OK Seriously, I realize my daughter has white hair and light blue eyes that move around alot. Does everyone have to point that out though. Shane and I are getting EXTREMELY irritated because everytime we go out in public we will have at least a few people completely go crazy over Evie's hair and eyes. I don't mean to turn bitchy but come on people. We had one lady in a restaurant yesterday want to take Evie through the kitchen so the rest of the staff could see her. Then at my husband's work (he works at a hospital) in the cafe we had 2 ladies make such a huge production over Evie's hair that it actually attracted more people to come over and look. Evie is completely adorable so I get that but it almost seems like we are the walking freak show.It is absolutely ridiculous. It would be the same thing as someone coming up to a person who is very black and going "WOW, you are so black, hey everyone come over and look at this really black lady" You just don't do that crap. But for some reason people feel they can make all sorts of comments about how pale Evie is , how light her hair is. How blue violet her eyes are. Some people actually laugh and bring people over so they can see her. I'm about to go insane and go off on someone. It's also affecting Jaili. She told Shane and I that she felt invisible, that people don't see her anymore, that she doesn't feel beautiful and that people only see baby sister. Of course we had a HUGE conversation first about beauty and people's opinions. Then we talked alot about baby sister and how she will have to deal with this for the rest of her life.
So for all of you parents out there with children with albinism, how do you deal with it? What do you say to people? How do you not want to tell people off and then wack them?
Yes, my daughter's are unique and beautiful, both of them. I don't need everyone and their dog announcing it to the world though. I worry about the girls as they get older too. I need a come back to shut people down.
I was used to being stared at alittle with Jaili because she has purple bangs (as do I) but that staring was different. Positive. Our choice with her hair. All people would say was " HOW CUTE, purple streaks, just like mommy" With Evie it's not a choice and the comments and staring are out of curiosity, like a freak show. Evie is not a side show to be paraded around. She is a sweet, loving, spirited, bright, beautiful baby girl.
Yes, I'm new to this stuff, yes it's irritating the crap out of me and yes, I know I will get used to it eventually. But any advice to help us deal would be glorious. Anywho, had to vent.
Oh and I don't want to ignore the fact that she has albinism and is gorgeous. I just don't want to be the object of fascination for people...constantly! People need to remember to THINK before you act or say something.
The crazy thing is is that I don't really see what all the fascination is about. I don't see that she looks much different than anyone else. Maybe except her beauty just like her big sister. (Yep, I'm a mother who adores my girls).
Oh and we are going to the beach this weekend so I WILL get pictures!!!!!
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8 comments:
People can be so ignorant that is for sure! I think no matter what you do or what you say you will continue to have people who are just oblivious. I think that the more you get to know her personality and the more you deal with those stupid people, the more equipped you guys will become. Plus your positive outlook on life will help I'm sure. I do hope that someone has a really great comeback line for you guys though!!! :) Some people are just dumb & need to be put in their place!!! Both of your girls are gorgeous, you are one blessed mama!
Love your new header by the way...
#1 tell your older daughter sorry but even if that baby looked just like her she would steal the show just cause she is the baby. Welcome to being the big sister. #2 Where in the crap are my pictures! #3 Mattilyn is quite the star when we go out. I use to be the ambasader for albinism and China when we first got home but It got really really old so now When people say wow thats some blonde hair (which is every time we go out) Where she get that hair? I say stuff like her daddys family is norwegen. Her daddy had really blonde hair when he was little. Which is all true. Very rarely do I do the albinism spill unless its necessary like teachers or if someone happens to know about albinism and they ask which is rare. She had/has a issue whith liking to touch everybody and have them hold her and such so I tell her keep your hands to yourself so they will back off at that point. Really I dont have to be rude most of the time. I try to pretend I dont notice they are lookin (and smiling so not looking meanly). Most of the time they think she is cute not weird or freaky. I noticed its the little kids that look at her that way I at this pint look at them like they are the weirest things I've ever seen and that tends to make them stop cause I'm real god at it. When we first got home I thought everyone thought she was weird but now I think some of that was cause I thought she was weird so I assumed everyone else did. 99 percent (and yes i have kept charts to document the percentage I have giveN lol)just think she is so cute and they have a angelic look about them so I think people are drawn to them. Also since we are in Texas we have a bunch of lantinos and they love love love her. You have to remember how you react is shaping how she perceves herself Be careful not to over react in front of any of your daughters. We never want them to see themselves as freaky or weird cause they are not they are just beautiful and thats why people look at them. Also know she does not see people looking at her so unless yall make a big deal about it she wont know. If I think of some other stuff Ill write back. #4 Please just have fun with your little super star. Most people just are gonna love her and Im sorry your oldest is feeling left out but that just happens. She is gonna need some special attention. Like I would inform some people to come over and just pay attention to her and say how pretty she is and not really pay a lot of attention to the baby. When I had my second child I had people bring gift to my first born cause he was almost three. That way he was not so left out cause they dont understand.
I grew up knowing someone who had albinism. Funny thing is, as a kid I never knew it was something to even think about or that "it" had a name. It just so happened she had white hair, light skin and blue eyes. It was what made her unique. What I'm trying to say is, I think you will find that kids will react more favorably than adults do, if that helps.
She's beautiful and unique so she will garner more attention. I've known situations where a caucasion family adopted an african american baby and yes, they got a ton of attention as well. I think that after some time, people will be used to her and she won't be so new anymore, they'll stop making your life uncomfortable.
I don't know how you'll do it but I think you'll eventually learn how and when to draw the line and block people from. And sure, maybe you'll explode but (looking at the positive) you'll probably use that and other occassions to learn how to say the right thing to get people to understand.
I know I'm not being that helpful and I'm just randomly typing things. I've had a long day at work so I'm not communicating well. :) But it will get better, Angel. It will!
Also, I just had a thought. When my sister and I were younger (18 months apart), Mom made sure that if one of us got something, the other one did as well. Neither one of us got anything special that the other did not get. It really helped to teach us that one of us is not more important than the other.
I'm not saying one is getting more than the other, just some food for thought.
Dear God, the audacity of some people. The second someone went to grab someone to "spectate" your daughter, I would quickly quip, "Let's not forget she's a child, not entertainment." You don't know me by the way but I stalk you via your blog ;) I coach Sophia (Andrea Olson's daughter) in gymnastics.
We got this all the time when we brought Shae home 4 years ago. I was just like you - extremely tired of the sideshow just because of my daughter's snowy white hair. I learn that the evil eye goes a heck of a long way to keep those are in it just the the curiousity. Shae cannot see people staring at her and I can drop people with a look before they even get near her. You needed be polite to these people - just calmly tell them they are invading your privacy and that they need to move along. You need to react in a way that your daughter can learn from so she can use when she is old enough to go to school and off on her own for the day. Shae tells people God made her beautiful and that they are being rude if they persist. Good luck!!!
I'm so sorry you are having to deal with that Angel. It's shocking sometimes what people will say and do. Where has common sense and courtesy gone? Wish I had advice for you or a great comeback (hmm, I bet Tauni would have something :D ). I sure hope someone is able to give you some great advice! Can't wait to see more pics! Oh, and love your new blog layout!
Sorry to hear the (idiots) uniformed are getting under your skin. We TOTALLY know what you are going through. Our twin boys have albinism as well, and you would think they were rock stars the way people want to touch them. the comments don't bug me nearly so much as touching my child. I understand when little kids can't resist touching their hair, but grownups should know better than to touch someone elses child. If this hasn't happened to you yet, brace yourself. That and the comments that inevitably you will start hearing (like one woman who was cursing me out for doing a dye job to my kids hair "at that age...hummph!" ) At a certain point you go zen on it. I know my boys are going to attract a lot of attention so I have had to learn to not let it bug me. I have to see the humor in it so that my boys will get that life is good and people are inherently good too (even if some of them are a little whacky). What has helped me is coming up in my mind w/ different type of comments to use in different situations. Sometimes I shoot for humor, othertimes I try to throw a bit of information out there. Depends on the day, my mood and the level of idiocy of the commenter.
I am surprised however that you don't see what the fascination is all about. Every child I have met so far w/ albinism looks so striking to me. Some of them look like they have just dropped down from a cloud while others look like they are ready to take on the world (superhero style). Whatever it is they have some sort of glow that is beyond just their hair color. Of course when its your own child you just think they are stinkin cute but think nothing more of it than that.
You can't fight it, the looks of awe and amazement are going to be there, so the best you can do is get her to be comfortable w/ living in the limelight.
If you ever want to vent, feel free to contact me...we've been home a bit over a year and our boys are now 29mnths. so a lot of what you are going to go through we can relate to.
- Jennifer (mom to Zachary and Hunter)
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