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Wednesday, January 23, 2013

I just want to take a moment to step aside from talking about weight loss and health to talk about one of the biggest reasons I keep going: my amazing baby girl, Luna.

What sparked my want to write this blog about her was right before I put her down for her afternoon nap and started thinking back to her eye appointment a few weeks ago which lead to me think about our trip to the Gymboree Play & Learn class. But in order for all of that to make sense, first I need to explain Luna.

Luna is 1 of just 100,000 people in the US with Oculocutaneous Albinism. Or to give you the shorthand version of it, she's Albino.

She was born with red eyes, pale skin and white hair. I have to admit that I was kind of dumb to the idea that she was Albino at first; I thought her red eyes were going to darken to brown later on because both her father and I have dark brown eyes. I mean, babies eyes change all the time, right? However, her doctor confirmed her Albinism almost immediately. As a first time mom it's scary to hear something is different about your baby, especially when it's something you don't understand.
Her first eye appointment was when she was just a mere 6 weeks old and the doctor scared me even more because she gave us worse case scenarios only. We were told that part of her retina--the macula--was underdeveloped, but could never be fixed or corrected. Luna also has Nystagmus (her eyes shake) and back then they would tick back and forth like one of those old fashioned cat clocks. She said that it's too hard to tell whether her vision is good or not because she's so young but have we gotten in touch with Vision Intervention Services yet? No? Well, before we leave she will make sure to give us their number as well as some numbers for people who work with the blind. Yeah. Imagine hearing that. It was awful! Needless to say we (or, mostly I, really) cried the whole way home and off and on for the next few days. Then a few days later her father and I both cried when Luna showed us that she could see. He stuck his tongue out at her and she smiled while trying to copy him. Every. Single. Time he did it.
Since she had vision problems from the beginning, she developed slightly behind most babies at first. It took her a while to roll over for the first time and a while to hold herself up while on her belly but now she's ahead in her development.
At her 4 month eye appointment we saw a new doctor who is much, MUCH better. She said Luna is exactly where she should be for her age in terms of vision. She was very impressed with her which was music to my ears! She told us that if her prescription remains the same by the time she turned 8 months old, she would prescribe her glasses. Fast forward 4 months to now and we have her script but are waiting until next month to fill it (for insurance reasons). As it turns out, if she didn't have a severe astigmatism in both eyes and underdeveloped maculas, her vision would be damn near perfect. Being the research junkie I am, I looked up how to read and understand eye prescriptions and checked out a few vision simulators to get an understanding of how she sees the world. The verdict: things are fuzzy and stretched out, but not so bad that it hinders her.
Now that you know Luna a little better, I'm going to talk about our trip to Gymboree.

This was something I was wanting to do because I have no friends in my area and so Luna has never been around other kids her own age. I figured this would be something fun for us to do and Gymboree offers free "try us out" classes so you can try before you buy. Well, it was the most awkward 45 minutes of my adult life. I never knew how different Luna was from your average baby until she was around them. When all of the other babies, also her same age, were having a blast crawling up and down ramps and through tunnels, Luna was on top of me, holding onto my hands, jumping up and down. The teacher tried her hardest to get us more involved, but Luna wasn't interested. She wouldn't leave my side, and while she wasn't fussy, I could tell she was uncomfortable. She didn't care for any of the songs, dances or activities. At the end of the class the teacher has all of the mommies sit their babies on top of a giant, rainbow colored parachute and blows bubbles at them while singing. Luna couldn't see the bubbles, but was fascinated by the parachute. SO fascinated that she needed to taste it throughout the entire song. The reason why I say this was awkward was because the whole time all of the other moms and the teacher were looking at us with a "what's-wrong-with-her-baby?" type look and I didn't want to blurt out, "she's visually impaired, so she beats to her own drum!" because I didn't want to distract anyone from having fun into discussing something that' do I put it? Not sad, but I don't know, something I think they would have felt obligated to talk about. Especially if it turned out I was just imagining it all.
Looking back at it, I'm thinking Luna was overly attached to me because the brightly colored play room was probably a bit overwhelming. I'm thinking about trying again once she gets a little older and has been in her glasses for at least a few months, just to see if she enjoys it more.

Anyway, I never use the phrase, "I feel so blessed" but I do. She is the most amazing little girl and I'm so lucky to be her mom. I know things aren't always going to be easy but I wish I could go back in time and tell myself that they aren't ever going to be as bad as I was thinking. When you research Albinism, you find a lot of scary things mostly relating to vision. I mean there are some kids who even after being prescribed glasses still can't see well enough to be able to read and therefore need to learn braille. And sure, that's not the worst thing in the world, but it makes every day things like playing outside, riding a bike, swimming, much harder or even impossible.
However, Luna will be just fine. Her eyes have gained pigment and are now blue and her vision is pretty good. I mean it has to be with how destructive and curious she is.

She's my little monster and everything I do, I do for her.

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Member Comments About This Blog Post
    emoticon she is sooo cute! and has such a wonderful mommy too
    1971 days ago
    She is so beautiful. Try not to get discouraged by people "looking at you funny"....they just don't understand. I hope you find some great Mom's to hang out with.

    P.S. I LOVE her name!
    1971 days ago
    Amazing .. thanks for sharing! She is a beautiful little girl, so glad she is doing well!
    1972 days ago
    She is too cute!!!
    1972 days ago
    she is georgeous!
    1972 days ago
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