Comments on: Our First Year

By: Lynsey

Lynsey — Sun, 05 Jun 2011 03:09:06 +0000

Reading this post I feel like I am reading a book someone wrote about me. I have two children, a boy 2 1/2, and a little girl 1. They both have albinism and are the most beautiful things in the world to me. It was definately hard to hear the word albinism when the doctor asked me about it at Jack’s first eye appointment, he was 6 months old. My mom told me she will never forget the look on my face when he said that word. It has been a hard thing to over come, I mean as a mom you want your child to be perfect but like you said I soon came to realize that these are the kids that God chose for ME! It is nice to know there are other parents like yourself going through the same thing we are! Thank you!

By: Christine

Christine — Fri, 31 Oct 2008 13:59:26 +0000

I just read Lyra’s history and words can’t describe all the emotions I have right now… My son, Owen, was diagnosed on Wednesday with albimism. Just two days ago. He is 7 weeks old and our first child. I want to thank you for writing and putting out all the information you can… it’s helping me more than i can say! I found the NOAH organization and I think it is wonderful too! That is where I am finding out more information…. and like you said, knowledge is power! Thanks you so much and God Bless YOU and your beautiful family!

By: Sarah

Sarah — Wed, 15 Oct 2008 03:31:37 +0000

What a beautiful little girl you have and with such a lovely name.

I stumbled across this blog through youtube, and found it most informative.

One thing stood out to me, (as a photographer) Lyra can still have portraits made if you find a photographer willing to shoot solely with natural light. Natural light really does create the best portraits and is entirely flash free. Even if she isn’t very tolerant of strong light its possible to get lovely portraits in low light. Just thought I’d throw that out there for you!

By: Dave Brodbeck

Dave Brodbeck — Sat, 12 Apr 2008 00:02:32 +0000

It is really great reading this. I really have never asked my parents about how they felt when they found out about me. I can relate some now I guess as our son has high functioning autism. All that said, it seems you are doing a great job.

If you ever want to explain how she sees, the best response I have come up with is that it is like there is less detail in the world, like her video card is not as good as yours or that say I see in standard def and you have an HDTV. People seem to be able to relate to that.

By: Cassandra

Cassandra — Wed, 05 Mar 2008 07:06:17 +0000

I just reread this, I have read it multiple times. I must say I can relate to everything you said, it is extremely hard to get that diagnosis and learn everything and adjust to this new lifestyle of sunscreen, hats, sunglasses, glasses, therapy etc…

I remember the day we found out and when the ophthalmologist said albinism my head went blank and at the end I had to ask Chris what that meant, I didn’t want to believe.

What a roller coaster ride the first year is!