Anna Liberty

A girl who's one-in-a-million

Anna’s first video

A few weeks ago, I showed Anna this website. I guess I never thought about sharing it with her before…or maybe now she’s just old enough to realize what it is.  She told me she wanted to start posting here – by using her favorite thing – YouTube.

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2nd grade

Right before sunrise, the first day of 2nd grade.  I first asked Anna to hold up this photo and smile.  Then I said, “Anna, just hold it however you’d like.”

The result is perfect.

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Go Jazz!

She’s still a little young for it, but I’m trying to train up Anna to be a Jazz fan like her dad.

Click the image to get a PDF version you can print and display if you’re a Jazz fan, too!

Take note 2017

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Anna update

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Just thought I’d share some recent photos of Anna. She’s doing really great. Loving kindergarten and her friends and family.

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Our new home is now safe!

Today is a wonderful day! After a busy year and a magical Christmas, today Nate from Glamour Glaze came to our home. We might have been more excited for Nate’s visit than we were for Santa’s!winter home

 

Thanks to the generosity of Nate and Glamour Glaze, 3M, and the XPFSG, our home is now 100% safe for Anna. We can open the curtains and blinds and let the safe sunshine into our home!

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Anna’s Little Sister

stick figure familyWhen people learn about XP, one of the questions we get is “Are you guys going to have any more kids?”  They wonder if we’d want to risk having another child with XP. We even had one doctor advise us to not have any more children.  That one shocked us here in big-Mormon-family country.

I wonder if people realize the subtext of what they are asking.  It’s almost like asking if we’d have Anna over again if we could. The answer is, in the most loving way possible, “OF COURSE, YOU IDIOT!!”  Anna is an amazing girl who will live a long and wonderful life safe from UV radiation.  And any brothers or sisters that come along, whether they have XP or not, will be welcomed into our family with love and gratitude. 

The fact is, Anna’s little sister has a 25% chance of inheriting XP.  (For you non-math majors out there, that means she has a 75% chance of NOT having XP.)

When Libby and I have discussed it, we sometimes think it would be easier if Anna’s little sister has XP.  We already know how to take care of her, and it might be easier emotionally for both of them if they have to live by the same set of rules when it comes to sun exposure.  On the other hand, we wouldn’t wish XP on anyone, so we would prefer that she does not have this rare, life-altering skin condition.

When it comes down to it, we are excited to have another gift from God join our family.  I’m incredibly blessed to have a loving wife, a extra-special daughter, and another on the way.

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Anna Liberty Goes Country

Anna’s mom loves country music. Give her a sunny afternoon with the Dixie Chicks, Keith Urban, and a diet coke, and she’s set. So when Brad Paisley (who is a supporter of the XPFSG) came to town, Anna’s mom was more than excited to bring Anna to the big nighttime outdoor concert at the USANA Amphitheater.

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Brad Paisley’s manager generously offered  three front-row meet-and-greet tickets to the show, thanks to the XP Family Support Group’s efforts.   Anna’s mom and aunt joined her for a fun-filled night.  Anna’s aunt Lizzie (who also has XP) and her parents and sister were able to go to the concert, too.

They arrived just in time to head backstage and take a quick picture with Mr. Paisley. He was kind and down-to-earth.

Brad Paisley

During the show. Anna wore gun range ear muffs because it was so loud at the concert. She danced and was the most popular girl in the area as the youngest and newest member of the unofficial Brad Paisley fan club.

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During one point in the show, Brad was wailing on his electric guitar.  As he approached our side of the stage, he bent down to Anna and said, “Hi there, baby girl.”  Chris Young, who opened for Brad, also came over and talked to Anna at one point.

And to top it all off, at the very end of the show, Brad took off his custom white Stetson and placed it on Anna’s head.  (Anna’s mom is wearing it in the photo at the top of this post).

We are grateful to the XPFSG and Brad Paisley’s team for giving us this once in a lifetime experience!  Brad Paisley has a fan for life.

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Need for Speed

During a recent visit to Anna’s great-grandparents, Anna discovered the joy of driving.

I’d say  more about it, but you can witness it for yourself!

This is the first of many catch-up posts to come…sorry for the lack of updates!

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Anna’s Sunshine

Today is a great day.  It’s Anna’s mom’s birthday!  Yesterday Anna was telling us all about how we should have a “bewthday pawtee” and that Mom should “blow the candles on the cake.”  And don’t worry, we will.

Libby is an incredible mom to Anna.  She has faced the challenge of XP with a positive, happy attitude, and is such a great example to Anna an everyone around her.

Last summer our friend Wendy posted about Libby on her wonderful BedHeadMom.com blog.   Trust me, you’ll love reading this.

http://www.bedheadmom.com/her-daughters-sunshine-2/

Happy Birthday, Libby!

WE LOVE YOU!

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Anna at Play!

We took Anna to a safe indoor playground at a local indoor play place.  She loves it!

The above video is short – and is a masterpiece of multiple angle editing. Ha!

Anna’s mom plans many return trips here during the summer.

The next video is quite a bit longer. It’s just fun to watch her play!

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