Feeling Lost

 

    

  So quite a bit of my life has been spent, lost in seizure land or perhaps Never Neverland... and I wake up and realize that everything has gone onwards, I go onwards in my own way but it is definitely not the same.

  People grew up and have children now and I begin to wonder if this is how Peter Pan felt looking into Wendy's window only to find she had a daughter of her own, that Wendy grew up.

  Some of my most recent adventures are stories in my own mind as I lay upon my bed, grand adventures of discovering a zydeco music in the middle of the forest with long lost cousins and rowboating to an island where you need not speak but simply look into the eyes of those who live there and if you are strong enough you will hear their stories.

 Lands of swirling sticky bright colors like a melted lolly that twinkle like a wind chime.

Lands where I must travel to alone....I meet strangers.

I am a time traveler and I can go forwards and it's very exhausting....but I don't very much know what to do about the lands my mind brought me to.... and when I come back, this world is so dark and blurry I am really quite honestly out of sorts.

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

 As I learn To Read Braille...

As I learn to read braille I think about all those colors my book mentioned, had I been born blind I would find those sentences really boring. I can see fuzzy colors, and I know colors but if I didn't ,well I think about all the ways a writer could describe colors using other senses, I think blue smells of a spring day...or perhaps it feels of a jump in a cold lake, the morning before the sunrise. Dark green could be like fresh spinach ( yes I remember what that tastes like), the smell of a fern or a mossy forest.

I figure you're probably lost with the time lapsed between blogs, well.... my parents are divorced, the mill closed, my brother is married, I have nephews. 

For environmental awareness and as a challenge I wore the same grey children's dress from Wool& for 100 days this summer.... It was easy because I am mostly a dress girl.

I attended Camp G.L.O.W. this summer via Zoom which is a Catholic camp for people with disabilities... I wanted to go in person but that wasn't an option. 

I got involved with The Love One Another Project and helped with sticker art, also spoke through the internet to a school class and ended up in the Newspaper... 2 different times actually.... 

Tried to get donations for Patch Adams, yes much has happened.

So I made a lot of friends through the dress challenge and the stickers...

You probably wonder about my health, well it's not the same...but everyday is a new one.

I never know what tomorrow brings but you don't either. So no matter what happens we gotta just keep on rolling onwards .

When I Am Silent

When I am silent this does not mean I have nothing to say, it just means that sometimes it is really difficult to say the words in me  or that sometimes with all my meds it feels like my head is full of sealing wax and  duct tape and a buch of brightly colored yarn and by the time all these things start to unravel from me it is time to be drugged again. What am I to say??? I say nothing for everything is stuck in this strange reality. and when I have come away from being a drugged I feel myself falling backwards into seizureland and I must admit this strange feeling that I shall not come back is rather annoying. I don't want to go away right now.

How Mommy Found Me A Compassionate Doctor Who Would Hear My Cry...

 Neruologists can be a very frightening bunch and even though some just said I was too much for them to take on, it was not helpful and things only got worse....but then it actually finally got to the point that some mean and rude doctors knew that I wasn't a fake...I have been called that before.
 I believe that they just didn't know how to treat a case as mine so they probably decided to just let things go even if taking no action was worse.
So where did my mother find this most compassionate person who works hard and cares for his patients?? The good old phone book.

This is not to say that I have not found great men who treated me kindly at hospital and a Muslim man granted me great kindness and mercy before, I cannot judge a man because of religion for we all are sinners and all have bad days... I just wanted the grown up world to be the way my mind thought it would be and it leaves me disturbed... But that's how sin is.
I still have much to learn and I am not saying that I thought Christians were better than anyone else is in their own human ways. I just guess I truly am stupid to of ever thought people were kinder to each other.