She Smiled Away But She Wasn't Okay....But Smiled Away Because She Could

  Pain , seizures, a fall, Botox because of Dystonia and somehow there's a happy place?

 Smiling, laughing why???

I quite frankly don't know.

A car ride? No.

I like the doctor..... and he knows who Robert Liston was.

That's cooler than cool.

Yes, perhaps that's a lot of it.

My cousins did visit me before they left.

Plenty of reasons to smile really.

And when I finally came home gifts from friends were waiting in the mail.

Seriously there are things that lessen pain, and joy is something intoxicating.

Mere Dreams

 

  Oh how I miss the cabin in Virginia that is no longer mine.

It was a mere dream to live there.

No phone reception, no computer and no television.

Simple ,  and thoughts are not easily interrupted.

But it was just a dream, it was fleeting.

Like my parents marriage, my ability to walk and see....and so many other things, they drifted away.

And my life is drifting.

Seizures here, seizures there, and everything is mixed up good.

This I do not enjoy.

I will hopefully wake up someday and it will be over...no more drifting.

Until then I will be rolling onwards.

Going Green?

  So I was having some issues with my old wheelchair, it was moulded to my shape years past and I weighed about twice what I do now.

It took over a year to get it and I used it for years but my scoliosis is worse and it was hard to stand sitting in there very long....and it didn't fit in the car.

I took a risk, I found this tilt green padded chair for kids from China on Amazon...the chair is nearly perfect, my torso is a little short.

It's a 14" chair and just fine, it has breaks at the handles and breaks for me.

This is going to be hard for you to believe possibly but I went slightly crazy and popped a wheelie and dented the anti tip wheel place a bit.

This is my favorite wheelchair I ever had!

I was sad I couldn't get pink but hey, colors are not everything.

Also there's something people need to understand, if I am laying in bed and you visit me, sitting in my wheelchair is not appropriate. I had someone damage one of my chairs and they laughed about it, it's seriously my legs. Don't break them.

If you want to sit on my chair I can tell you the weight limit and you better not lie, this is no game.

Yup that's about it.

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