|Ashlynne with our friend Bailey, who is an|
absolute beauty, inside and out
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|