Camp G.L.O.W. and a Glimpse Into Last Summer's Projects

  Last summer I was very thankful to attend camp G.L.O.W via the internet, it is a Catholic camp for people who have disabilities and it stands for God Loves Our World, I really wanted to make some friends but this is something of a challenge online but I consider them friends.

I wore the same wool environmentally friendly dress 100 days for a challenge in sustainable fashion, it was extremely easy as for many years of my life I didn't have a full closet, I received a red reward dress in the end. I wear children's size clothes so I was wondering if I could even do the challenge but they make my size from Wool&, if you want to see my reviews on the kids dresses I have they are posted.

I worked with the Love One Another Project creating stickers and I made really cool donation jars for Patch Adams, I was in some newspapers and spoke to a school class online.

My eyes are not working like they did, I have more issues breathing and a lot of seizures but hooray for my Mom who literally saves me from slipping into seizure land forever.

Say What Happened To That Compassionate Doctor?

  Well he helped me out with a lot of things that I needed including a VNS and IVIG but something bad happened, while I was there getting my IVIG....Men with guns, the DEA raided and he eventually had a different practice but it cannot work for me because I'm on government healthcare and it's not really covered in that state...not to mention I get nervous there, but I like him fine!

I have had other Neurologists but currently I don't, my previous one left and one in between was very knowledgeable and found out more about me but nothing he could treat, I think he was quite elderly....I don't know if he's working still.

When it comes down to it I take my meds via feeding tube and the VNS probably needs new batteries however last time I was in hospital it was a 25 pound weight gain before they would do surgery, they don't think I will wake up. I just don't know how that would happen. There is a reason I have a feeding tube.

Hey but here I am alive.

What Makes Life Fair?

  Something that I often feel awkward about is being around people who think things are not fair and they are over the age of 10. 

It's really weird for me to hear a person who is a grandfather say something isn't fair, seriously I can remember saying that something wasn't fair one time in their presence as a child and they said life isn't fair and never let me hear those words come out of your mouth again or your gonna get it.

I don't get it. My own body rebels against me but everyone unless you die tragically pretty much faces their own body degrading and I honestly just try to adapt.

There is no reason I deserve it any less than you.

Here is what I think , we are not entitled to a good job or a body that works.

We are not entitled to own a house. We do our best and make do... whatever the circumstances are.

I personally don't have a job or own a house, have a husband or legs that work.

I do believe with all my heart that we are supposed to make the world a better place, handing out stickers, trying to help Patch Adams get money for his free clinic.

Writing to someone in an institution because I might be the only one who sends color in their world.

Learning Braille so I can keep reading.

Starting a petition for American Girl books to be available in Braille because only the original one's are and I want to read all of them!

Treating each other kindly and with respect doesn't always mean I will get respect and kindness but guess what?  You just have to be nice. 

Maybe that's not fair but you should be able to rise above.

But we all fall down we just need to get up.

.https://www.change.org/p/parents-disability-rights-activists-mattel-let-s-make-american-girl-books-have-a-braille-option?recruiter=765277459&recruited_by_id=ffa646a0-8775-11e7-80aa-3d1614ac0231&utm_source=share_petition&utm_medium=copylink&utm_campaign=petition_dashboard