First of all let me start by saying that it is classified as a syndrome, not a disease. Although it does fall under the definition of disease, it is much more complex and thus called a syndrome.I have adopted the term "disease" to try to signify the severity of it to onlookers and rudely inquisitive people.
Don't get me wrong, I welcome questions and would much rather explain it openly, but I do admit that my blood starts to boil when I hear whispers and comments behind my back as we pass strangers in the aisles of stores, "What's wrong with that baby?", "Oh my gosh! She got burned!","Look at that red baby!", and the most recent "What color are you?".
Once put to paper, so to speak, I guess they don't sound quite as bad as I interpret, but the tone in which they were uttered makes a vast difference.
Most of the time these comments are not made to my face and do not require an answer or explanation, and in previous years I was deeply upset by them and would hurry away trying to put as much distance as possible between us.
Lately I have confronted these ignorant exclamations and tried to explain that it was not caused by trauma, but genetics.
This is my answer:
"She was just born this way.
She has a rare genetic skin disease, and she will have it all her life.
There is no cure, only treatments.
It is not contagious, so you can't 'catch' it.
But she is still such a happy girl!"
Then I kiss her cheek.
And continue to answer their questions,
but now they are phrased delicately with concern and sympathy.
Part Two-The Diagnosis...coming soon.
3 comments:
I can completely relate - there's nothing like going out to buy a gallon of milk to only come home in a bad mood because of ignorant people. Most of the people I meet are just truly curious, and while I hate that people make a spectacle over what I barely notice anymore (the red skin), I'd rather answer the questions and get the word out about her syndrome (I also hate calling it a disease - sounds like something bad when it's not). We've come across some pretty ignorant and hurtful people, though, and those are the people I worry about most for when Julia's old enough to understand why people are stopping to talk to her. She's blissfully unaware at the moment, and I really have no bearing on when I should start to talk to her about why her skin looks different. On the one hand, I don't want her to *feel* like her skin is different, but on the other hand, I don't want her to be hit out of nowhere with understanding of what other people are talking about when they ask "why". Tough decision!
I like you're explanation. Sometimes if it's a kid who asks, I'll ask them why their skin is the color it is (e.g. white or brown) and they'll usually say they were born like that - which is a great lead-in to saying, "Well, Julia was born with her skin color, and you were born with hers. Everyone's skin is different."
I am from Malaysia and my English is not so good. I really feel that you have a some kind of power in your bones. You love your family. You love your daughter.
I was like:"Wow, this woman is so strong!"
EmmaLee will be very grateful for she has a good mum.
I see that you haven't posted in a long while, so I hope you check for comments once in a while. I just wanted to say that your girl is adorable - such a sweet, happy smile. You can tell by looking at her little face that she is well-loved and secure in that. She reminds me so much of my own daughter, who is now a mommy, herself, when she was that age. Much love to you and your little one.
Laura Adams
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