Tag Archive | Photography

A new shell…

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

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MollyMadison making smiles!

We have so many talented people in our lives; from top chefs and bakers, to woodworkers and tanners. One special friend is a master at crocheting, you know… that thing with yarn.

Crocheting came around in the 1800’s and has long had a place in history. In the 20’s you saw it being worn in the form of hats & dresses then in the 40’s it became part of the wartime effort, women making items for the troops. In the 50’s & 60’s the art exploded, patterns blew up and you could find items nearly everywhere, if you have never checked out some of the crocheted clothes from the 60’s, you really should do yourself the service and look it up! It seemed to fade off a bit, the world was changing fast and it was kind of left behind, but not for long….

Today you can find blogs, websites, patterns, pretty much anything your heart desires to see and know about the crocheting world right at your fingertips on the world wide web.

There seems to be this age-old argument of what’s easier or better? Crocheting or knitting? I personally have tried both, and I personally can NOT do either one. It’s not my strong suit. Which makes me thankful to have someone in our lives that holds this talent!

In true mermaid fashion we received a gift from our friend Molly in the form of a mermaid tail. From the minute my Mermaid laid eyes on it she was in love. She hugged it and wouldn’t let go! We had to make a deal that at bedtime it was to be put up until the morning. I awoke to not only a Mermaid in my bed, but a mermaid TAIL in my bed! When asked how it got there she told me “It got up and walked here!!!”

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She loves her tail, and I love that it was made by someone special. The other day Mermaid came up to me in the kitchen and said “Mama, I don’t want my scales to go away”, I said good, because they’re yours to keep! her response? “because the mermaid’s made a spell that gave them to me!” and I told her that was right.

Her wanting to keep them is a far cry from a few weeks ago when she told me they were disgusting, so I will embrace it. The gift means so much to us, to have people that embrace her story and help cheer her on in all the smallest of ways warms my heart.

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We thank you for our gift!

Molly is truly talented and I encourage you to take a look at her online shop. There will always be new things added!

https://www.etsy.com/shop/MollyMadisonHOC

Thanks for walking with us today,

Mermaid’s Mommy

From hiding to Hollywood!

Mermaid’s disease has introduced us to all forms of Nevus, where occasionally we shed tears over the stories and difficulties everyone faces, we also get to celebrate.

Meet Marika Nagy from Manchester, a fellow member of one our support groups who got her chance to tell her story.

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My favorite line…

“My birthmarks make me special. The world would be a very boring place if we all looked the same.”

With Marika’s blessing we share her story, she is such an inspiration to all of us!

Click below to read her story on the daily mail!

http://www.dailymail.co.uk/femail/article-3809507/Girl-coverered-birthmarks-bullied-looking-like-cow.html

Marika – we look forward to seeing you on the big screen!

Thanks for walking with us today!

Mermaid’s Mommy

Lean toward happy…

Those of you that know me personally, know that I am a huge baseball fan. Where my team’s season is about over with basically no shot in the series I will still be glued to what’s happening all October. I recently read an article rooting against the Cubs to take the World Series and before everyone in Chicago gets upset at me for agreeing, let me tell you why. You see, the Cubs haven’t won a world series since 1908. Yes, they deserve their moment in the limelight but if they win, we lose one of the last connections to old-time baseball. To me, the time of the greats. The time where players were heroes, before other sports dominated the world and baseball was the leader. If they win, what will they grumble about for the next 100 years? I love this writers perspective, but win or lose, I love the sport.

There is a special little boy named Dylan who also has a love of the sport and right now, he needs you to help him hit a home run this October. October 3rd Dylan will be going in for his 27th… yes, you read that right, TWENTY SEVENTH surgery.

Dylan was born with Giant Melanocytic Nevus. A rare condition found in 1% of infants. Additionally he has Neurocutaneous Melanocytosis (NCM) which means he has it in his brain and spine as well.

Dylan’s form of Nevus runs the risk of melanoma and to help prevent that he will yet again, be undergoing another surgery.

In the photo on the right, Dylan is holding a picture of his friend Christian wrapped in the Lord’s arms. Christian and Dylan became friends when Christian was only 6 months old. This week marks Christian’s 2 year Angelversary. Christian lost his battle with Melanoma that was present in his Nevus at 19 months of age. I speak frequently about the potential side effects and our fears, our family has also endured the loss of a friend to Melanoma but Dylan’s fight reminds us all too much of those painful realities.

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(Dylan and Christian a few short months before Christian’s passing)

Christian’s Mom shared with me that the two boys and families became fast friends, following Christian’s passing Dylan even stood in her wedding. His Mom wanted me to share with everyone reading this that even in his darkest times, Christian was always happy. A doctor on the palliative pain team at children’s hospital said he’d never seen a baby so good spirited. He said ” no matter what gets thrown Christian’s way, his natural inclination is to ‘lean toward happy’… its remarkable, really!” That stuck with Christians Mom and has been a huge piece of her grieving. When things get tough, she remembers Christian’s resiliency and leans toward happy.

We NEED a cure for Melanoma. No family should endure what either of these boys families have, whether it’s in the form of loss, or prevention.

I was talking with one of Dylan’s parents today and I felt silly for my worry surrounding Mermaid’s nevus. She gently reminded me that we are all on a different journey, and she is right. We all have struggles and concerns valid to our lives. Some bigger than others, but in no way, shape or form, does it make any of them less.

As I’m sure you can imagine, with surgery comes cost and time off of work for his family. He has an amazing family that has done everything they can, and will continue to do everything they can to ensure his wellbeing. Right now, it’s our turn to help ease their burden, just as they have done for Dylan his entire life.

Dylan’s family has put together a fundraiser where they are selling water bottles and shirts to raise money to help offset some of the cost following surgery. You can donate or order using the link below.

http://fnd.us/01ASMb

I know we can’t always give by way of money and sometimes the biggest gift is that of prayer. So as October rolls around, keep this little slugger in your thoughts, give the family some encouraging words and tell them Mommy’s Mermaid sent you!

You can read about the specifics or follow Dylan’s story on his own personal facebook page at:

https://www.facebook.com/DylansAmazingJourney

To follow Christian’s mom on her path of recovery and learn more about his short but meaningful journey you can go to:

https://www.facebook.com/ChristiansSpecialSpots/?fref=ts

To Dylan, you are stronger than most people I know, you will heal and once again amaze us all. I have no doubt that Christian will be by your side through your entire process. You will be back on the ball field before you know it, and think of it this way, while your home healing, you can enjoy the world series! You will be in our thoughts and prayers before, during and after your surgery.

Tanya, Kara and Nikki – your strength is far from unnoticed. To Tanya and Kara, I want to thank you for trusting me with you stories, emotions and lives. I think I will forever remember to “lean towards happy” when I am having a rough one.

“Our wounds are often the openings into the best and most beautiful part of us.”
David Richo

Thanks for walking with us today,

Mermaid’s Mommy

A threenager’s thoughts…

Most days our lives mimic other people’s with a toddler, trying of our patience, astonished by the next big accomplishment, mortified by the new sentence or phrase they picked up, tiring as we fight sleep, attitudes, messes and defiance, and quite possibly the most beautiful experience we will ever have. I find myself constantly in awe of what my little being is teaching me and often forget what life was like before she was here. I joke that I want quiet and moments of solace but when I get them, I feel partially empty. I have learned that the pure chaos she brings me, is just what I always wanted.

Then there are times when I am reminded that unlike other people’s lives with a toddler, our journey is slightly different. Where her disease in no way, shape or form prohibits her from anything in life, it occasionally rears its ugly head and forces us to face it dead on. Sometimes that’s in the form of an appointment or treatment, but tonight, it was in the form of words.

As we were finishing bath time I asked her to lift her arm so I could use our special soap on her scales and very matter of fact she said “My scales are disgusting.” First of all, disgusting? Big word for a little girl. Second of all, how, why, where would she have heard something like that? but lastly, ouch. That hurt Mommy to hear. I replied just as matter of fact by saying “No they’re not, your scales are beautiful.” To which she replied “Thank you Mommy, but they’re disgusting.”

I opted not to argue or acknowledge her second statement and just moved on. I told Daddy what she said and he frowned. It seems harmless but it’s so far from that. My two biggest fears are of course, cancer, be it in the form of a wilm’s tumor or melanoma and her being embarrassed or uncomfortable in her own skin. Were blessed that for the most part, her nevus is hidden beneath her clothes and the ones that aren’t are hard to spot with the naked eye unless you know it’s there or are looking, so to this point we have had very little interaction with the public making much of a fuss. So where did she get this idea? Yes, she is three and they come up with the craziest things, half the time she doesn’t even really know what she is saying, but she was so matter of fact about it.

I think back to our first days after being diagnosed and how plagued I was by the thought of this very scenario. That one day, I knew she would resent her disease. That one day I would be trying to reassure she was beautiful even with a few blemishes, but not at THREE. My hope is that by not engaging in it, telling her I love them and moving on it gets out of her head, that she sees I don’t fuss about it.

As her Mom it completely ruins me inside. There are so many other things life she will have to overcome, things she will have to give all her attention to overcome that I never want this to be one of them, though I know that is only wishful thinking. It’s hard enough as a woman to live up to what society thinks we “should be” that I fear the additional hurdles she will face as her nevus continues to spread. I suppose at some point it was bound to happen, I just wasn’t ready for that time to be now.

Her timing is odd considering right now, it looks the best it has in months. I think the cooler weather is limiting the irritation and amount of flare-ups we have had. She has complained maybe once recently that it was bothersome.

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So to all my parents out there, nevus or other skin conditions, what do you tell your little one’s when they say stuff like this? How do you address their remarks about themselves? I look forward to hearing your expert advice!

Thanks for walking with us tonight,

Mermaid’s Mommy

Mermaid’s Ashore!

To most people, Portlandia is just a quirky show poking at the oddities of Portland, Oregon. I have to admit, “put a bird on it” and “the dream of the 90’s is alive in Portland” are genius and crack me up every time I see them but most of it is beyond me. We live in a small town East of the city and trips there are rare.

Where I may not frequent Portland these days, being born and raised in this great state I am very aware of who “Portlandia” really is. In the midst of downtown in a rather modest location sits the second largest hammered copper statue in the United States, right behind the Statue of Liberty. At 34 feet 10 inches tall a woman holding a trident reaches down to the people below her. Portlandia was modeled after the city’s seal which also boasts a woman holding a trident.

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The trident is known to be the weapon of Poseidon, the God of the seas, and Neptune, the God of freshwater and the sea. As a city that was once known to be the number one place in the western hemisphere for “crimping” and “shanghaiing” amongst the sea captains and sailors, a city that’s known for it’s beautiful bridges spanning the river, a city that boasts the amazing dragon boat races, has a waterfront walkway that hosts festivals – bike riders – walkers – runners – fountains and those just gazing at it’s beauty and a city who’s access to the water make it an easy port for transportation of goods; once known as one of the most dangerous ports in the world; it seems only fitting that it has a protector in Portlandia watching over the city.

With so much action on the water it was only a matter of time before it hosted it’s own Mermaid parade.  On July 30th Una the Mermaid & the travelling Fanta-Sea Cove organized Portlandia’s first annual Mermaid Parade.

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Those familiar with us can only imagine the excitement in my household upon hearing this news, those new to us, let me explain.

My beautiful daughter was born with a rare genetic skin disease called Linear Epidermal Nevus. It’s complicated, it comes with a laundry list of potential complications including skeletal, ocular and nervous system abnormalities. Has the potential to cause both benign and malignant tumors, raises the risk of melanoma, and in our case, may potentially take over the entire left side of her body. At first we were devastated, plagued by the “what if’s” and lost due to the lack of information and medical knowledge surrounding her disease. Over time we found some support groups and started this blog to share our journey and connect with the world to both learn from them, and share what we know. It’s hard to explain to a child what’s slowly growing on their body, we joked that her “scales” were from her previous life as a fish. A friend said to us, can’t you find something better? Like a Mermaid? and it stuck. From that moment on she became Mommy’s Mermaid. As she has gotten older she has told strangers, doctors, friends and family about her Mermaid scales, she whole-heartedly believes that they were a gift from a Mermaid. She believes they are a special and wears them proudly.

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An opportunity to take her somewhere full of Mermaid’s, those magical creatures that shared their beauty with her, to walk amongst them and relate, could not be passed up. I had no idea what to expect, I thought it would be small, generic, cute but nothing to write home about. I could not have been more wrong. I know now, that I need to start preparing for next years event! Mermaid could barely contain herself as we got ready, Mama are we leaving yet? Mama, are we ready? Mama, can we pleeeeaaaaasssseee go now. As if she knew just how special it was going to be.

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We were blessed to have a friend and her little one in tow with us, with the girls in wagons we headed to the historical waterfront, the friendship circle to be exact. The friendship circle celebrates the sister city relationship between Portland and Sapporo, Japan. The Friendship Circle includes a pair of 20-foot stainless towers that generate electronic tones. I can only describe it as nothing shy of magical. Men, Women and children of all shapes, sizes, and ethnicity filled the gorgeous backdrop of Portland in full costume. There were people giving out gifts, bubbles, shells, dancers, birds, artists and even a man fishing for Mermaids with a cat on his line.

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We flipped down waterfront passed Saturday Market and the Brewfest. People lined the path taking pictures, videos and cheered. After the parade we took some time to enjoy the city and played in the fountains!

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We get caught up in the daily grind, I often forget to take moments to stop and truly let myself enjoy the beauty of imagination. Mermaid’s disease will be with us forever, there is no cure, very little relief for symptoms, and at this time – minimal research or trials to move in a forward direction. If allowing my 3 year-old to believe that she was gifted her scales by a Mermaid gives her even one small ounce of happiness in this journey, I will believe it too.

To the amazing group that made this dream a reality, to every single person that came to celebrate and to our honorary Mermaid’s Geneva and Charlee for walking this path with us, I thank you all. This parade meant so much to us. As magical as I saw it, I can only imagine what my little girls thoughts were.

There are no words to describe the beauty and creativity that was bestowed upon us that day but thanks to the talented Christelle Morgan who has graciously allowed me to share some of her work, you can enjoy some of the sites from our day. Enjoy!

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You can find more information about the wonderful Christelle and her work at:

cmphoto.smugmug.com

To learn more about Una the Mermaid you can visit her site at:
Thanks for walking with us today,
Mermaid’s Mommy

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.