Preston Party of Six

Preston Party of Six

Sunday, August 30, 2015

Scales, Stares, and Six Flags

There is one thing I’ve come to realize about Jenna’s skin is totally unpredictable. 

Ichthyosis has stumped me.

For some reason, beyond my understanding, our little Jenna’s skin has not been looking good lately. 

It has been extra dry and extra scaly.

And these scales are very visible…very.

Hence the stares.

They seem to never stop.

Most of the time, Jenna’s scaly skin doesn’t cause her any pain.

But stares from other people are bound to cause her pain.

As Jenna’s mom, my first reaction has often been to try to protect her from these stares.  Although she doesn’t even know people are staring, there will come a day soon that Jenna will realize people stare at her…and I won’t always be there to protect her.

But today while we were at Six Flags having a blast together as a family, my perspective on this began to change. 

While Jenna and I were in line for her favorite “Canyon Blaster” roller coaster, it was obvious that some people were staring at her.  It was in that moment that I sensed a change in my heart about having to protect her from these stares.

People will stare, and I shouldn’t shield her from this. 

Rather, I will love her through it and teach her to stand strong.    

So in that moment at Six Flags, I picked Jenna up, held her tightly, and whispered in her ear, “I love you so much!”
And then we rode the coaster with our hands held high, laughing the whole way.

I have no explanation for why Jenna’s skin looks better one day and worse the next. 

And I don’t owe any person that stares an explanation for her scales.

And I certainly have no good, reasonable, healthy, or sane explanation as to why our society is so darn obsessed with outward appearances.

There is no doubt in my mind the road ahead for Jenna will not be easy.
But I also have no doubt in my mind that Jenna knows she is loved by her family.
And as her understanding of being loved by her family grows, I pray she will come to a deep understanding of her Heavenly Father’s love.
It is by this foundation of love that Jenna will have the ability to laugh and raise her hands in victory when people stare, believing this truth: 

So bring on the stares. 

No longer do I feel the need to shield Jenna from these stares because her skin…her beautiful skin, scales and all…is simply part of who she is.  And only a small part.

If there is one thing Jenna can help teach others it is that we are all so much more than our outward appearance.

So stand strong, sweet girl…you are beautiful—inside and out—in so many ways!


  1. I deal with this with my baby girl who has one eye and chooses to not wear a prosthesis currently. I have stopped caring. I adore her, and so do her MANY brothers and sisters. You keep on loving life sweet Jenna!

    1. WOW...thanks for sharing this! I wish I knew who you were...but thanks for sharing this about your precious daughter. God bless you!!!

  2. Hi Kelly! Has she been tested for celiac disease? I just got tested and turns out I do have it. I feel SO much better and my skin conditions have stopped. I didn't have Ichthyosis but did have some other skin conditions. Removing gluten from her diet might help. Best of luck!