I’m back! It’s been a while, but I’ve been busy. I just got home from my 11th day of middle school! I have so much stuff to carry around, my laptop, my binder, my Visiobook, and anything else I’d need, so I have a rolling cart to put all of my things in. People always refer to my cane as “a stick”, I don’t think I’ve heard one kid say “cane”. During sixth grade orientation, someone said, “Don’t hit me with that stick”. and yesterday, Someone pointed to me as I walked by and said to her friend, “That girl keeps hitting me with herRead More →

A while back I went rock climbing with Alphapointe at RoKC. It was really fun. I was able to hang out with my friends from KSSB which I hadn’t seen since February. I was scared as I got towards the very top of the walls, probably because of my depth perception… It made it seem like I was way higher up than I actually was. There were some walls I climbed that I didn’t need a harness, which I was pretty good at, but on the really tall ones I did need one. I had only gone real rock climbing once before when I wasRead More →

I have been having O&M (orientation and mobility) training for a few months now. It has been going really well. I always need to remember to not look down, to keep the cane in front of my belly button, and to always hit the wall or other objects to the side of me when sweeping. Sweeping means moving the cane from side to side. Mrs. Jill and I came up with a fun saying for when I need to stop. “Itch Or Switch”. When I have an itch or I need to switch hands. I have a small, squishy ball that I keep in my handRead More →

I’ve recently started playing this year’s spring soccer season. I’ve been playing since I was 6 years old. Here are the pros and cons of playing soccer related to my vision: Sometimes I misjudge the distance of the goal and miss it because of my depth perception. I always need the ball to be a bright color so that I see it. One time they played the first half with a green ball, but they switched it for the next half. One time, a kid on one of my teams called me a vampire during practice. I just told my mom what happened and thatRead More →

It’s me, Lyra. The star of this site! My mom can’t keep up, so I’m taking over for a while. My birthday is coming up and I’ll be double digits! I don’t really know what to post except that I’ve been making iMovies on my dad’s iPad Mini. There will probably be videos of them on here soon.Read More →

Today is International Albinism Awareness Day! Last Year the United Nations General Assembly adopted a resolution establishing June 13th as International Albinism Awareness Day. This date was chosen since it was on that day in 2013 that the UN adopted its first ever resolution on albinism. On May 5, 2015, the UN dedicated a website to persons with albinism. See it here: http://albinism.ohchr.org. This year, to celebrate and promote International Albinism Awareness Day, we will be posting albinism related graphics, links and information on all of our social media. NOAH had several other ideas that would be good to do to participate and promote albinism awareness.Read More →

Does anyone even read this anymore? 😛 Today I decided I am going to start writing again! It’s been way too long! And I miss it… 🙂 For starters, Lyra just turned 9 this month. And today was her last day of 3rd grade!  I don’t even know where to begin with everything else that’s been going on.  While I think about that…here are some new pictures of Lyra.Read More →

When Lyra was born, her diagnosis of albinism was a shock to all of us. The weeks and months following were a time of confusion and worry about what it all meant.  Neither my husband nor I had ever seen someone with albinism in person.  One thing that we really wanted to be able to do was to meet and connect with an adult with albinism. The very first person with albinism we met after Lyra was born was a local woman named Heather Kirkwood.  The first time we met Heather was at our NOAH Bowl-a-Thon in 2007.  Since then, she has joined us atRead More →

Last year I discovered that at Lyra’s elementary school, they utilize A LOT of parent volunteers in regular classrooms and throughout the school building.  Knowing that most of these volunteers would know little or nothing about albinism, I decided to create a document with some of the need to know information about Lyra.  I thought it would also be useful for Lyra’s teacher to have available for substitute teachers. My biggest problem has been deciding which information is “need to know” and which isn’t. This document started out as 3 pages!!!  🙁  I now have it cut down to about 1 ¼ pages, but if IRead More →

We are still working on finishing up Lyra’s IEP for this year.  Hopefully we will have the final version completed by the end of next week.  The following is what I wrote to be included in the “Parent Concerns” and “Plans for the Future” sections of her IEP. ________________________________________________ Lyra is a sweet, caring, and expressive little girl. She is relentlessly curious and never seems to stop asking questions. She is fiercely independent, stubborn, and intelligent. At times, her brain/mind seems to move too quickly for her mouth or body to keep up. Lyra has advanced language development, is very articulate and is good atRead More →