Tube Holes

While doing some online Christmas shopping, I came across this.  Cue me crying while people stare awkwardly (that seems to be happening more and more lately but, whatevs). Anyway, clothes with abdominal openings?! I liked target before, but now I want to take it behind the middle school and get it pregnant!
I had to cut a hole in almost everything Emmeline wore (especially her blanket sleepers) for years to accommodate her g-tube. I cut and I cried. At the time it was just another thing in a long line of things that I never imagined doing as a mother, and it sucked.
Why couldn't clothes exist with these openings already in them? Because it was weird and people weren't talking about it. Thankfully companies like Target now have these options available. And I think that's pretty awesome.
I even put her sliced up PJs in the quilt I made with her baby clothes. Because even though it sucked, it happened, and if I pretend it didn't exists then so will everyone else. Then people really won't understand how I got this way ;)

I Refuse

Today, I was asked to take Emmeline and leave a public location.  Why? Because her crying was bothering people. I was speechless. Well, honestly there was quite a bit of speech happening in my head, but it's probably best that it didn't come out at that moment.

The short answer? No.

The longer answer? I refuse.

I refuse to make my daughter feel more excluded merely so you can feel more comfortable.  She already has such a struggle processing her surrounding and doing her best to function "normally" that I will not let you make her think she isn't allowed to be out, when out becomes difficult to manage.

I refuse to let you edit the world into something it isn't. Disabilities exists. That doesn't mean people have to be alone. Instead of asking "why is that person making so much noise and bothering me?" maybe you should ask "why is that person making so much noise, I hope they are ok. Can I help?"

I refuse to let you make being out of the house something we can only do when life is good. There were literally years where the only place we went was the doctor. Part of this was due to illness and part was because I felt like we would bother people, be an inconvenience. I cringed at the looks and was exhausted by all the "I'm so sorry"s I would end up saying. Then I said, screw it! My daughter has just as much right to be here as you, and if you don't like it, you can leave!

I refuse to let you feel like you're that important. Seriously, who the heck do you think you are? Why do you have more rights to this location than my daughter? We are all people. Equal people. In the words of Kevin Malone "back off me".

I refuse to let you think my daughter isn't important. See above.

I refuse to let you shame an involuntary behavior.  Do you think my daughter is doing this for kicks? That she gets some sort of thrill from a total loss of control of her emotions (and sometimes body) while everyone stares at her? She doesn't.

I refuse to let you feed ignorance.  Let's say someone sees you make this request, thinks it's normal and then they think "yeah, that is annoying, and they should leave!" Not today satan.

And finally (even though I could really go on and on with this) I refuse to let you continue being a dick. Dick.