Parent of a Child with Albinism

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“The easeful days, the dreamless nights; the homely round of plain delights; the calm unambitioned mind, the simple stuff of summertime.”
~ Aster Austin Dobson

We’ve finally started having a few nice days when we can go outside and play.   Yes, I know spring doesn’t really start for 2 more weeks.

I have no idea what she’s pointing at in this next pic.

Lyra is determined to invent a new sport involving a bat and a soccer ball.

FORE!!!

“Of all the joys my life brings, a child’s smile makes my heart sing.”
Author: unknown

Over the last couple of weeks I’ve been borrowing a friend’s Sony Digital SLR camera.  It’s AMAZING how easy it is to take good pictures when you have a good camera.  It’s been so much fun!  I’ve been taking pictures like crazy.   Lyra really knows how to ham it up for the camera.

Here are a few of the pictures of Lyra and Dominick taken by Rick Guidotti at the NOAH conference last month.

Lyra- July 2008

Lyra- July 2008

Dominick- July 2008

These were taken by our friend Heather Kirkwood.  

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…)

Click on the thumbnail to view full size.

Anyone who knows or has read about how ornery Lyra is, knows how appropriate this costume was. I made her costume out of a white t-shirt, white pants, electrical tape, a foam ball, black duct tape and an oatmeal box. These pics are really bad quality…I had to pull them from a camcorder video because my camera wasn’t working.

I can’t keep her sitting anymore.

She tries to pull up on everything.

She still stands on her toes so she is very wobbly.

Lyra’s hair is getting sooooo long! She has a TON of hair. She’s got a second set of bangs growing under her bangs. That new hair is almost to her eyebrows.

The thought of cutting it makes me sad. She’s my last baby and I’m in no hurry for her to grow up. I’m not ready for her first haircut. ( I love her hair.

I can’t put it in twisties anymore. The other day she pulled one out and was chewing on it like a piece of bubble gum. She’s not real fond of headbands or clips either.  As in the first photo above, without something putting her hair up, she looks like Stella from Over the Hedge.