Have you ever wondered what life would be like if you couldn’t go out and enjoy the sun, to be able to sit outside soaking in those beaming rays of light? I suppose it might be similar to having to grow up without a mother’s love. Luckily for this little girl, who has a rare disease, XP, that causes her to be extremely sensitive to the damaging effects of ultraviolet radiation, and can’t go out in the sun without heavy protection, she has a mother that shines for her.
This is Libby
Mother to a daughter who is 1 in a million
Believes that confidence = beauty
And this is her bedhead…
As I talk with Libby, I realize how lucky her daughter really is. She a mother who sacrifices on a daily basis for her family by working and going to school to become a teacher, beginning that career next fall. She doesn’t see it as much of a sacrifice, though, knowing that it will help her family learn and grow as well as make her into the person she is meant to be.
She also knows that becoming a teacher will not only benefit her family but those she teaches. Having overcome many of her own challenges when it came to feeling less than beautiful when she was younger, being bullied for being overweight, she wants to help kids have self-worth, discover who they are early in life and to help them forget what others think of them, so they can be happy and confident doing what they love. This is her secret to happiness, having gained her own confidence—her personal definition of beauty—from her mother who always told her that she was beautiful, that everything would be okay and that she was worth it.
In a way, she has learned to shield herself from the damaging effects of the media and anyone else’s definition of beauty, much like she now has to shield her daughter from the sun. If only there were a filter for real life, like the UV filter that has to be on their windows, that would block out all things that are harmful to us. But things aren’t always that easy.
She shares, “I’ve always had a hard time being a positive person. But even from the time she was diagnosed I was like, ‘Let’s be happy, let’s be happy.’ It’s hard when you know that your kid isn’t going to have the same experience that you did or that the other kids have. And really it’s not that bad to live with. She could have much worse things, you know? All we have to do is avoid the sunlight. It is something we can live with, something we can grow from and it’s going to make all of us better people.”
“People don’t even realize what it’s like living that long in the dark and how much you miss that sunlight.”
Until they had that film on the windows, including the car, they spend 8 months at home with all sunlight completely blocked out, unable to even open their blinds.
For a little girl who spends so much time at home, enjoying such little natural light, she is a ray of sunshine. When she can go out with all her protective gear, of course, she is waving to everyone she sees and is always making new friends; she is the happiest kid on the planet. And with a beautiful mother who shines from the inside out who wouldn’t be?
It is from her life experiences and all those things she is experiencing now that she has gained a true appreciation for life and all the little things, trying her best to never take them for granted. And she knows, above all else, “That if we sacrifice for the lord and do what we are suppose to do he’ll help us figure out how to fulfill our dreams in ways that we NEVER expected. I mean what were the odds??”
Her daughter may not be able to enjoy the sun like we all do, but she has a mother who shines for her. She embodies what this site truly stands for: It is the sacrifices that we make, the things that we believe and what we do each day to help our children learn and grow that make us beautiful!
Libby you are 1 in a million!
I mean what were the odds, that you would be her mom?
You are beautiful!
To read more about XP, visit their blog.
Mothers, you shine brightly!
CLICK HERE to read about other bedhead moms!