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.

Every Time

I kept Isa home from school today.

At 6:00am just after my alarm went off I got a txt from her school telling me that threats had been made against students at the school but "not to worry. Yeah, no. At first I was worried that I was just freaking out for no reason.  That I was being "that" parent.  But you know what? I didn't care.

I remember so vividly, being in high school, attending my classes like normal, and finding out that across the country a massacre was taking place at a high school just like mine. Columbine High School.  For hours we learned of the terrors that were/had happened.  It seemed to take forever.  There was no social media, kids didn't have cell phones, there were no school procedures for this. For hours we didn't know what was going on. Just that people were dead and dying.  Kids my age. Just like me. We could see bodies, blood, people crying and running literally for their lives. I'm sure everyone my age remembers that day. It hits hard.

It changed everything. We all saw the world differently. With a layer of suspicion and fear. I remember there were a couple boys in my grade. Boys who wore trench coats. People started whispering about them. Were they going to come to school and shoot us? They were excluded and treated like freaks. Ironically, that treatment is the excuse those other boys used for their massacre. We were all afraid. Grasping for some kind of logic and Some way that it could be prevented.

As the years go on, violence at school becomes more and more common. Several of Isa's friends played it off like it was no big deal. Like that could never happen here. They joked, teased and dismissed. Well, I've got news for you. NO ONE thinks it will actually happen to them or someone they know. But it does. So many families have lost children, husbands, wives, fathers, mothers, aunts, uncles... people. People were lost. Lives changed forever. IT DOES HAPPEN.

Regardless of the fact that no violence took place at her school today, I'm grateful that Isa's school takes any threat against a student or the school as a whole seriously. I'm even more grateful that they opted to send out that txt and email. I'm sure there are many families who would have loved the chance to get a warning. To have the chance to keep their loved ones home and away from danger. I'm so so grateful I had a choice, and I'd make the same one every time.