Wednesday, April 2, 2014

WAGR Wednesday~Incognito

They always look so cool; styling with their sunglasses.  But, the sunglasses that our kids wear are not for fun; they are not just a fashionable accessory.  Because our children with WAGR have aniridia (no irises in their eyes), they need sunglasses in order to alleviate their photo-sensitivity.   Sunglasses are not a choice; they are a necessity

Evie didn't always cooperate with wearing her sunglasses.  As a baby, we had even purchased a higher priced brand of sunglasses called Baby Banz.  While these sunglasses came highly recommended, Evie's ptosis (heavy, drooping eye lids) was only aggravated by the fact that the sunglasses would wrap around her head and press the eyelids down more.  She did NOT like wearing them.  I have heard that it's quite difficult to get infants to keep sunglasses on at all; so we started with hats.

Tight hats seemed to aggravate Evie as well.  She did not like the tightness of the tiny infant baseball caps that we bought.  I found that the was much more cooperative in a big floppy hat.  Once I realized that she would leave those on, I went out and  bought as many as I could.  I even went in to Gymboree and asked for any clearance hats they might have "in back" and found the mother-load of discounted, adorable hats.

In order to work up to sunglasses, and yet be able to afford them when they would break or get lost, I started buying inexpensive, but styling ones from The Children's Place.  They would have a great variety of sunglasses and sold them 2 for $5.  We had a couple million of them.  

Once she was used to wearing these sunglasses, and she realized how much they helped keep her comfortable in the outdoors, she started to ASK for her sunglasses as we'd leave the house.  Since she was asking for them, and was no longer comfortable being without them when outside, we knew we could buy the more expensive ones without the great risk of losing a pair each week.  Julbo sunglasses were then, and are still today, the sunglasses that she wears.  They "wrap" around her face well, blocking out any light that might even try to sneak through the corners of the sunglasses; and they are very dark lenses. 

There are also swimming goggles that have darkened lenses and that's what Evie uses in the water.  Again, it wasn't easy to get her to wear goggles, but due to the sensitive nature of her eyes, and the fact that she's more susceptible to infection in her eyes, not wearing goggles was NOT an option.  She either wore them, or she couldn't get in the pool; that was our rule.

I'll be the first to stress that good sunglasses for our kids are not cheap.  Some of our kids even wear transition lenses, so they are built right in with their regular glasses.  We have started to ask for money for sunglasses for Evie's birthday at times; but she really has gotten so good about keeping track of them that we can have a pair for over a year, and don't need to replace as them as often as we did in the beginning.  Some of our kids with WAGR did GREAT with the Baby Banz too.  The key is to remember that you have to be patient and try a variety in order to find the right match for each individual.

And that's how our kids become the Hollywood mega-stars that they are.  They wear those stylish sunglasses around the town and create an aura of celebrity that follows them where ever they go.   

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