*Otherwise titled “The post in which I piss people off.”

From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley.  From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head.  From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up.  Every day, every night, every in between we are aware.  We notice when Angel runs out of steam before she’s played for ten minutes.  We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions.  In danger of a night of a screaming, pouting, angry Riley.

We notice it all.

We see it in the every day.

We see it in the little things.

Every action, every reaction.

It’s a part of our lives.  It is our every day.

Then you come along and say “But she looks just fine to me.”  Or “She doesn’t seem autistic.”  And of course the “She doesn’t act sick.”

I know you mean well.  Really, I do.

But I hate it when you say that.

It’s like you’re belittling our every day.

The hours at doctors and specialists.  The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours).  The hours a day hooked up to machines to live every day.  The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.

I know you don’t mean it this way.  I know you just mean to say that despite their troubles they look healthy and happy.  That unlike other children with special needs it’s not a visible/noticeable difference.

But I hate it.

Just say they’re beautiful.  Say they have a great smile. They look like they’re having a blast.

Don’t contradict what we KNOW.  Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).

It is our every day.

We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.

*~*

*This post is a re-post from a couple of years ago. It’s still very relevant to us today.