I have updated the link in the sidebar, “How Lyra Sees” with the new longer version of the presentation.
Dr. Brian Evan’s updated presentation includes more than double the number of slides as the previous one. This has always been very helpful to share with friends and family members to explain to them how albinism affects Lyra’s vision.
I finally purchased some of the shampoo I had heard about to deal with Lyra’s “dingy“ hair. It’s called Shimmer Lights, and you can buy it from a beauty supply store, Sally Beauty Supply in my case. On the back of the bottle, it says the product “Brightens white and gray hair, Shampoos away yellow, and Tones down brassiness.”
It really did work quite well on Lyra’s hair. Her hair looks a lot brighter and whiter and clean and shiny. It’s pollution free, at least for now.
One thing you definitely need to do the first time you use it, is dilute it a little. As you can see in the picture below, this shampoo comes out of the bottle in very DARK purple color. If you’re not careful, your child could end up with purple hair. I had to rinse Lyra’s hair multiple times to get all the purple out. For now, I am just going to use it on her hair once a week. We’ll see if that works to maintain things.
I just want to take a moment to say Thank You, to everyone who has ever left comments for me, either on my Guestbook or after individual posts. I can’t tell you how very very much I appreciate the those comments. Your comments have all been incredibly encouraging. It really motivates me to know that this site I created is serving the purpose for which it was intended…to help other parents.
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One of the first things any new parent of a child with albinism learns, is that taking good photos of his/her child can be an unbelievable challenge. Why? Because of the red-eye effect caused by the camera flash. I was able to find a really great explanation for what causes that red-eye effect on the blog Photocritic.
After reading that and understanding why it happens, it’s easy to see why it’s even worse if the person has reduced pigment in their eyes. It’s not like the typical red eye you see in photos of people without albinism, which can be corrected with a red eye reduction program. Because of the lack of pigment in the eyes, the flash causes a much brighter and bolder red or hot pink color, not just in the pupil, but in the entire eye. (more…)
These are the kinds of things that Daddies teach their babies… You can never have too many videos of Lyra. : ) This is her showing off her new trick; and then later, just plain showing off. Here are the lyrics to the song she is attempting to sing. It is our special version of ‘Row, Row, Row Your Boat’ that we learned from Lyra’s teacher, Miss Kim.
Row row row your boat
Gently to the shore
If you see a lion
Don’t forget to roar…ROARRR!Row row row your boat
Gently down the stream
If you see an alligator
Don’t forget to scream…AHHHH!
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Lyra’s hair has started looking rather dingy. I can think of no other word to describe it. YES, I do wash my child’s hair. I just don’t think the baby shampoo is going to cut it anymore. Her hair just has this slight yellowish/grayish tint to it lately. I know it’s not her hair gaining pigment, because its hair all over her head, not just hair closest to the roots. In fact the dingiest looking part of her hair is the hair in the middle and on the ends. It’s kinda gross. 
I’m going to have to research this a little more, but I vaguely remember reading something on the NOAH forum about hair absorbing pollution. Yucky! I hate to use some hardcore clarifying shampoo on her hair, because even though she’s got white polluted hair…she still has soft baby fine hair and I don’t want to damage it or dry it out. Hopefully I can find a shampoo that is both powerful yet gentle. Then we’ll just have to go make ourselves a shampoo commercial. 
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Although I haven’t been that vocal about it on this site, albinism awareness is something that is extremely important to me. One topic in particular that I have very strong opinions about is how albinism is portrayed on TV shows and in movies. I will educate everyone I know or ever meet in the hopes of making life a little easier for Lyra and other children with albinism.
Some people argue that the treatment of albinism in movies and on tv is no different than any other condition or disability. That’s not true. There are some movies out there that inaccurately portray other conditions/disabilities, but for every inaccurate portrayal, you can find a movie with an ACCURATE portrayal of that same condition/disability. That’s not the case with albinism. With the exception of the movie The Albino Code, written and directed by NOAH member Dennis Hurley, there are no movies out there that present an accurate portrayal of a person with albinism. This has been the largest contributing factor to society’s overall lack of understanding of albinism and false perception of “albinos.” The characters with albinism people have seen in movies have ALL been negative; evil, scary, freakish, mentally challenged…the list goes on. Can you IMAGINE if someone tried to make a movie about an evil character with autism…or a freaky mutant with Down Syndrome? That would NEVER happen, because it’s WRONG. Why is it okay with albinism?
It’s NOT okay!!!
Please view my slide show:
Make an on-line slideshow at www.OneTrueMedia.com
Thank you to all of the parents for sending me pictures of your beautiful children. I couldn’t have made this slide show without your help.
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I was at my dentist’s office making a payment with Lyra a while back, and there was an older woman finishing up about the same time as us. She had been staring and making baby talk/saying Hi to Lyra for a few minutes. As we were walking out, me pushing Lyra in her stroller, the lady followed outside. Once outside I bent over to fix Lyra’s sun hat. The lady bent over to talk to Lyra and in her best baby-talk voice, said “What are you?” EXCUSE ME… At first I thought I MUST have misunderstood her, but then she said it again, “What are you?”…and AGAIN 2 or 3 more times! ARE YOU KIDDING ME!!! SHE’S A BABY, YOU IDIOT! WHAT THE HECK KIND OF QUESTION IS THAT!?!
Anyway, I was SO STUNNED after hearing these words come out of this woman’s mouth, that I just stood there…speechless…and then walked away. I was really kicking myself later that day for not saying anything. I should have at least given her one of Lyra’s cards.
There’s always something new.
Feel free to add more “Dumb things people say” in the comment section if you like.
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Sometimes the only way for me to deal with things or to get through a situation is to add a little humor. And thats OK… You need too be able to laugh it off once in a while. It’s kind of therapeutic for me and sometimes keeps me from bursting into tears. For example, when Lyra got her outfit made out of UV protective material for her birthday, I said “Look, she got a HAZMAT suit” or when I say she is like a pinball when she walks around bumping into things. However I would have very likely become defensive if someone else would have made those comments first. Of course she is still a baby and I will be careful not to say things like this when she is old enough to understand. You can see a pic of the outfit below.
Other times, laughing it off means I need to make a sarcastic comment in response to someones question thus preventing me from blowing up or smacking them. Generally the questions and comments are sincere, but occasionally there are the questions that are just plain stupid. For example, on Sunday afternoon we were at a restaurant and I had Lyra in the bathroom washing her hands. A young adult came up to us, with eyes WIDE OPEN, and asked, “Is that her REAL hair color?” I replied with something I read on the NOAH forum and said… “No, we hold her up by her ankles and dunk her in bleach once a week.” Then I walked out of the bathroom. Seriously, why would her hair NOT be her natural hair color.
Other times I just get bored with answering the same old question the same old way. I posted a question on the NOAH forum looking for some variety in how to respond to “Where did she get all that white hair?” Here are some of the suggestions I got from various NOAH members:
Some of those aren’t really untrue, just a little more interesting. Others are obviously just a bunch of baloney. I’m not condoning lying. Sometimes I just gotta make it through the day.
Here is a link to a section on another parents website called “Dumb Things People Say.” It really cheered me up when I first read it when Lyra was only a couple of months old.
Dumb Things People Say
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I found this beautiful story from a link on another parent’s website. Thank you Cassandra. It’s another way of looking at or describing what it’s like for parents who have a child who is different in some way. To me, it is also a reminder that you never know what God has planned for you.
_________________________________________________________________
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley.
All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
My baby girl is on the cover of a magazine!!! I wrote an article for the latest issue of Albinism Insight, a quarterly magazine published by NOAH. I had included some pictures to go with the article, but her picture being on the cover was a complete surprise. We were all very excited when we saw it. The article is basically a condensed version of the “history” section of this site. I couldn’t come up with a title myself. The magazine editor, Kelsey Thompson, titled it, “Life with Lyra: A new mom reflects on her first year as the parent of a child with albinism.” I was very pleased with how it turned out, expecially since I’m not much of a writer. I barely passed most of my english classes in high school and college.
The entire issue was wonderful and had a lot of really great articles.
We are all just so proud of Lyra!
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