Zoo class

It was a gloomy day today, however our drive to the zoo was fun. Sleep and Jillian have not been friends lately so she and I were both rather tired this morning (like Wednesday night she did not fall asleep til 11, up from 3-4:15 and then up for the day at 6:30). We decided we needed a fun drive so we blasted Disney music and had a sing along.  
Today we went to zoo class! One of Jillian's favorite things is to go to zoo class. Today was her first 3 year old zoo class which is a little longer then the 2 year old class. The class was about snakes and chameleons.  I like how zoo class has so many different activities to do and lots of crafts. After the classroom part today we all went back to the fish building and got to go behind the scenes and go upstairs above the the fish tanks and see a snake. It was pretty cool. Yeah for zoo class!
During project time one little girl asked her mom why Jillian had her oxygen on her face. The mom did a great job handling it and told her that it is just something that some kids need. To a 3 year that is a very appropriate answer and the little girl went on doing her project. The mom turned to me and apologized. I told her not to worry about it at all. We then joked around times our kids have said things to people that have made us want to crawl under a table. 
Jilli and I were leaving the fish building (they dismissed the class in the fish building) and walking to see the elephants before we left the zoo. There was a guy there with whom I assume is his granddaughter. He was off to the side of the walk way and Jilli and I walked past them (Jilli was in her stroller) and after we got a few feet past them the man yelled to me "Whats on your kids face?" I was a little taken aback. It took me a few seconds to respond that it is oxygen. He then walked quickly to catch up to me and said "she is going to be alright though right?" "Yeah?" I then talked to Jilli and walked to the elephants...
I walked away from that experience scratching my head. I am not sure where yelling to me what is on my kids face is appropriate. I also really don't know what to say when people ask if she is going to be alright. 1. because that question most of the time is not about her and not about me... it is about that person trying to feel better about a child with medical needs. They need to feel ok with it. They can't handle the thought of a sick kid so their way of handling it is to just assure themselves that nothing bad is going to happen. 2. I have no way of knowing what the future holds, especially Jillian's. I know I am going to fight hard for her and love her but there is nothing that says what tomorrow is going to be like. I have watched my child turn blue multiple times. I have handed her over to go into surgery 6 times. What is your definition of alright? Some people want to know if she will be cured, some what to know if she will get rid of the oxygen, some want to know if she is going to die... and sorry but it is rather hard for me to stand in the zoo having a conversation with at total stranger about if my child is going to die young. Would you want to be asked that?
This is not to say that I mind questions about Jillian... not at all. I would rather people ask kind questions then stare. Honestly I am so use to stares at this point because it happens every time we go out, and really 99% of the time they don't bother me because I know people are just curious (the 1% that does is when people give her a nasty look when they stare). I am fine with people asking me her name, how old she is, or even why she needs oxygen and a feeding tube... if it is done kindly.  I am more likely to engage in the conversation if the first thing someone asks me is not about her medical equipment but instead something you would ask any parent, but as long as a person is polite, I am willing to have a conversation with them. Sometimes that conversation will be short because honestly I am human too and have hard days, sometimes I'm tired and sometimes after a rough doctors appointment my mind is worn out, but if a person is kind I will put as much effort as I can into the conversation. 
So if you run into us in public, feel free to ask questions. Jilli happens to be one of my favorite subjects in the world :) and it means a lot to me when people stop to ask us how she is doing and they are genuinely asking because they care about her and us and they are accepting that sometimes not everything in this journey is rainbows and sunshine (I bet you have things in your life that are not too) but if I can ask one thing... please be respectful, think of how you would want someone talking to you about your child.

Painting her chameleon. She already had to hang it up in her play area

She made a snake out of clay and put beads on it for scales

Making her chameleon costume

She was very happy with how it turned out!

My cute little chameleon!

She got to have a snake painted on her arm!

She works so hard on craft projects!

Upstairs in the fish building at the Milwaukee zoo... while a zoo keeper tells us about a snake... Jilli wanted to touch the snake, but they said no, I was more then ok with that! Snakes are not my thing!

She had to dress up tonight for daddy and show him all of her art projects from zoo class