Over the past few weeks I have grown weary. Mermaids Nevus has spread and thickened down her arm. For the first time EVER it cracked on her hand and began to bleed. My heart sank. Like all of us Nevus parents, we worry… will it be painful? Itchy? How much more will it grow? Will people now start saying stuff about it? Will she be able to tell me if it’s bothering her? What can I do to FIX it? Though deep down inside, I know I can’t “fix” it.
The timing seemed impeccable that just as all of this was running through my head, we had our dermatology check up. More than a check up, we were once again, meeting a new Physician. From day one of questioning my little one’s first initial “spot” at less than 24 hours old, this marked our seventh physician to now play a role in her care. Some passed it off as nothing, others perplexed, one with which – we will just say – we didn’t “click”… and now another to lay eyes and insight into our world. I am always nervous about their responses to me, how they will treat all of us, what they will advise, will they be knowledgeable?
Well, I can only say this… best appointment to date. He spoke to the given they all do when we meet someone new – no cure, little treatment, managing symptoms but then hit on the piece I have been dreading. I have been told by two separate physician’s now that the location of Mermaid’s Nevus on her hand will most likely result in surgery. The target was school age. The thought of taking the risk to put her under and the pain she would endure following the procedure is hard to swallow, though I fully understand the downfall of not having it done. With each patch that grows I feel our days are numbered. Going into this visit I was prepared to hear the dreaded words. To my surprise it was the complete opposite. I showed him before and after pictures of the wart-PEEL treatment we did and the spot now cracking and he seemed both intrigued by the product, which he had never heard of being used for this, and impressed by the results. He felt that she was still in a state of manageable care.
We talked briefly about abnormalities and he felt it would be a reasonable time to have her eyes re-checked. For those of you asking recently about the ocular abnormalities, he did confirm that cataracts could develop at any time, it is not something that would necessarily arise in the youngest of age.
He noted that her skin tone works nicely to hide a lot of her nevus which made me laugh, supported our use of the controversial wart-PEEL that contains a cancer agent and said I was doing a good job. It didn’t hurt that he also complimented my own knowledge but what I appreciated most, was that he said he trusted me. He said we do not need to return for 1-2 years unless I have a concern and to keep doing what we have been doing. At that time we will re-asses the need for surgery.
It was short, to the point and felt amazing to leave knowing that as a family, we are doing all the right things.
Moving forward we will schedule another eye appointment with the specialist and continue to search the world for helpful products, and of course… share the outcome with you! Speaking of… seems like it’s time for a new trial!
With the new growth and being in swimsuits, dresses and tank tops over the summer I have wondered about more kids seeing it or asking about it and how she handles that. Picking her up from school one day last week one of her teachers shared a cute little story with me about Mermaid loving bumblebees. I said ya, her Dad taught her they are nice and she pets them at home and we have made some products for her skin with beeswax. She has said to me many times that the nice bees make honey for her scales and it’s adorable to hear her make that connection. Her teacher said she noticed her Nevus and asked Bailey what happened, her response? “Oh those are my Mermaid Scales” and just moved on.
It brought me comfort knowing that even when brought to her attention by someone, she is not ashamed nor phased nor hesitant to answer about her uniqueness. It made me feel proud to hear of her confidence.
It doesn’t matter what your differences are, be them seen by the naked eye or something internal, it’s how we handle what we were dealt. It took me a long time to get here, to feel confident both in my own understanding of her disease and making sure she knows it’s ok. I didn’t get here alone though, whenever I feel like we have a success, I feel like I owe thanks to those who helped it come about. My dear friend Aindrea who is across the country not only introduced me to the treatment for her hand and walked me through it but has remained at my side through this entire journey since our first encounter with one another(one day we will get to have the biggest hug ever) and to all my family, who have never treated her differently and encouraged my path of finding more knowledge. Last weekend I saw my Mom kiss Mermaid’s scales on her hand, letting her know she see’s them, but loves them. Of course, lastly, to each one of you reading this, whether it’s because you love my Mermaid and enjoy hearing about her journey or find yourself looking for answers and support through our path to relate in your own nevus world, we know you are here and appreciate you. It’s the small things that get us to big places.
Here’s to hoping we have many more successful months ahead of us!
To being confident and finding acceptance, we thank you all!
Thanks for walking with us today,