone skin, go for the sea salt pore cleanser. It keeps your skin clean and clear by reducing the chances of skin infections.
  • You can also use sea salt as a natural exfoliator. The texture of this salt helps remove the upper layer of dead skin cells and reveal a fresh one underneath that.
  • Epsom salt is very beneficial for the skin. Application of this salt on moist skin gives it a soft and smooth appearance. It also acts exfoliates and removes all the dirt and dust accumulated on the skin making it fresh and young.
  • The anti-bacterial effects of coconut oil can aid in acne treatment. Actually, this skin oil comprises of high amounts of lauric acid and capric acid, which are antimicrobial agents that treat acne. Using coconut oil not only treats acne, but it prevents further outbreaks as well.
  • Coconut oil can benefit those with dry skin through acting like a skin moisturizer. A study explains that coconut oil is a highly effective moisturizer for flaky and dry skin.
  • Lavender oil benefits for the skin can be attributed to its antiseptic and antifungal properties. It is used to treat various skin disorders such as acne, wrinkles, psoriasis, and other inflammatory conditions. It is commonly used to speed up the healing process of wounds, cuts, burns, and sunburns because it improves the formation of scar tissues. Lavender oil is also added to chamomile to treat eczema.
We pilfered our cupboards for a jar and some craft supplies and went to work.
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Some scrubbing of the jar, a few artistic touches from Mermaid, a bit of a mess and….
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 VOILA!
Mermaid and I’s homemade body scrub.
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Happy relaxing!
Thanks for walking with us today,
Mermaid’s Mommy