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.
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,
Thank you for the read. Let me know if there is a better place to leave a comment. For now… My little man doesn’t know and most people don’t notice. Even people who have known him since he was born (it’s on his face).. don’t notice. When they do it’s “what happened to his face?” Which so far isn’t too terrible, but by three, I think he’ll hear those words and realize something is different.
Thank you for reading! We love and appreciate all our followers! I will be here to help support you and your little man if you ever face the trials of “whats wrong with me”, we are learning how to navigate it now. We wish him all the luck! Your a strong Mama!
Maria please be hapoy that ur little marmaid is healty and this is only a skin problem.
Hi Marian – it’s not “only a skin problem” – there is a laundry list of potential abnormalities that come with her disease and she is far from in the clear from them. I appreciate all my readers and the support and I am definitely grateful that thus far we have only dealt with a small amount of irritation and bleeding as a result but it’s damaging to ones self esteem, and I can not even begin to express how scary it is that any one of the potential abnormalities can present at any time. It has caused very serious problems in other carriers whom I have personally spoken too, including seizures and skin cancer that not everyone has healed from. Yes – I thank our lucky stars it is mild at this moment but please understand we spend a lot of time with physicians keeping it at bay and caring for it on a regular basis to maintain a healthy level.
I know how it feels , my 1 yr old has it too and very extensive. We are very scared and we allso hope to be only his skin.
Well then we shall both be thankful that it is just their skin so far 🙂 In our thoughts!