The Fair

 Went to the fair today... My dad, mom, brother and I.
Not much there compared to years before.
They changed the date far too early for an agricultural fair in this area.

A nice lady brought her horse out for me to pet.

I loved the goats, they were so curious of my chair, studying it ever so intently.

A billy goat that smelled far more pleasant than the one we once had pleaded me to scratch him between his horns. He rolled his eyes into his brown shiny head in delight.
I couldn't stay there forever though and as my mom pushed me away he climbed up his cage wishing he could follow me...maybe wishing that he could be mine.

I wish I could take care of a goat.

The cows were solemn rather forlorn looking creatures.
They were tied up in a barn...seeming to wonder why are we here?
They probably wonder why people were starring at them .....they were probably wondering what the meaning of it all was.

The plant identification booth had a drawing that I entered....they had a butterfly craft I did.

I ate some fries because there is a place there that is safe for me.

My brother got me a candy apple , it is in the fridge right now.

We went to a cooking show , I couldn't really hear it.

I sat on the end with some other people that had wheelchairs ( they don't go on those bleacher things)

I met a girl and she said she liked the fair some . I like the fair some too.

We smiled at each other. 

A family from church showed up there and the mom wacked my mom in the back of the leg with her umbrella . They laughed ( its a sort of joke you see)

Daddy talked to the Dad.

We went home.

Writing Addresses

 I have been writing addresses on cream colored envelopes with silver and gold pens.
 My sister is getting married.
I stuff the invitation and the photo in there.
Daddy sees I spelled a name wrong.
I squish a little e where it is supposed to go.
I am done for today ....I've done about 90 I think.

For People With Afos

https://www.facebook.com/groups/354348394646158/

The Afo Shoe Exchange is a group on face book that allows you to swap shoes that fit afos......I added my oddly sized leftover pairs ( since I have to get 2 pairs for only one).
Anyway..it is a closed group but they added me in just a few hours. It might be useful.

I hope somebody can use my shoes because that would mean that someone out there has feet like me!

Today was fine....

 I went to church , took a nap, finished a Nancy Drew book I was reading, Made a slip so I can finally wear a skirt that was slightly transparent and drove me nuts.( it was sort of like that poly blend stuff not all cotton like I like)

Oh yeah ..who would of guessed that Nancy Drew is distantly related to Bonnie Prince Charlie on her great-grandmothers side ? There are far too many ghost writers in that series...... It just feels like a different person wrote that one.

The middle strap on the  hyperbaric chamber came unhooked and popped off while I was inside and it scared me!!! It was o.k. though , Mommy fixed it.

Simple Dreams

 Dreams of my friends that are gone....
they feel so strong.

I wonder if I died but then I wake up.

My dog is staring deeply into my eyes.
 She moves her mouth like she's going to tell me something.
No words come out because she does not know English.

She knows.
The dreams are simple but they are deep.
I don't know if it's bad or good...but the dog knows and she stares.

She does not speak of such things and I have a feeling that maybe I should not either.

Dreams that maybe should stay between God , the dog, myself, and well..the blog.

Maybe.

Look

http://crasche.com/special-needs-children-adults-disabilities-protective-headgear-helmet
Cool idea but I don't think it will be as good as a helmet.

That Look Feels Like Vinegar In My Eyeball

 There is a person staring at me , a grown person.
 The stare doesn't bother me, the look does.
The person has a sort of sneer on his face.
He crumpled his nose.

All of a sudden I think he looks like a humanoid pug.
I smile.
He gets a stranger look and it slowly morphs back into a human.
He smiles back.

Smile away ..smile away.

You Want Me To Do What?

 My youngest sibling comes to me and says " You are the perfect person to be part of my project..O.K.?"  " O.k.," says me.

" You have to test my robotic wings."

I was worried.

" I don't want to jump off of anything....I won't do it," I told her.

 " Oh...don't worry about that, they are not for flying , they are for looks....You can do it"
"The worst that's going to happen is it will shock you..you will not die...you can do it," she said. ( she already shocked herself!)

It sound rather ...fishy

I don't think some shocking wing contraption is good.

I tattled...I guess, but....................seriously when your sibling wants to strap some shocking thing on you I think it's o.k. to tattle.

My Dad said shocking things are no good. I think he was worried too.
So that was the end after I told Daddy.

Sometimes I wonder how she comes up with such things.

Party In The I.v. Room and Other Happenings

 Today I had to see the doctor. I guess I'll be trying Lamictal .
After that I had i.v. , my friend the lady with the red bag was there and someone new............Mike.
 Mike saw my leg brace and he used to have one too, he had to have it for years but he doesn't need it now. That made me happy, he doesn't need it now...and sad, he had it for years.
Mike doesn't have a gallbladder either.
Mike eats similar foods as me.
He was very nice and told me a joke.
He wore my helmet some, and asked if it suited him ...I said maybe if it had a different colored flower on it. He said if it had cauliflower on it!!! I said I thought broccoli would suit him best , " Good, that's my favorite, said he".
We laughed and laughed.
One of the nurses said it sounded like a party in there . ( That's  because we made it one)

Mike doesn't have seizures.. he has cancer.


Afterwards Mommy took me to the store so I could get some new shoes, I needed some for fall and since I have to get 2 different sizes I thought I had better get them early before sizes sell out. Well we found one that fit the brace and one that fit the other foot but they were not the same style, I was disappointed.
Then later a person that worked there asked me if I found what I needed and I told her my tale of shoes and she and another lady found me what I needed!!
Hooray for Wal-Mart !!! When you need to buy two sizes without going broke it works.
Kids sizes always seem to have less selection , and when your in your 20s it can be rather frustrating.

Sunday I made it to church and had lunch with Grandpa!!
Afterwards rubber band man came!! He used to be a postman and he goes around shooting people with rubber bands and giving them rubber bands so they can spread the love. The first time I met him I was afraid of him because he shot rubber bands at me through the open can window when I was ten and I was setting in there waiting for my Dad  and rubber band man said to let him in!!!!! No way was I letting a strange rubber band shooting fellow into the car when my dad was in the store. It turned out he knew my dad. 

Last summer we became friends again at my cousins wedding.

Saturday my dad took me to a concert and Grandpa came.
I really enjoyed it , I had lots of seizures and that was not so good.
A man came up to my dad and told him that he really should give me some cannabis, that he didn't smoke it when he was a kid and that he really missed out and he had a friend that has seizures and it helped him. ( slightly surprising since it wasn't that kind of concert, or place ...I mean I think the place was even a tobacco free school zone!!)

Anyway I wish it was legal for everyone...............I wish.

Friends Can Be Found

 Yesterday Daddy took me to a jazz concert and then afterwards we went to eat at Dante's. The concert was wonderful but so was what happened after dinner.

My Dad was taking to two young  guys and I had a seizure ( They happen a lot in the evening) The two guys got silent and starred at me ( so I am told) . Daddy said I wasn't really o.k. but that it was my normal, the guys then told Daddy that their Mom has epilepsy and the rough times she went through.

The guys understood......my life.

Later Daddy went to get me some juice and I stayed and talked to the guys.
 The one guy said that he wished there was some sort of technology to fix all my problems and then he said if only we could rid you of those God d@$%^# f#$%^&* seizures!

Well you know what? I rather liked those cuss words. ( I smiled)

Those guys told me I wasn't alone in what I was going through and that they did not believe in social barriers.

One day , they said, I shall kick epilepsy's d@%^#8 @$$.

They got silent when Daddy came back, probably because they were saying bad words, but somehow that didn't bother me at all.
I like those guys.

Daddy Might Take Me Someplace

 I am feeling better so Daddy might take me someplace.
Someplace with music!!
I think Jazz.

You Know That Feeling....

When you have to go somewhere and you don't want too....
when you get there you start to secretly make plans to hide somewhere,
like under a table or in a cleaning closet???

Maybe you are one of those people that crawl underneath oil tanks.

I felt like that about i.v. Monday....but you know I can't hide.
 1# I am not left alone
2# There are no tables or oil tanks
3# nurses always are grabbing stuff out of the closet
4# I was being ridiculous.
 
I went there, got my i.v., fell asleep , woke up, got socialized.
I had a fever and a sore throat( It makes me anti-social)

I am better now and had a good day and got a nap.

I drew some and got extremely sleepy.

Oh ...my sister that's getting married came home yesterday evening and she gave me presents.
A hello kitty change purse , hello kitty buttons, a little panda dude and today she gave me necklace. I missed her a lot. What shall I do if she ever moves away?

Colored Pencils And The Radio

 I sit on the foam mat next to my bed.

I sit there drawing flowers.

I am listening to the radio at the same time.

This American Life.

Next comes Ted Talks.

I like Ted Talks.

Then news.

I don't really like the news.

I hate it almost.

I like colored pencils.

I like my paper.

I like the radio.

I like the shows on Saturday.

That's all.

A Calender Hangs In My Room... ( I wrote this like a month ago)

 It is filled with numbers.

The numbers are not the days.

The numbers are the seizures.

Daddy sneaks in and looks at those numbers,

They make him sad......and somehow that makes everything seem worse.

The thing about those numbers though....the count is sometimes lost.

The thing about that calendar is it came from p.t.

It is not all bad....good thing are on there too.

My sister will get married.

Daddy took me to Dante's a few times.  

I am sure more dates will go on there,
But at the end of the day there are still those numbers.


If those numbers would go away for just one day what would I do?
I would run into the deep woods and roll in the ferns because I miss the green smell they have.
 I would ride my dusty bike.
Maybe I would go swimming .
 If it was winter I would be outside skiing all day.
Maybe I would stand on the cliffs of Backbone Mountain.

But not today. I did not even go to church.

Those Days...

 When you mostly draw and play with the Etch-a Sketch.

 And can't really concentrate on a book.

 You are mad because you've got a nasty sore throat.

 You get even madder because you don't want anything to eat but you've got to anyway.

 Perhaps it is not really anger but frustration.... perhaps .

Lamictal??

 Will I be given that also? What will happen to me next?

What will the white coated person say?

Will it be a step forward or will I go tumbling tumbling tumbling down a hill.

Will I fall off the cliff at the bottom or.......shall it be a savior.




Sometimes I want to shed my body and run away from it and not worry about stuff anymore.

 Run away in the woods and climb trees.

I would run far, far away into the sea and swim for thousands of miles.

On the other side I would go in a pub and drink some beer..because I could.....
.......but I couldn't.. you can't do stuff if you don't have a body.

I would want to drive away too because I could, but that requires a body too.
 Before someone gets worried...trust me I am only metaphorically speaking.

Yesterday And A Bunch Of Thoughts...

 Yesterday was i.v. and a doctors appointment, a long ride home and a nap.

Later Daddy took me in the hot tub!!!!!! I asked him a long long time ago and he worked on it, and I finally got to go in there. I trust him to keep me from drowning though I must freak him out somewhat because he won't stay in there too long. That's o.k.


I am not sure if I am going to enter my crafts in the fair this year. I just really don't like how early it is in the year now and you HAVE to pick up your stuff before 1:00 p.m. on a Sunday. Saturday evening was much easier because if you win any prize money thats when they have the checks ready, why did they change it? I just don't know.

Sibling stuff going on , and my parents sometimes don't know what to do about it.
I guess they will calm down? I am told it's all because of horrormones.

I found out fireworks are as bad for me as I have been told.

That's all for now folks.

Finished Pants Quilt !!

So today I managed to go to church and ......I finally finished the quilt I was making from old pants. I also made a pillow yesterday from the extra bits.

So...I made it through the reunion!

 Yesterday we heard some music and ate dinner together.
The day before that I went to a parade and ate lunch,then I went home and took a nap.
The day before that my friend came to the reunion to play some music, also his family came and they are my friends too!! I was very happy. Here are some pictures of that day........

I did not see the fireworks but I got a phone call from someone I have not seen in a long long time, that is much better than fireworks. Fireworks are not really good for me, I have been told.

I has been great seeing everyone and I am glad I got to do what I did.

New Glasses, Family Reunion, And The Reason Why I Don't Sleep Very Well....

 My new glasses came yesterday and I am glad..my left eye was far blurrier than I thought, now it is so much better. The eye doctor really should of left the right side alone however, I am deciding whether to send the glasses back or not.

I got to go to the reunion yesterday and I fell asleep, I guess I was having seizures . No wonder why I get so exhausted. They get me while I sleep too. I 'm not going to talk about it anymore right now.

The reunion is days not just a day I have missed a day but was glad I went yesterday. My youngest cousin is super tall like six feet !!!!! I feel even smaller now. We talked about true love and stories that really ought to be on This American Life, school and what alternative school is like ( prison basically), and how I was....all I say is o.k.

Sometimes I am not o.k. but I lie.

Oh yes, I am planning to enter the Easter Seals art contest.

Ralphie Is The Best

 Yesterday was i.v. as is every Monday. But what makes it so much better is the first Monday of every month Ralphie gets an i.v. too, I mean not that he has to get an i.v. ...that is sad, I mean that I love getting to see him.

He wanted to see my sketchbook and I finally remembered to bring it this time.

I gave him a drawing and wrote " To: Ralphie, you are the best!"

We tease each other and laugh and be silly. The i.v. room suddenly is not so boring anymore ..in fact it nearly is a party in there.

Also I am excited because he said he will probably come and see me sometime!