My Ruffled Feathers

I need to talk very frankly right now.  If I wind up hurting someone’s feelings I’m sorry.  I share intimate details about my family with whoever wants to hear which leads way for offhanded comments.  A lot of the time I can shrug them off.  Today, however, that just isn’t the case.

I remember the first time I met Marie.  She was 7.  It was my turn to watch the kids upstairs during Care Group (like a Bible study).  She was loud, obnoxious and she had control over the entire room by singing loudly and rocking in her rocking chair.  She didn’t care to quiet down even when I asked her nicely and sweetly.  Oh boy!  I was finally able to entice her and all the other kids with a book.  And then Marie, with her hair in a fro from a long day of school and play, was in my lap and in my face.  It was so, so awkward for me!  She was way too big for my lap but in her mind it was the best spot.  I did finally ask – actually demand – that she sit on the floor so I could see the book. I really love this memory and I hold on to it.  It’s the memory of our first connection.  She felt safe to throw herself into my lap.  It made me feel special, like she liked me.

I didn’t know she had down syndrome at the time.  I only knew there was something different about her.  At this point her dad (Mr. Sexy) made me nervous and I was embarrassed to ask what I thought was a silly and rude question: What’s wrong with her? (Okay, that sounds a little rude.)  I’m pretty sure someone even told me what she had but it was so … weird … to me that the name didn’t stick at all.

“She doesn’t look like she has down syndrome at all!” 
(This is not an exact quote from anybody in particular.)

Mr. Sexy and I get these comments all the time.  I didn’t realize why it ruffles my feathers just slightly until Mr. Sexy said it like this: I feel like it undermines our struggles. 

That may not be true.  It may be illogical.  It may not be fair.  But that is truly how it feels.  I struggle day in and day out with the fact that Marie has down syndrome.  She does things all the time that are not typical of the normal kids.  Her face twitches, she licks her lips so much they are constantly flaky and dry, she doesn’t speak well considering her age, she is generally slow and simple and she will eat herself sick.  I don’t say these things to be mean or diminish who she is in any regard.  I am simply calling it like I see it.  She has down syndrome.  These are some of the attributes that come with it.  And yeah, they are the negative ones.

All this to say: It doesn’t take much effort to realize there is something about Marie that is different from your neighbor kid next door.  It only takes a few minutes of talking to her or watching how she behaves or even by hearing me talk about her to see it.

It’s okay not to understand it.  It’s okay to ask about it – although I understand that would be scary especially if you don’t know the parents!  (I was afraid to talk to her dad about it at first.)

But someone telling us Marie doesn’t look like she has down syndrome ruffles my feathers.  That is basically saying they don’t know our family in the slightest.  And that’s okay too.  We don’t have to be friends with everybody.  But why broadcast that ignorance?

“My kid does that all the time!” 
(This is not an exact quote from anybody in particular.)

Again, I hear this A LOT.  And I get it.  People want to relate.  I’ve done this too!  We want to have something to say.  We want to try to encourage or make light of a situation.

But again, hearing this statement rubs me wrong and usually I can brush it off.  But today I’m having a difficult time doing so.

I think Mr. Sexy still says it best: I feel like it undermines our struggles.

This may be wrong, irrational, unfair and you may not understand it.  But I have to be brutally honest today.  I HAVE TO BE.

I classify many of Marie’s behaviors as weird.  Marie does weird things.

When your kid is three and learning about play dough she has to eat it.  It’s a right of passage.  She may nibble on it for years to come.  But there comes a point when she realizes it’s too salty and it’s not meant to be eaten.  So she stops.  Well, Marie doesn’t stop.  So while your kid can make the connection that it’s time to grow up a little, my kid can’t make that connection so she turns into a teenager doing things your kid has forgotten they ever did!

Marie wets her bed.  She is 12.
Marie at a bandaid today.  She is 12.
Marie at a tube of Chapstick, Neosporin and diaper cream on Sunday.  She is 12.
The day before that she shared a carton of ice cream with our dog.  She is 12.

I have a huge list of weird things Marie has done or eaten.  I don’t think my list would bore you either.  But for the sake of time, let’s move on.

Every time she does something weird it hurts.

I want better for her but have no idea how to make that happen.

My hurt quickly spirals into anger.

That anger results in broken relationship.

So as I continue to share the deep struggles I have with my daughter I will be working to grow a tougher skin.  It’s just that today is not that day.  Today I’m weak from the exhaustion of the fight against down syndrome.  I do fight it.  I want to erase it.  Ignore it.  Squeeze it out of her.

But I can’t.  I know this truth in my head.

Emotionally, however, I’m still choosing to fight a fight I won’t ever win.

How lame is that?!

Disclaimer: I know that nobody has intended to ever hurt me or my family with comments.

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