Tuesday, February 24, 2015

Tiptoeing around words...

"Oh she's gorgeous!" and "Oh... how precious".  As a mom, you know the difference in these two phrases when they are used in reference to your baby.  Especially when you have a child with a visual difference, or special needs.  And of course, I was and sometimes still am, super sensitive to the differences in wording.  Looking back, I almost feel sorry for the people that were caught off guard, and didn't know what to say.  They were trying to be polite.  But it was there.  The akwardness they felt, and them choosing their words carefully when seeing my baby for the first time.  But "It's ok", I wanted to say.  "It's ok that you don't know what to say, I go home every day and tell her how beautiful she is."  Yes, she is precious, and she's beautiful too!

Ashlynne with our friend Bailey, who is an
absolute beauty, inside and out
Of course my friends and family knew before they met her that her skin was going to be a little redder than most, and that she would have dry flakes of skin, and gobs of lotion on.  People were nice enough to let each other know, so they weren't caught off guard, and they were prepared.  But what was I supposed to do, put a sign on the front of her stroller to advertise to strangers before they approached?  To warn them of my child's visual difference?

It used to hurt so bad, cut deeper than they knew, to hear people tip toe around their words when asking about Ashlynne's skin disorder.  "JUST SAY IT!!", I wanted to scream.  Just ask why she's so red, ask why she has such dry skin, ask why she has little skin flakes on her clothes, ask about the lotion!!  It's not like I haven't noticed myself.  Sometimes I just wanted to yell at people and ask them to stop treating it like the giant elephant in the room.

I've heard it said before that the quick look aways hurt more than the stares, and the comments.  I had never thought about this, but once I did, I realized how true it was.  How hurtful it can be that people would rather look away and pretend she doesn't exist rather than just ask tactfully what she is afflicted with. I want to show her off to the world, because I am proud of her.

She was, and still is, my miracle baby.  When I look at Ashlynne, or any other child with Ichthyosis, or any other visual difference for that matter, there is nothing to me that is more beautiful.  Some of them are lucky to be alive.  They are fighters.  She came into this world fighting.  First, fighting for her life, and now fighting for a "normal" life.  And they have now taught their mommies and daddies, and siblings to be fighters as well.  And so much of their beauty lies in how much they are teaching those of us around them.  They are teaching us patience, acceptance, and understanding.  They are teaching us to look deep inside ourselves and reevaluate what we thought was important.  They are teaching to really, REALLY look at what it means to be beautiful.  They are true INSPIRATIONS!!

My goofy, funny, beautiful, precious daughter
My daughter has a shock of golden blonde curls, and strikingly blue eyes, and lips that are oh so kissable.  But these are just her physical features that make her beautiful.  She has compassion, a sharp sense of humor, she is a good sister, and a great friend (just ask her best friend).  She loves babies, and animals, and sports.  She likes to pull pranks, and tag me in silly Facebook posts, and fight with me about clothes.  She likes to do chores to earn money, and she has started to love cooking.  She is patient, and loving, and FUNNY!  And all of this, is beautiful to me, and to many others that have been blessed to know her, or any other special needs child.  Special needs kids tend to look at the world in a different light.  The slower pace of life helps the people closest to them "stop and smell the roses".  To me that is beautiful AND precious.  So I no longer choose to take offense to the careful wordage people have used.  You're right, she is precious, and so many other things.

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