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Harli



Last Updated: 7/12/2009

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Gender: Female
Age: 20
Sign: Gemini

State: Iowa
Country: US

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Sunday, July 12, 2009 

Current mood:  chipper
Category: Life
Well as you all know momma is not big on updating my myspace page anymore! hmmph*  but you can find me on FACEBOOK almost everyday :)
 


I have my own page~
Momma still 'types' for me most of the time, but what you may not know is that I am now DICTATING FOR REAL to her what to say :)
In February I was invited to participate in a Facilitated Communication Workshop here in Iowa...momma was quite skeptical too!
Facilitated Communication is EXTREMELY controversial and well, Momma likes to be cautious when it comes to me.
Well...guess what?~ I have proven that FC is not all hype and lies, I AM ACTUALLY communicating by using a typer called a Fusion Writer. I LUV IT!!
I type one letter at a time and when I am done I push the 'period' button and then it SPEAKS OUTLOUD all that I have typed.
I love having a voice!!!~
Momma had my staff lady, Trish, ask me 'What is the ONE thing you want new pple you meet to know about YOU"
and I responded with "Brain no broken but some curves in road"
I dont know why it almost made momma cry, but I thought it was important to tell the truth.
I now get to choose my own clothes and have gone shopping and picked out my OWN PURCHASES!!! It is sooooo freeing to be heard, to have a SAY!
I use a wipe-off board too, to make choices etc. It is very hard for me to type and can take me a long time, so I get frustrated and want to give up. The wipe-board really helps things move faster. I get to tell momma that I prefer Lemonade to tea, that I like bright colors and glitter on my clothes!! I even got to for the very first time ever, tell momma what I wanted for MY birthday!!~
I told her I wanted a BIG PURSE!~ and she took me shopping and I got to even pick it out :)  I got a big purple/black checked purse. My sissy & cousing Michelle got me lots of kewl stuff to keep inside it.
I even gave my cousin her very own nickname ..I call her PUNK. At first she was soooo annoyed that is all I would say to her ..hehehehe
but one day I explained that I was just messing with her and that I liked getting her riled up :) hehe
We are great friends now and she calls me 'Slinger', cuz I am always slingin her crap LOL*
My microboard is going amazingly and I now have 4 staff persons!!~ I even fired a weird woman last month!!  woohooooo..the power of being ME :)
I have my very own garden at Trish's house, and she lets me feed the horses there too. I really love the horses.
Lori, my other staff lady, she takes me to festivals & stuff. I get to meet lots of new pple, and we go fishing with her husband and sons. They even bought a golf cart this year so I can go golfing with them!!!~ I realllly get my giggle going when we ride across the green :)   Lori also got her training so she can take me swimming!!! You all know how much I LUV THE WATER!!~ WHOOOHOOOOOOOOOO ~
My new staff person, Melissa, reads my Harry Potter books to me, and we sit outside alot and enjoy the nice weather.
Then there is Chase!~ you all know him ..he was my prom date :)  He is now my overnite respite guy, he comes over after Home Health gets me all ready for bed and then he and I watch spooky movies together!!~ ooooohhhh I luv the spooky movies. He is taking me to the new Harry Potter movie on Tuesday nite...we are going to the MIDNITE release :) I am very excited!!!~
I am going to Orlando Florida the end of July to the Angelman Syndrome Conference. I will get to meet lots of pple from my fan club and momma says we get to go to Disney World too !!~
Well look for me on facebook~ sometimes I answer the posts myself, it is kinda kewl !~
til next time Angel Hugs & Smiles
Harli

 

Friday, January 30, 2009 

Current mood:  confused
Category: Life
Now as you all know I have moved to facebook, however they just don't have the option of me dictating a message to all my fans, worshippers & friends. There has been so many things happening here that I finally just sat my momma down and demanded she transcribe this bulletin!
My microboard is really moving along and it looks as though we have found some assistants for me that have half a brain! well that is what momma says...me on the other hand thinks someone should have a talk with them!
These ladies want me to do......*gulp*......MANUAL LABOR!!~  I know..I know...shocking!~ its just horrible. Apparently no one told them who I AM*hmmph*
First it was dusting the television while it was OFF!  then it was pushing the dang vacuum thingy across the rug *which I have now learned to turn OFF hehehe* and now...now.....I am being forced to do DISHES!! ME? *sigh*
Although once I got past the idea it was forced labor I found that I quite like the bubbles and splashing dishwater on my staff hehe. One time I even insisted on doing my sissy's dishes while I was at it...she was sooo excited and told me I was the best sister ever...of course she has no idea that I fully intend to use that little task against her one day ehhehe*
And then to make things worse the evil assistant ladies are trying to make ME do laundry? wtf? I am sooo not a maid! I am ROYALTY DANGIT!!
My puppy Obi is getting so big, his birthday is the 31st and he will be 2yrs old. Hard to believe he has been mine that long, also weird to think he wasn't always just here with me. I love watching t.v with him laying next to me, and I really love yanking his tail and smackin him on the head..it gets my giggle going hehehe.
 He is now at 98% accurate at picking up things that I drop and is bringing them to me instead of momma about 30% of the time now. He can catch his ball in the air now too!! My buddy Chase taught him that, its wicked kewl to see how high he can jump.
So while I have been busy being used against my will for strenuous hard labor my momma has been plotting more against me.
She was gone last weekend to some 'workshop' thing and I was here at home with my assistant have a grand ole time! I even broke the dustpan with my broom while sword fighting with my helper hehehe*
But the fun was soon over, momma came home and she was totin some big ole binder and a keyboard thing. I wasn't too interested in it....until it became painfully clear it had something to do with me! Oh yah there she was all set to rock my world into another dictatorship controlled by her!*hmmph*
This workshop thingy told her that I could communicate if I learned how to use this keyboard or words on a wipe off board....?? My question is WHO TOLD THEM??!!
So all week now she has been shoving that wipe off board in my face and insisting that I point at a word for what I want....like she doesnt KNOW what I want? geeesh. There I was minding my own business and innocently asking for my remote for the t.v, I pointed right at it, made my usual annoyed vocalization and that crazy woman IGNORED ME!!
She made me answer her with that silly board! Oooooo I was mad. I shoved that board right outta her hands and pointed at my remote again....but she didnt listen...she kept shoving that board at me....
I wanna know whose idea this board was and where do they live??!!!  I am gonna find out too, momma says I get to go with her to the next workshop...well they best be prepared cuz I am gonna do some communicating alright!! hehe
Well my days are otherwise full of adventures and good times. I have been painting with glitter glue, sorting marbles, writing encrypted messages on that wipe off board, going to the movies and hottie stalking at the mall
 
I will keep ya posted..but if you dont hear from me in a while.....SEND A RESCUE TEAM IN!!~
Until next time Angel Hugs & Smiles
Thursday, November 06, 2008 

Current mood:  cheerful
Category: Life

Well that darn momma of mine sure hasn't been keepin' ya'all up to date, & I know how much you have all missed the wonderful happenings & crazy antics of ME~

It's official..I AM all grown up now! Momma says I am a 'true-citizen' now too...what ever that means...but it seems to have something to do with all the fuss & celebration of Election Day!

Yesterday my godmother, Linda, met momma, sissy & me at a place called 'the polls', and these very excited ladies at a table were telling Momma I needed to fill out some papers first & then I could VOTE!

Well everyone at the polls were fabulous and very helpful! They wanted me to sign my name on something called an 'oath' so I gave them my best 'scribble' then the strangest thing happened...They asked ME to show them my photo ID!? uhh did they NOT know who I am? seriously!? geesh!

Well momma had it handy and all was set to go. So Linda & I were moved over to a table, out in the open, but back in the corner? Well I wasn't having any of that! My momma has spent the last month explaining to me HOW things were going to happen...

She told me that I was gonna get to go inside a booth with a curtain & after it was closed I could show Aunt Linda which candidate I wanted from the cards we brought along...(I had one with that white gray haired guy McCain on it, and one with that tall guy with a tan, Obama)...

I looked at Aunt Linda & she knew without words what I was sayin', so she spoke up and told them 'Hey. Harli isn't going to do this without her privacy' so they moved us into the now freed up 'handicap' booth (I have no clue what that means)  but they didn't pull the curtain, something about it wouldn't fit around me, my wheels & my godmother all together.

Hey my momma taught me well & I again REFUSED to do anything. I kept looking over my shoulder at those ladies at that table but they were just smiling at me. I guess they needed a 'sign' ehhe

So Aunt Linda again told them, 'she needs her privacy'...well finally they GOT IT & pulled that curtain as far as it would go over us & in less than 30 seconds I was grabbing a card outta Aunt Linda's hand & holding it up high!  

Yep..it seems even the Royal get to VOTE! Momma says its 'special' cuz we live in a country where even those of us who cannot speak still have a VOICE!

I won't tell her who I voted for, hehe, but she sure is proud of me... well I think she is~

After we got home she started watching that darn political stuff on the t.v again & when that tall dude with the tan started speaking momma got a bit teary eyed~ hmmm I don't know if she was happy or sad, but I know I am definitely NOT telling her now who I voted for!

I am so famous for Voting that people have been high-fiving me all day, momma's getting e-mails & phone calls to tell me 'way to go' & the American Association for Persons with Disabilities did a story on me! Yep~ you can read my story @ http://www.jfactivist.org/

Remember it doesn't matter if your Royalty like me, or just a commoner like momma, in America we ALL COUNT!

Wednesday, June 11, 2008 

Current mood:  blessed
Category: Life
Dang Momma has been slacking on the updates!! geesh!
As you all know I GRADUATED HIGHSCHOOL on the 18th of May!!!!! and it was AMAZING!!
First we needed someone to push me through the procession into the gym....I thought a nice horse-drawn chariot would be nice, but I guess you can't have horses in school *hmph*
And Momma just figured whomever was behind me would do it. 
Well the Superintendent/Principle likes us to walk about 15 feet from each other, so parents can get pictures, royalty like me can be properly greeted etc.....
Before Momma or I had a chance to even think about it the Superintendent/Principle tells us that he has already taken care of it!!
He asked DESTINI TO DO IT!!! and of course she agreed..I mean I am her big sister!!
*if you knew how painfully shy she is though you would be as shocked as momma was*  When he pulled her out of class to come to the commencement practice Momma asked her about it and She said 'well I couldn't tell him NO', he's the principle!! ahhahaha
So Graduation Day, there was Momma in her seat and both me and sissy are coming through the line.....I, of course, was in my gown (ya all knew I would never leave that hat on lol* seriously..why would I mess up my hair?)
Momma said that they reserved the 2 seats directly behind me so Destini wouldn't have to go looking for her and she could just sit down behind me and it would all seem much smoother to the onlookers. But I know it was cuz of my royal status and they wanted my family treated well.
The junior class members are Ushers and they wear suits and nice evening gowns....so one HOT dude in a suit, Jack, got to be my personal Man ahhaha
When my row was called to stand up this hunk of eye candy in a suit comes and gets me and he wheels me up the 'exit' side of the stage (where the principal dude has had them  place my portable ramp *no room on the other side*)
He then wheels me across the stage to the 'enter' side. We stop and turn around to wait..... When my name is called my buddy Trish (who graduated with me) came back up on stage and her Jack help me stand-up out of my wheelchair and then THEY helped me take the 3 steps to the podium where this other dude gave me my diploma, which I very excitedly SNATCHED UP!!!!
The entire gym of course, broke into applause and I squealed the loudest squeal ever :) *I think they all enjoyed that*
Once I sat back down Jack wheeled me back to my place in the seats.
I held that diploma book up in the air just giggled!!
Eventually I let momma take it, she said she was eager to see what this 'Certificate of Attendance' was going to look like (* if ya don't know that is what kids like me are suppose to get, since we can't compete academically*) wellshe about fell off her chair when she opened it to find a REAL DIPLOMA INSIDE!!!! JUST LIKE EVERYONE ELSES!!!!!
I have no idea why she was so surprised, afterall, my school does KNOW who I AM
But Momma just couldn't believe they did that for me.
Well the Superintendent/Principle dude came by later to my awesome party and when momma thanked him she asked him 'why' and he said "hey the day she entered kindergarten she began earning that just like everyone else"  Of course I know the REAL reason, he isn't about to tick off the royal masses hehe  
My party was fantastic, I had tons of pple, (over 90 signed the guest book) 
Even the Football Players came in groups, ... the Cheerleaders all made an appearance and took advantage of photo-ops.
I ate lots of cheesecake and Momma had Pink Champagne flowing although she refused to pass me any!! hmmph! it was MY party ya know
Of course everyone was asking me what I was going to do now, so I just pointed to my Candy Vending machine all filled up and on display... so of course people were dropping quarters in it (which was the idea hehe)
I got a list of everyone's favorites and everyone helped me brainstorm locations. I must say that the idea of forcing me to 'work' should NOT have been up for discussion, but I did enjoy seeing all those shiny quarters drop into MY machine  so perhaps there is something to this whole thing...
Momma made a dvd of me growing up and it played over and over all day ...but no one seemed to mind, afterall I am quite adorable
You can see it here ...
I am getting excited and ready for my niece who is coming to visit me Sunday...just in time for my 19th Birthday! whoohooo
Momma is gonna go get her from the Airport Sunday morning....sissy has been cleaning out the guest room for her. It is gonna be wicked kewl fun.
Well til next time..
Angel Hugs & Smiles
Tuesday, April 29, 2008 

Current mood:  bouncy
Category: Life
SO....As many of you know Saturday nite was my Senior Prom! and I had a BLAST!!! which is actually an understatement!!
First Two college friends of mine came home for the weekend just to do my hair and makeup!! My friends Ashley and Valorie came over with all the fixin's to make a Princess Crown Worthy....yep they even got EYE MAKE-UP on me!!!!! I was sooooo HOT
My escort, Chase, and his momma came over to my house for pictures then a bus with a lift picked us up and drove us like the royalty that I am to all of our destinations. It was soooo nice to NOT have to worry about my dress getting all messed up getting in & outta momma's car
First stop was pictures...the paparozzi was everywhere, people were screaming my name, pushing & shoving took place as my fans tried to get closer.....*well ok..not really..hehe but camera's were flashing all over the place & everyone was calling my name!*
I had pictures with Chase & then we had a Class Picture taken...we are one of the last big classes at our school.
Then it was off to the Grand March!! This is where everyone gets to walk the red carpet under the twinkling lights & pple are scurrying to get ur pic under the balloon arch...oh it was heaven...
I WALKED the red carpet at the Grand March!! I had my walker & my hottie date to help me out....oh you could have heard a pin drop during those few minutes (everyone is instructed to applaude for NO ONE as it takes up too much time....) well they obviously forgot who I am....cuz when we finally reached the Arch the entire gymnasium errupted in applause, whistles, cheers & camera's were flashing from everywhere!
It was sooo kewl, I really got my giggle going...
After that & many more photo ops, we were off to the dinner & dance...
Oh I danced the night away....lots of eye candy everywhere. People were dancing all around me, holding my hands, wheeling me about in and even making hand tunnels for us to roll under....Oh it was such a FANTASTIC night.
Momma hid in the shadows and took turns video taping and taking pictures...so be sure and check those out in my albums section...
We each got small autograph book keepsakes and my friend Sam wrote "Harli you look so beautiful 2nite, I hope you enjoy your evening"..................... How sweet is that?!! a True gentleman
After the prom, we headed over to my friend Trish's house to change for the AfterProm party......it was nice to take a break and get into more comfortable clothes....
Then before we knew it, it was time for the AfterProm Party....Lots of games and music there too...I really enjoyed watching classmates sing Karoake, play guitar hero and do that dance revolution game...it was hilarious!.
Some people were even swinging oranges around with their heads!! *they had a panty-hose over their faces and the leg part had an orange in it...they had to swing it with their heads...I have no clue why...but it was hilarious!!*
A characature artist was there and I got my pic drawn with my two best buds.....
Then the drawings started....they had 10 BIG prizes and only Seniors names got drawn...the first name got their pick of prize....well of course my name was drawn first & I brought home a 20 inch Flat Screen Television!!!!
Then in another drawing I won a chrome book shelf! *I gave that to my sissy 4 her room* and all the Senior's went home with $50....yep I really raked it in hehee
After the games and drawings we all headed for the other gymnasium to watch a Hypnotist...omg! was that hilarious ...I soooo got my giggle going big time..especially when he convinced my classmates they were rockstars!!!!! He even had one convinced he was Elvis...oh it was soooooo very funny :)
I had the best night ever !!!
I reallly like Prom & recommend it to everyone
Well momma says its time to plan my Graduation now....ooooo I am sooo excited..MORE PARTIES!! YESSSSSSS!!
Until Next Time Angel Hugs &  Smiles
Tuesday, April 15, 2008 

Current mood:  bouncy
Category: Life

Well it has been a very long winter here in Iowa and as much as I love vegging in front of my tele I have had about enough of the snow, freezing temps and that darn wind messing with my HAIR!! *hmmph*

Can you believe that on Saturday we woke up to a dusting of SNOW all over everything!!! *wth* is goin on anyways? What happened to all that  global warming? I tell ya its gotta be momma's fault for using those darn canvass shopping bags, and making sissy separate the plastic and newspapers....*sigh* why did she have to go all environmental on us and put those silly squiggly bulbs in all the fixtures? NOW the warming is all done and the freezing has returned!!!!! hmmph.

But alas...Sunday the sun peeked it head, the breezes lightened up and momma said there was an auction just around the corner..whooohooo I was going OUT!!!

We headed over and mingled with the neighbors and other town gossips, oh I mean 'town folk'  It seems a house behind us was up on the auction block along with all its contents. Momma didn't find much worth her time,but she did take a quick stroll through that little brick ranch to see if it were royalty worthy. *hmmmm, a house? for me?*

I really like the idea of having a party pad of my very own, and even though I heard momma tellin pple there was no way to get me down the hallways or into the bathrooms, I must have gotten all caught up in a daydream the minute I heard her say something about a BAR in the finished basement!!*total visions of hot dudes making me martini's took over my brain cells....I swear it wasn't my fault!!*

Before I knew it some guy was talking so fast over a loud speaker you couldn't understand him and it really kick started my giggle! So there I was giggling at this small town white boy tryin to rap about numbers and daydreamin about dudes serving me drinks while lounging all day in front of a big screen when all of a sudden that fast talking guy looked right at me and said "50? you go 50" well I had been watching long enough to know what to do so I raised my left arm up ever so slightly and put two fingers in the air!!

Well Momma 'bout had a heart attack right there, she grabbed my arm and was shaking her head at the guy, while pleading with me to sit still......what? he asked me not her?? heck...I thought a house of my own for 50 bucks was a nice idea but it seems he meant 50 thousand ahhahaha ooops

Lots of people sure got a kick outta me tryin though and told Momma it seems I wanted to move out! ahahah *I had no idea I was so obvious*

Well Momma has been busy getting things ready for upcoming graduation, my senior prom and she has even been interviewing me a new assistant....thats what I call em anyways..you know that person you hire who waits on you hand & foot, washes your hair for you, puts your shoes on for ya, let's you dictate the programming on the television.....ya that person 

I will let ya know how 'my' interviews go....Momma don't have the final say you know and I really only have one question....."WHOSE THE PRINCESS?" ..pretty simple don't ya think?

Tomorrow is suppose to be 50 degrees!!! so here's to warmer days, more sunshine, and ME

Until Next Time Angel Hugs & Smiles

Friday, April 04, 2008 

Current mood:  cheerful
Category: Life

Well as you can all see my Mom FINALLY got around to uploading the pics of my room. She actually did the work in 2003!! *sigh*geesh.

I got to pick the awesome color though...and if ya couldn’t tell I just LOVE pink! BRIGHT PINK to be exact  I think momma did a super job, well except for that darn ’window’ into her office...do you know she uses that to SPY on ME!!! *HMMPH* should be a law against that kind of thing ya know.

But I am glad to FINALLY share it with you.

Well Prom is coming up and I am soooo excited! I got my dress last week, and when Momma tried it on me...ohhhh I was soooooo suddenly FLIRTY!! I really like dressing up *of course I am a princess so it makes sense*

Momma has to do some altering to it, cuz its too long for me to walk in. Yep you read that right...I get to WALK the Grand March Ceremony! Momma and my date are gonna decorate up my walker to match and I get to walk to the Arch for pictures like everyone else!! *part of me wonders though if this is a sneaky way for mom to exploit me and force me to do physical exercise? hmmmmm*

Momma was gonna get me a limo to drive me to the event, but alas they were all booked up by the 15th of Feb!(prom isn’t til the 26th of April) But I am still very excited. I will get to dress all up fancy and my awesome friend Val is going to come do my hair. She said she was even gonna put some make-up on me!! I heard speak of glitter lotion too!! oooo I just love sparkly’s!

Don’t worry Momma is gonna get tons of pictures for me to share with you all.

And as many of you remember I GRADUATE this year!! WHOOHOOOOOO!!! NO MORE SCHOOL!!!! YESSSSSSSSSSSSSSSSS

*did that sound a bit toooo excited?* hehe

Momma has been very busy with that or so she says. I really haven’t seen any proof yet. But she says we are serving cheesecake and Pink Champagne  YUM! I love cheesecake..but what girl don’t ...really? lol*  and if the Champagne is PINK it has to be good! right!?

Momma is working with the school on figuring out a way to get me up on the stage, cuz I wanna walk across it like everyone else! It doesn’t have a ramp to get me up there and the school guy is being resistant on building me one...*sigh* I suppose he just doesn’t know who I am!!! But Momma is determined so I am sure we will find some pple to help make this happen  I told her that if we have to I will call in reinforcements! and I know they don’t wanna deal with my troops!

Well that’s all for today......

Until Next Time Angel Hugs & Smiles

Sunday, March 23, 2008 

Current mood:  adventurous
Category: Life

Well finally the parental got her computer back and I am anxious to dictate all the happenings in my world...really what other world is there?

I am not sure where we left off, its been such a long time...but I will begin with my recent taste of ’unschooling’!!

So it is the wee hours of the morning and the light is clicked on in my room *sigh* great..another day of being ripped from slumber, my clothes removed, thrown into the shower against my will and shipped off on a big yellow bus......but wait.....Momma is going on about a ROAD TRIP? HMM??

I eagerly eat my breakfast as I watch her pack my clothes into a duffle bag...oooooo this is soooo kewl! Maybe my friend Vicki has finally gotten thru to her? Or perhaps Joey has sent in the calvary to rescue me? ooooo maybe my friend Isaac is watching over me and has somehow tipped the Universe in my favor?

well it really doesn’t matter who is behind it....I am off on an ADVENTURE!

We load Margaret’s van (she is my chaueffer in case you don’t know) and then I am properly secured in my traveling throne, my sister, momma and of course Obi all pile in and off we go!!! I am so excited I can hardly contain myself.

We drive across the state of Iowa and into Illinois, and to my surprise we stop at my Uncle Mouse’s house! Momma is suppose to help him with his computer (which really confused me..I mean she let hers die.??)

I am very excited to be there, cuz my Aunt Missy is my most favorite aunt! My little cousin Dakota just cracks me up, he calls my dog ’feather’ cuz his tail looks like a feather to him hahaha

My cousin Jared and cousin Dustin showed me racing videos. They even gave me a Mugler Racing t-shirt! I hope momma lets me go watch them race this year. I just love really loud cars!

I had a super time watching momma and Uncle Mouse try to fix his puter..ehhehe they are such airbrains hehe

Then the next day we head out again...to travel the open road and see the world!! whooohoooo  Sissy even brought along all my favorite cd’s so we had the proper jams to carry is down the road.

We drove over roads that we were 5 lanes on one side! we even drove over something momma called a ’mixer’, it was wicked kewl! there were cars driving under us!!!

We stopped for ice cream in a place called Paducah Kentucky! We saw so many horses in the pastures and lots of high bluffs lining the roads.

Then we drove into Tennessee and WOW! the grass was green, there flowers blooming and the temperature was 73degrees!!! I was wishing momma had packed my swimsuit.

Oh Sissy was so excited when we drove past Nashville. There is a huge building there that looks just like BATMAN! no really it does!!! Momma says its the ’AT&T’ building but I know it was batman’s lair.

We stayed at a really nice palace, it had automatic doors and a guy dressed in a suit to greet me! Our room was amazing and I just loved the huge window!

I really like to look out at the city lights at night, so much that I actually surprised everyone by standing up out of my wheelchair and grabbing the sofa for balance just so I could see outside!!! They were all so excited, I think they are just silly. I am not lazy afterall, I’m merely a Princess and shouldn’t have to do anything that I don’t want....and well I WANTED to see out that window!

We were in Brentwood Tennessee for a microboard conference...what else? I mean it would have to be something that was ALL ABOUT ME afterall

My friend Lorre was there with her dog Sunshine, and I think Obi got his first crush. But it was pretty obvious he just wasn’t her type...poor guy. But it was great to see Lorre and Ross again.

I also saw my friend Carmine, he is HOT! I flirted a bit with him, but there was so much other eye candy in that hotel I just couldn’t keep up

Everymorning momma would take Obi out for his walk and that door man would be there greeting them leaving and coming! He even called Obi by name!

He always said "good morning Miss Harli, good morning Mr. Obsidian" he would say....it was sooo kewl. I think this guy must have gotten notice that I was royalty! I just wanted to stay forever!!!

A really kewl group of ladies took Sissy into Nashville one night and they walked the streets of the Music Capitol! Sissy said she saw street performers, super tall buildings and a place called ’Printer Alley’. She had a great time and said she wished I could have come with. what a great sissy

Eventually our week had to end and we packed up the van and headed back out. We found the most amazing place on the way home. Right there off the interstate was a beautiful 1800’s MANSION! they turned it into a ’rest area’ and so we stopped to check it out. Oooooo it was sooo awesome!

Momma took some pictures for me so I could show my friends Vicki and Joe my adventure. I think they wouldn’t mind living in this place! It doesn’t have wheels but you wouldn’t miss them

It even had a real wine cellar outside and the old stables and green house were still there too!! Momma says she would love to live in a house like this...and I agree!

It even had huge pillars on the front porch and stained glass windows. ahhhhh I am certain this house was built for a princess like me.

But like all good things this trip ended...*sigh* We got back to Iowa, the COLD and the darn snow! I had to go back to school and back to being yanked from my bed in the wee hours of the morning.  Only its my momma forcing me from bed now...it seems my prayers were finally answered and those evil home health ladies have disappeared! wooohoooo.

Momma says it cause the provider agency discontinued my services, whatever that means...all I know is THEY ARE GONE!!!!! eheh

Momma slipped a disc in her back and so I guess I have been a pain in her ...well you know hehe but I just giggle at her when she gimps across the room

My sissy gets the Sister of Year award. She has been so awesome. She gets me dressed, brings me a snack and she even volunteered to assist with my bath! What an amazing sister! I love when she gives me my shower, we have so much fun ....I  grab the shower head from her and get her all soak and wet! hehe It really gets my giggle going...and hers too. Momma says it sounds like we are having a party in there

We have been hanging out alot lately, she watches movies with me in my room at bedtime, she let’s me control the t.v in the living room, and she even picks out the kewlest clothes for me to wear to school.

well...I suppose I need to go eat my Easter dinner now...momma made ham and sweet pototoes..mmmmmm MY FAVORITE.. (well ok..all food is my favorite ehhe)

Oh btw...the Easter Bunny dude brought me CHOCOLATE! YESSSSSSSS!!!

Until Next Time Angel Hugs & Smiles

 

 

 

Tuesday, February 05, 2008 

Current mood:  adventurous
Category: Life

Ok....I so must tell you all about my most fantastic weekend! well I suppose the 'fantastic' part started early last week.....

Monday was a normal, freeze your buttocks off kinda Iowa day....then Tuesday the gods were FINALLY on my side...

I was forced from my bed chamber at the usual 6:30 am (or what I like to call 'the freaking hour of hell') and shoved into the shower like a rag doll.

Afterwhich I was being beautified (yes its possible for me to get more gorgeous) and I got a good glimpse out the window...omg! it was horrible out there! The wind was rocking the flag pole right outside my room, the tree's were swinging like monkey's and SNOW was falling from the sky...AGAIN!!!

I did my best to begin a protest but all that 'hollering' was mistaken for me being in a 'good mood' ? wtf?  Oh I ate my breakfast as slow as I possibly could, anxiously awaiting the guy on the radio to scream out those two wonderful words..."NO SCHOOL", BUT.....

alas he did NOT  and I was shoved into my coat like a burrito and pushed out into that horrific world of cold....as I am rising up on my pedestal (also referred to as a wheelchair lift) it suddenly begins to creak and slow down...hmmmmm...could the power of thought actually be manifesting itself before me?

The bus driver yanks me inside the bus and hits the switch for the lift to fold up, but all of a sudden the gauges all begin spazzing and bottoming out, the lights go dim and the lift hesitates.....I am doing my best to suppress my giggle!

The driver summons my mom from inside the warmth of the house...."what should I do?" she asks momma...( I put my head down so mom can't see the grin on my face ) and lo and behold momma says "well you can't risk getting stranded in this weather with miss Harli on board, so let's unload her now while we can. I will just keep her home today."

Home? did she say HOME TODAY?? heheh MUUAHHHAHHHHHAAA YESSSSSSSSSS

The sound of the floor straps retracting are music to my ears.. I AM FREE! I AM FREE! mom whisks me inside and there gleaming in the living room, awaiting my return is my throne! Yes my RECLINER!! woohoooo

My poor sissy though has to venture out into the freezing abyss while I stay all toasty and warm...so I begin to think of ways she too can join me in the glory of NO SCHOOL...

Well I must not have been thinking hard enough, after all I was a bit distracted by channel surfing and harrassing my dog! cuz poor sissy headed to school.....but eventually I got it right..they called off school a whole 2 hours early! (hey that's better than nothing) but by this time momma says visibility was minimal (whatever that means) and she was a bit worried about sissy's bus getting all the way back to town.

Hey, I was on a mission and I wouldn't leave my sister out in the cold, so she made it just fine, although I hear she is lucky she didn't lose an ear or something....she had to walk the 6 blocks from the bus stop home...

So there we were, all cozy with our favorite blankets, my remote control, my throne and NO SCHOOL....well we had such a good time, I was beginning to wish a repeat for Wed..... hehehe

I am getting really good at this...cuz that night momma got a phone call that my bus was STILL BROKEN!! ...somethin about a alternator, whatever that is...WHOOHOOOOO!! but I do feel bad for sissy....

So come Wed morning the wind is rocking the world once again, but this time the fresh snow is twirling with it....YES! but there was only a 2-hour delay, but at least sissy got to sleep in a bit  I of course spent another lovely day on my throne in front of my television

Well I figure I shouldn't push my luck and so I go to school on Thursday and Friday....Mom won't even let me skip class to go with her to get the strap on one of my AFO's fixed.. hmmph! but I don't care I have plans for next week already twirling in my head

Saturday momma and sissy are running around cleaning like its Spring already, it really confused me, I was getting excited....well until I looked outside!

But it turned out to be a great sign anyways...my friend all the way from Michigan was coming to see me!! My friend Jill (she has angelman syndrome too) was in Iowa to visit her brother and wanted to visit me too! YESSS LET THE PARTAAAY BEGIN!

Oh we had a blast! Jill brought me some super kewl balloons, and sissy was excited they even brought her a bottle of 'sparkling juice'

We had a wicked kewl time, Jill is sooooo comical! She walks really good (I guess no one told her to 'pretend' she couldn't...and I didn't get 2 seconds alone with her) but..she can also DANCE!! oh she was amazing! Her and my momma were dancing around like silly-butts.

I got my giggle going and forgot to pretend to be bashful! hmmmph. oh well. I really liked Jill's mom too, she was so fun! She sat down and was talking to me, she even bopped my balloons around a bit with me. I suppose she knew I was royalty and she needed to give me some proper attention too

We had supper together, and I was thrilled we had company, cuz momma made home-made mac-n-cheese (which I rarely get due to something called a 'diet'...sounds like a cuss word doesn't it?) ooooo it was yummy!

My friend Jill caught on quick to how things work around here and she had my momma waiting on her in no time! I bet she had her water glassed filled a dozen times during dinner hehehe She just kept telling mom to do it and mom would get right up and take care of it  it is sooo awesome being royalty!

After supper my sissy pushed me up to the piano and we 'played' a song together. Then sissy got out some of my musical toys and some books. Jill and I sat in the living room investigating the entire box of fun for hours!

It was the bestest time...and eventually they had to go,I was a bit disappointed and kept grabbing Jill's mom and trying to hold her here, but they all thought I was just hugging her....uhm ya....I hugged this woman TEN TIMES? get real pple...sheeesh. I was tryin to get her to sit her buttocks back down!  hehe

So Sunday I lounged the day away in bed, until Noon when that darn parental of mine forced me up! Really what's the big deal?

Come Monday morning though...I had another plan... oh yah...you know it hehehe

Momma got up at usual around 5:30am and I heard her let my dog outta my room....it occurred to me in another hour someone was gonna yank me from my comfy bed....well I wanted NOTHING to do with it....

Ice began to fall outside woohoooo..... but not quite soon enough... that darn home health lady came stomping in right on time...but I heard her call out "2-hour late start this morning!" so my plan was gonna work afterall....

I was still forced up and into that darn shower, but after breakfast I was put on my throne and handed my remote  I immediately found some really cool show on sci-fi and wasn't about to be interrupted...

YEP YOU GUESSED IT....while Momma was outside breaking up all that ice off my ramp and the drive way I was inside working my powers and begging the Universe to help me out one more time....by the time mom came back in the guy on the radio was singing those sweet sweet words to the world!

So today as I dictate this memo to the parental I am up, dressed, eating breakfast and going to school *sigh*

well til next time

Angel Hugs & Smiles

 

Friday, January 25, 2008 

Current mood:  bored
Category: Life

Well it has been a while since I have been able to get that momma of mine to take some dictation for me. *sigh* mom's!

It is winter and in Iowa that means STUCK IN THE HOUSE!  We have over 9 inches of snow on the ground and have had wind chills blowing in at 22below zero! brrrrrr

I don't know about you, but this princess has no intentions of turning into a harlicycle! I have been keeping my gorgeous self decked out in flannel pj's, pink fuzzy slippers and my favorite blankets!

Hey, when you add a recliner and remote it equals PERFECTION My winter mission is merely to take over the broadcasting companies, dictate the programming and flirt when ever possible.

My awesome friend Jill, from Michigan, is here in Iowa visiting her brother, and this darn cold has kept us from hanging out and developing our plans to take over the world! hmmph!  but Mom says we are gonna try again this weekend or next. I do hope I get to see her before she heads back to the frozen tundra known as Michigan

As you all know my friend Isaac has joined the otherside but his spirit is still right here with all of us. Its amazing how many peoples lives he touched while on his journey here, and the most amazing part is the heartprints his life has left on the hundreds of people he never met. His battle, his burden has inspired the masses ....gee he is almost as popular as me!!

On to other things...well things that pertain to me My puppy is gigantic now! Momma says he around 70+ pounds now! He is so smart too. My sissy taught him to bring me my remote when I drop it! HOW KEWL IS THAT!! so now I throw it in the floor all the time hehehe

I am gearing up for my awesome graduation in May. I am very excited to be done with this getting forced outta bed at 6:30am! Mom says I am gonna have a huge party....well we all know PARTY'S ARE MY FAVORITE!!

The Iowa Winter Games are this weekend in Okoboji....I told mom she needs to have some ski's attached to my wheelchair and turn my ramp into a half pipe!! whoohooo! think how fun that would be!

Perhaps winter wouldn't be so bad if I could have some fun too. There has to be something better to do with all this snow that sit in the house and pretend its not out there! Any ideas?? please send them...I need HELP!

Seriously folks there is only so much time you can pass watching t.v before you miss the real world.. *sigh*

I have an early out today from school, so I am looking forward to preventing my mom from watching soap operas heehheeh

Until Next time

Angel Hugs & Smiles