My immediate reaction was to comment on that photo to try and educate the commenters and trolls. Incredibly unsuccessful. As I commented with what the diagnosis was and added a FIRST link, I noticed it was useless because at least 30 new comments were coming in at the same time. Many people were commenting that it was baby Brenna and referred people to her site. Fortunately, I knew it wasn't Brenna since I had seen this picture when Evan was born. I fell asleep aggravated as the comments accumulated over 10,000 and the likes were reaching 500,000. There was obviously too many people wrapped up in this viral photo and impossible to educate them when thousands of comments were being posted as the minutes passed.
I woke up early Saturday morning eager to try and educate others about HI, especially the ignorant trolls. I decided to make a picture collage of Evan with information on what the condition was and where to go if people really wanted to help. This is what I came up with. (Please excuse my errors. I was fired up and didn't check spelling)
click to enlarge
The top picture is of Evan at 9 days old and the bottom at 2 1/2 years. There are some mixed feelings with people I know about 'putting Evan's photo out there for all to see'. The top photo is already on my blog as well as a few others, with my permission. And as much as it is a photo that maybe frightening or hard to look at, it's the truth and is what Evan looked like when he was born. There is no sugar coating it, it is what it is. I know that there are evil and ignorant people out there but the way I look at it is that education should be honest. And that is what this picture represents. No, I have no control what the creeps and trolls do but if I don't educate others then misconceptions will continue.
My boy is beautiful. He is an amazingly happy little man and always has a smile on his face. He will grow up knowing that he is perfect just the way he is.
The pictures that are put up online by support groups, foundations and couragous parents are not for people who are too blind to care and just look for the next kick, out to shock and seeking attention. They are for parents, relatives care takers and caring people who look for information, understanding and support. And we are in desperate need of it. FIRST has withdrawn the picture of the lovely baby with scales on its face and visible ectropion, so thanks to this person there is now a little less information out there for people who need it.
ReplyDeleteI cannot understand this. When people tell me how hard it is to look at a newborn with HI, EB and open wounds or anything else that impacts its appearance, think how hard it must be to be in this body, to breath through the pain, holding on to life with such unbelievable strength. It immendiatly changes your attitude from something self-centered to really looking at that baby and seeing beyond. It could have happened to each of us, being born with a condition like that, it can happen to each of us to give birth to a baby affected in this way or any other way. Our children are not objects of presentation to look and gawk at and mock and comment, they are little people that deserve the utmost respect.
Agreed! I just checked FIRST's page and the picture is still there but they attached their logo/website to it. So luckily for those who deserve and need the accurate information about Ichthyosis it is still available.
DeleteI love your blog DeDe and I love that little boy! You are both amazing.
ReplyDeleteOK, your family is just the cutest and most wonderful I've encountered in a long, long while. I have learned so much on your blog. You have really outlined what living with HI is like on a day-to-day basis. As a mom of special needs kids, I know how important GOOD information is, so kudos to you for learning FAST and doing what it takes! I am totally in love with Evan! His smile is contagious, his spirit indomitable, and I think he's got a bright future!
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