Monday, June 30, 2014

"Affected"... Aren't we all?

Reflecting back to the FIRST conference last week, one phrase keeps ringing through my head. In the Ichthyosis community, we often use the term "affected" to describe the person who actually has Ichthyosis.  I understand that this is the lesser of evils where other terms could be used, but it's something that really has me thinking.

Ashlynne's biggest protector, her best friend,
And her big little brother, Gavin 
I watched my 8 year old son at the conference this year very closely.  I noticed him laughing more, interacting more with others, and a general ease about him I don't normally see.  So in a rare moment that it was just him and I in the room, I asked him about it.  I asked if he had fun, and he gave me the standard "yes" that I normally get out of him, being that he is pretty easy to please.  When I dug deeper, he told me that it was really nice to not have to worry so much about Ashlynne.  That he didn't feel like he needed to protect her there.  There was a hotel full of people that looked similar to her, and he didn't have to worry about people staring at her.  I've always known that Gavin is immensely protective of Ashlynne, but I never realized that protectiveness affected him so much.

Which brings me to the point of the term "affected".  When I look at our life, and our day to day routine, whether it is Ashlynne, or the rest of our family, we are all "affected" by Ichthyosis.  No, Gavin, Logan, and Breckyn may not be the ones that have to apply gobs of aquaphor daily, but they also don't get to have the typical daily routine that other kids do.  When it's too hot for Ash to do something outside, such as go to the zoo, or play at the park, none of us go.  When we have to leave somewhere early to get the bath routine done, we all leave.  When we are out and about and people either, state, point, or whisper, it upsets them too.  The time that I spend helping with bath and lotions, and changing sheets and vacuuming her room and around her bed multiple times a week, is all time NOT spent with them.  Don't get me wrong, I am not complaining about any of this, I am just reflecting on the fact that in a sense, we are all "affected".  As I have said before, Ichthyosis isn't just a physical condition, it's also very much an emotional one as well.  So all of us in this little Ichthyosis family of ours are affected, even if we aren't the ones that have the affected gene.

By the way, when I asked Logan how he would feel about going to the next conference and meeting other people like Ashlynne, he said he would love that, because Ashlynne's awesome, and if they're like her, that means they are too.  Oh to see the world through the eyes of a child!!

2 comments:

  1. Exactly! That's how I have felt about "affected" for Ema and her brother, Matt, for years now.

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  2. The things you have explained these really make sense, I love this writing! Kids Ride Wild

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