Tuesday, October 30, 2012

Goodbye Tanning Beds.....

Tanning has always been a hot trend, more so with women than with men, but a hot trend for all none the less. When I was 16 I used to BEG my parents to let me go tanning in the tanning beds.  They held out as long as they could but eventually caved on the issue.  I was determined to get rid of my pasty white outer shell and trade it in for a mocha brown one.  Turned out, I tanned very well for being so pale.  I hardly ever burned, and it didn't take very many sessions to come out with a "golden glow" as they called it.  Problem was, when I stopped hitting the tanning beds, hello pasty pale--welcome back...not. When I got older, pre-Liam, I only tanned for events like beach trips, summer graduations, weddings, etc.
Then came Liam.
Over the past year of coming to understand and process Liam's albinism diagnosis, I have begun to think of our other future children, the ones with a 50% chance of also having albinism. Brian and I will welcome the idea of another child with albinism if it be in God's plan for our family, but then my thoughts turn to little girls.....little girls with albinism......little girls with albinism that eventually grow up and become little 16 year olds with albinism....and then my thoughts turn to that very first time I hear them ask...
"Mom why can I not/when can I start tanning?"
You see to society, tan is beautiful, not pale. No one in high school ever says
"I wish I were pale!"
So when the time comes, and it will come, what am I to say? How do I justify that pale is beautiful when all their mother wants to be is tan?  What happens when I explain the issue with their skin, how their skin will not tan, how it would only be painful and impossible to become tan or in their case lobster red. I can imagine the conversation going just like this:
"It's not fair mom, I'm the palest girl in school."
(Reinforce pale is beautiful)
"But I just want to be tan!"
(Reinforce pale is beautiful, God made her just the way she is.)
"I don't want to be pale!"
(Reinforce pale is beautiful, God made her just the way she is, and remind her she is not alone in this.)
"It's not fair mom, you get to be tan! I want get to tan like you!" (Not that any kid in high school ever wants to be like their mom but you get the idea.)
Insert heart break here......
How....How do you justify and explain this to your 16 year old daughter? My 16 year old self pulled out a similar complaint and I know looking back no response would have done the trick...

To me, and this is my own personal belief, it is not enough to just tell my children, my pale children with albinism, that I think they are beautiful.... I need to show them I believe it. Show them I desire to be just like THEM not society's version of beautiful. That I believe my own pale skin, though tan in comparison to their's, to be beautiful and just how God made me.  That I disagree with society and desire not to change my pasty pale skin.

I want to be like the moms who shave their heads for their children with cancer, showing them beauty is not in a girls hair or any other outer embellishments ..beauty is deeper than skin and hair, make up and jewelry.  Beauty is what is on the inside. So to do that, I must try to embrace my pale outer shell so that one day I can show my daughters that OUR outsides are beautiful just as our insides because they are just the way God made us.
Pale is beautiful.............[and it's about time society discovered this as well]
So goodbye tanning beds, hello pale! Welcome back! Even in the face of two summer weddings, you'll do just fine for this mom.

Embracing it, even in short bridesmaid dresses!

Sunday, October 28, 2012

The Partners Print/Braille Book Program

We are approved!!! Liam was approved for the Partners Print/Braille Book Program, a partnership between Dolly Parton's Imagination Library and the American Printing House for the Blind. The goal of Dolly Parton's program: to provide six books a year, every year of a child's life up to six years of age, to encourage early reading and a love for books in small children. The goal of their partnership with American Printing House for the Blind is to provide these books in Braille for children with visual impairments.
We had almost forgotten that we had applied in the first place, since they have a decent waiting list, until we received our first braille book in the mail. We are so excited to be receiving these books to work with Liam on his Braille as he grows. One day this boy will love to dive into a book just like his parents do, only his books with be much thicker with their textured pages.

If you'd like to submit your child for the program please visit:

Saturday, October 27, 2012

Like a Fancy Old Typewriter.......

Our new Braille Writer!! 

We were so blessed by someone at our local school for the blind to get a great deal on this sweet piece of technology. Right now it's mostly helping mom and dad study their Braille, but hopefully, before we know it, we will be using it to teach Liam his Braille. So neat the technology they have these days!

Thursday, October 25, 2012

Help For Those with Albinism

Notice the new link above? 

.... That's all the explanation I'm giving for now, you'll all have to go check it out for yourselves. 

Monday, October 15, 2012

White Cane Day

October 15th is international White Cane Safety Day. It's purpose is to celebrate the independence of those with blind and visual impairments. It celebrates the success and achievements of those in the blind and visually impaired community and the tool for their independence- the white cane.
Also called Blind Americans Equality Day, it's a day that I never even knew existed until Liam came along, but that will be celebrated in our house from here on out.
So Happy White Cane Day all!

(Extra fact: The 3rd week in May is national Whit Cane Week, slightly ironic that Liam was born the 4th week of may just missing White Cane Week by three days!) 

Sunday, October 7, 2012

Starting Our Texture Book

A texture book is something that a lot of visually impaired/blind children enjoy playing with when they are young since they often explore the world best through touch.  They are very good for use in therapy with children of all sorts of disabilities that focus on the use of other senses other than just sight and sound. I have been trying to collect different textures over the past few weeks to put into a large book for Liam and so far I have collected the basics: soft, rough, smooth, and what I call fuzzy/ticklish. I know there are many more textures out there to be found but these I found so easily in Hobby Lobby's paper crafts department; put them together with ring binders and there you go! A homemade texture book! I know you can buy huge kits for fairly cheap online that come with many different textures to teach children, but I thought I would just form my own based off what I could readily find. Cheap, fun to make and fun to add to over time!

I should add I used:
Glitter paper (rough but better than sandpaper)
Foam paper (smooth)
Felt (soft)
Strips of feather fur (layer them for better texture)
And I will be adding several in the next few weeks for other textures such as grainy, slimy, sticky, velvety, and crinkle.