This past fall, Lyra completed her second soccer season.  While she enjoyed the excitement and her success in moments like in the pictures above,  overall, it was not a great soccer season.  It was more discouraging and depressing.  And unfortunately, there were many more moments like in this next picture, than the ones above.  🙁   The soccer teams she played with this time were a lot more competitive compared to her first season.  Lyra played on the team for kids ages 6 and under, but because of when her birthday is, she was one of the youngest ones on her team.  Plus, she isRead More →

Most everyone knows how I feel about the word “albino”. It’s no secret that I avoid it like the plague. And I’ve never been one to keep my opinions to myself, see Here and Here.  The word albino evokes so many different and very strong emotions in me that I don’t think I will ever be completely okay with hearing it or using it. But… *sigh* A few months ago I began doing some serious thinking and self-analyzing over my issues with the word albino.  What prompted this time of deep thought/reflection was the sudden realization that Lyra would be starting Kindergarten in the fall, interacting with lotsRead More →

On more than one occasion I have heard other parents of children with albinism ask the following question: At what age should we tell our child he/she has albinism? This question really boggles my mind. It’s a legitimate question, just not one that we ever had to ask. Lyra knows she has albinism, but there was never a specific point in time when we sit her down and had the talk.  My opinion on this is that there should never be a time or age where you have to TELL your child that he/she has albinism because it should just always be known.  I really don’tRead More →

This past week Lyra got 10 1/2 inches of her hair cut off.  Her hair had grown SOOO long, to the point of being unmanageable, and she desperately needed a haircut. We figured if there was ever a time her hair would be long enough to donate, this was it. It’s not something we really think about much, but people with albinism are not immune to cancer or other illnesses that could cause hair loss.  I think that if for any reason, a person with albinism needed a wig, that they would be incredibly grateful to have one that was their natural hair color. WeRead More →

My article, Sight Unseen was recently published by the Albinism Fellowship of Australia (AFA) in their quarterly newsletter called Beyond Blonde!   This is the second publication of my article. A big Thank You to AFA for allowing me to share this on my blog!  Click on the picture above to view the first 12 pages of the issue.  🙂Read More →

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.Read More →

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. 🙂Read More →

After working on this little project for over a month now, I am finally ready to present this to all of you: Because of the unique needs of children with albinism, it can a very challenging task finding helpful products. I thought it would be nice if parents could find toys and books that are good for low-vision and also sun protection products all in one place. I created an Amazon store and then searched through the hundreds of thousands of products on to find the ones I thought were the best. My selections were based on my research, personal experience, and personal opinion.Read More →

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 eyeRead More →