Parent of a Child with Albinism

Second Soccer Season

admin — Tue, 31 Jan 2012 18:41:10 +0000

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. :( [...]

Seasons Change

admin — Fri, 06 Jan 2012 23:08:26 +0000

Albino Revisited

admin — Tue, 16 Aug 2011 04:27:13 +0000

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 [...]

Kindergarten IEP

admin — Fri, 15 Jul 2011 03:16:30 +0000

FINALLY! Here is Lyra’s IEP for next year. It’s definitely not perfect, but it’s okay…for now. We’ll see how things go once school starts. I’ve been feeling like a total slacker as a parent lately. I still haven’t scheduled Lyra’s Low Vision evaluation and the first day of school is only a month away. Until [...]

Lyra Graduates from Preschool

admin — Thu, 19 May 2011 05:16:57 +0000

I am still in denial that she is actually going to be starting kindergarten this fall. She’s too LITTLE for kindergarten! I tell her I don’t want her to grow up, but then she tells me, “it’s okay mommy, I’ll still be your baby.” Make video montages at www.OneTrueMedia.com ©2012 Parent of a Child [...]

New Song

admin — Fri, 06 May 2011 21:21:56 +0000

Lyra Joins the Soccer Team

admin — Fri, 18 Mar 2011 08:19:40 +0000

Lyra began showing an interest in playing soccer while watching her big brother’s many soccer practices and games over the past two years. Any time the soccer ball would go out of bounds near her, she would yell “I’ll Get It!” and immediately run to try and kick the ball back. Fortunately a big white [...]

When to tell?

admin — Tue, 01 Mar 2011 07:14:23 +0000

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 [...]

Still Singing

admin — Fri, 21 Jan 2011 21:04:50 +0000

Not much of anything new and exciting happening lately. Lyra’s doing great in preschool! There haven’t been any changes in her vision. Lyra’s just been busy being Lyra. Make an on-line slideshow at www.OneTrueMedia.com ©2012 Parent of a Child with Albinism. All Rights Reserved..

Beautiful Cause

admin — Fri, 21 Jan 2011 05:51:22 +0000

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 [...]