It has come to an end. There are mixed emotions. I am happy and relieved. Edward is sad but a little glad that I wont’ have to deal with it anymore.
My internet will be turned off tonightat mid-night. I have no idea when I’ll have internet again because of the move and then traveling to Texas to see Edward’s family.
I’ll try to find a way to write when I can.
No more mountains, no more doing things in a world all alone. Now there will be people to help me when I go places. Even if it’s just helping me communicate and figure out what people are saying. I am so ready for this move and I can’t wait. Although, I am sad that Edward doesn’t want to do it and he will not be happy. He saidthis is giving up his dream So how am I supposed to feel about this? Relieved for me but sad for him.
Either way, Adios to Asheville. a great place for many, but not for me.
A couple of weeks ago there was a Deaf-Blind awareness picnic to celebrate Hellen Keller National week.
Edward and Isaiah went to this picnic with me and we had a lot of fun.
We played games and met a lot of new people. But, I think the most enjoyable part for Isaiah, was the ride on a boat.
Edward, Holly, and Isaiah on pontoon boat while at the deaf-blind awareness Event at Lake Julian.
He loved the boat ride and watching the water fly out behind us. Showed him the sign for “boat” and he wanted “more boat”.
My little Zay is so cute. Everyone is always telling me how beautful he is, but his actions are so seet and cute. Hopefully soon I’ll be able to take him on another boat since he had such a good time.
I hear tons of music in my head since I can’t hear any of the new stuff or songs I’ve never heard before.
Today I was sitting here thinking. A song came to my memory. Edward is an excellent guitar player , and a good singer as well.
A couple of years ago he played a song at a family reunion for me. It was so sweet and now I’m remembering that day and that song. I’m happy that I was blessed enough to hear him play this song for me, and blessed that I can still remember what it sounds like.
Tell Holly I Love Her
If I were alone in the desert
Without a drink of water around
On my knees and hands in that white scorching sand
With the hot Sahara sun beating down.
If I could be granted my wishes
If anything I want would come true
I know it might sound funny
But here’s what I want you to do.
chorus
Tell Holly I love her
Tell Holly I need her
Tell her everything would be okay if I could just see her
Tell Holly I love her
Tell Holly I need her
And if I leave this old world tell her she’s the only girl for me.
If I were adrift on the ocean
A vessel with no sails or steam
Floating aimlessly on an endless sea,
Hopelessly lost it would seem
If all of the fish in the water
Could echo my last dying plea
Well I know you might not understand it
but Here’s what I want it to be.
repeat chorus
And if I leave this old world tell her she’s the only girl for me.
I hear tons of music in my head since I can’t hear any of the new stuff or songs I’ve never heard before.
Today I was sitting here thinking. A song came to my memory. Edward is an excellent guitar player , and a good singer as well.
A couple of years ago he played a song at a family reunion for me. It was so sweet and now I’m remembering that day and that song. I’m happy that I was blessed enough to hear him play this song for me, and blessed that I can still remember what it sounds like.
Tell Holly I Love Her
If I were alone in the desert
Without a drink of water around
On my knees and hands in that white scorching sand
With the hot Sahara sun beating down.
If I could be granted my wishes
If anything I want would come true
I know it might sound funny
But here’s what I want you to do.
chorus
Tell Holly I love her
Tell Holly I need her
Tell her everything would be okay if I could just see her
Tell Holly I love her
Tell Holly I need her
And if I leave this old world tell her she’s the only girl for me.
If I were adrift on the ocean
A vessel with no sails or steam
Floating aimlessly on an endless sea,
Hopelessly lost it would seem
If all of the fish in the water
Could echo my last dying plea
Well I know you might not understand it
but Here’s what I want it to be.
repeat chorus
And if I leave this old world tell her she’s the only girl for m Read more…
Edward and I will be moving in a few weeks to go back to Arkansas. This is not something Edward wants to do, but he’s going to do it any way.
Yesterday we had a little get together or picnic sort of as a going away party. Most of Edward’s close friends from his job were there. Everyone hates to see him leave.
One of his very close friends surprised me. I asked him if he could write print. He told me he could so I explain how to do print on palm. Then he signed his name. I was like, “wow….you can fingerspell?” He only did a few things when I couldn’t understand what someone was trying to say and I didn’t know where Edward was. But, I had no idea that Mike could fingerspell.
I do not want to sound ungrateful for anything . Having the gathering for us was very nice. But, once again, I was in my own little world. Edward was busy talking to his friends, doing stuff, getting things for everyone. He was not beside me to tell me what people were saying, or even who was there.
I am completely clueless about who was there, what people were doing, what was being said, etc. All I know is what me and Isaiah were doing, and Edward occasionally.
Gatherings are not really much fun for a deaf-blind person unless they have someone telling them everything that is going on. If you stop and think about it, would you have fun at a party or gathering if you had no idea who was there, what was going on, what was being said, or even if people were around you or had walked off? This is my world. I have to be told these things, and if no one tells me, then how am I supposed to know?
I haven’t written in here much lately. At the end of this month I am moving back to Arkansas.
Edward loves it here in NC, loves his job, and loves his friends. He doesn’t want to go back.
“It’s perfect here.” I told him to stop and think about it for a second. It’s perfect for him, but not for me.
I have to do everything on my own, or wait until Edward gets home from work to have help. I can not communicate with the general public because they don’t sign and I can’t have them write or read their lips. I do not have it as easy as most deaf people who can just carry around a little notebook and have a person write when they do not understand.
Also Asheville is in the mountains. hills, slopes, all sorts of balance issues for me here. I can not even walk out of my own house without a fear of falling. Soon after you walk out of the building, there is a sloping sidewalk that goes up and then get to the top and it slants down. With no vision, my balance is worse than most people’s with just a hearing loss. I also have a weak right leg. Combine all that together and I fall very easily.
There is no support for the deaf-blind person here. I can not get any sort of help or assistance. I just have to summerize what I want at the store or doctor’s office and just hope they do what I told them.
I am going back to Arkansas where there is flat land! Also, Edward will be with me all day again and can help me communicate with the public and be there when I fall. It will be better than feeling comppletely lost in the world.
I do feel bad for him having to quit his job, but family comes first. At least that is the way it works in my book, and him coming back would be the right thing to do for his family. In life you do things for your spouse even if you don’t want to. This time it’s his turn to do sometihng for me. Who knows when I’ll have to sacrifise something ffor him. I just know that in order for my life to be easier and better for now, I have to go back home.
The National Institute of Health is doing a natural history of NF2 study.
I called today and they are still accepted people into their study. I should be contacted within 10 days to find out if I am accepted into their study.
I hope I am. It would be so great. Since I have trouble finding good medical care to trust, they are excellent and I would be in good hands. At least for 5 years, the length of the study.
Cross your fingers that I get accepted into this.
