August 2007 - Parent of a Child with Albinism

Learning from Bekah

I am just like Rebekah and Rebekah is just like me. She teaches me. I see her…and then I can acknowledge and understand things about myself.
I hope she learns as much from me.
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I wish I had the motivation and thought I have at 3AM…at 3PM instead.

Sun Protective Clothing

This pink outfit in the first picture and the brown pants in the second picture are made of Solarweave fabric. It provides an SPF 30+ and is very loose and breathable, and just really convenient. It ended up being a lot less expensive than the one-piece sun-protective outfit she has, that is made out of the same type of material. You can see that out-fit in my last post here: Laugh it Off.

We purchased one yard each of the fabric in pink, tan/brown, and white for a total $30. My mom, who is an awesome seamstress, was able to make Lyra a shirt with a hood and a pair of pants out of the pink, 2 pairs of pants out of the brown, and 2 shirts out of the white, one with a hood and one without. That ONE one-piece sun protective outfit retails for $40. Obviously, if you know someone who can sew, buying the fabric by the yard and making the outfits, is a much better deal.
Lyra wears these A LOT. It’s much easier to throw these on her to go run errands than to slather on half a bottle of sunscreen. For now, as you can see in the picture below the pants are long enough that they even cover her feet. 🙂 I know it kind of looks like she has some GINORMOUS long legs, but really my mom just made them a little extra long so Lyra wouldn’t grow out of them as fast. I told my mom she should start her own line of inexpensive sun protective clothing, but so far she doesn’t seem too interested. Here is the website where we purchased the fabric: Sungrubbies. They have the fabric in pink, blue, tan, black, and white. If having outfits made isn’t an option, you can find several websites/retailers of sun-protective clothing in the Resources section. They can provide just as much sun protection and can be a handy alternative to sunscreen, AND, you don’t have to reapply these every 2 hrs.

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Laugh It Off

Sometimes the only way for me to deal with things or to get through a situation is to add a little humor. And thats OK… You need too be able to laugh it off once in a while. It’s kind of therapeutic for me and sometimes keeps me from bursting into tears. For example, when Lyra got her outfit made out of UV protective material for her birthday, I said “Look, she got a HAZMAT suit” or when I say she is like a pinball when she walks around bumping into things. However I would have very likely become defensive if someone else would have made those comments first. Of course she is still a baby and I will be careful not to say things like this when she is old enough to understand. You can see a pic of the outfit below.
Other times, laughing it off means I need to make a sarcastic comment in response to someones question thus preventing me from blowing up or smacking them. Generally the questions and comments are sincere, but occasionally there are the questions that are just plain stupid. For example, on Sunday afternoon we were at a restaurant and I had Lyra in the bathroom washing her hands. A young adult came up to us, with eyes WIDE OPEN, and asked, “Is that her REAL hair color?” I replied with something I read on the NOAH forum and said… “No, we hold her up by her ankles and dunk her in bleach once a week.” Then I walked out of the bathroom. Seriously, why would her hair NOT be her natural hair color.
Other times I just get bored with answering the same old question the same old way. I posted a question on the NOAH forum looking for some variety in how to respond to “Where did she get all that white hair?” Here are some of the suggestions I got from various NOAH members:

It is all in the genes!
From God.
I drank alot of milk when I was pregnant.
The supermarket–aisle #6, Loreal color #35, $10.00 and you too can have the same color!
It was “special order.”
From Santa Clause.
From the mailman.

Some of those aren’t really untrue, just a little more interesting. Others are obviously just a bunch of baloney. I’m not condoning lying. Sometimes I just gotta make it through the day.

Here is a link to a section on another parents website called “Dumb Things People Say.” It really cheered me up when I first read it when Lyra was only a couple of months old.
Dumb Things People Say

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Toy Information Links

Toy Ideas for visually impaired infants, toddlers, and preschoolers. -from Texas School for the Blind and Visually Impaired.

Toys, Glorious Toys! -by Jean Robinson, Family Support Specialist, Texas School for the Blind and Visually Impaired.

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work is licensed under a
Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.