HollyAlonzo – Never Giving Up Hope

Hello everybody. It’s me again Hollys husband Edward. Well Holly got her brand-new one cup coffee maker today. I was going to give it your on her birthday. but I decided she could go ahead and open early, and she will be going to Los Angeles, California for surgery this month. She said today, after she got it, “I’m freezing” I said, make some coffee. She said okay, I guess I should try out the new coffee maker, to see if I like it. I said, okay that weekend. I’ll be able to watch you, and make sure you do it. Okay, without any accidents. So, she went over to the sink, and made the coffee just fine. After she made it, she put a little makeup that was provided, and then took it in her wheelchair from the sink, back to her desk, which is in the living room. She did it. I might add, with no mishaps. Good job Holly. I know it may not seem like much, and that making coffee is a normal occurrence for most of us in our everyday lives, the someone that has takes 30 issues with her hands, and is in a wheelchair, totally different lines, it makes it very tough to do things that we normally take for granted. I just wanted to write in and say all that, I’m sure Hollywood right and then let you guys know some of the same material. Everyone take care.

The time has come. After two years…I have no choice.

I have to have surgery to remove the tumor on my hearing nerve. This is
very frightening for me.

Once the tumor is removed, I will be completely deaf and blind. I don’t
have much hearing now, but at least I know if there is a lot of noise around
me.

I don’t know how it will all play out. I have never gone through a surgery
without my hearing.

I know I don’t write much these days. I really hate using the computer.
Some tumor, possibly this one pushing on my brainstem, is causing me to
lose hand coordination.

This is very challenging because I use my hands all of the time. Now, it’s
very difficult to type. I have to have Edward go through and fix the
typing errors.

Back to this surgery. ABI or not, the tumor has to come out. It is causing
some pretty serious symptoms and there is no more time to wait.

If I’m not able to get the ABI this time, there will be the future. I am
having the surgery in L.A. with Dr. Friedman.

I want someone who knows what they are doing to do this surgery. He is
still waiving his fees as well as the hospital. I have from now until the
surgery to come up with the rest for the ABI.

I am scheduled to have surgery bright and early on January 11. Terrified?
Yes. Let’s just hope I am strong enough to make it through this.

Hello everyone this is Holly’s husband, Edward Alonzo. I know it has been a long time since you guys have heard from me. I don’t ride in this very often, unless Holly wants me to.
Sometimes, I feel like I should write more, at least for Hollys sake.
You probably wouldn’t believe this, but I am actually posting this from my iPhone.
I am using a dictation software from Dragon NaturallySpeaking it’s actually from Nuance Communications.
This software, enables you to dictate by voice, into the iPhone, instead of typing on its tiny keyboard. Well, I just wanted to test this out, and see if I can get it to post correctly. Hope this works.

One of the many things I can’t stand is relying on people.

It’s not that people don’t do what I wish or what I ask them to. It’s that they will do it when they get around to it, or forget. I am a very independence person I guess. I would rather do it my self right away.

As I’ve mentioned before, my mind races. I may have fifty things I want to-do but I can’t do them all until these other things get done, and I am waiting on people so nothing I want ge3ts done, when I want it to. It’s a never ending cycle. I just tell people “chop chop. It will only take two second.”

My husband likes to sleep late. I think most blind people have issues where they like to stay up all night and sleep half of the day away. I’m the odd one.

I wake up anywhere from 3 A.M. to 9 A.M. and when I wake up I want coffee.

Well I am in a power wheel chair and coffee is rather hot. Not exactly something I want to spill on myself. So I always have to wake Edward up and have him carry my coffee from the kitchen to my computer desk.

He is very sleepy, and half dead, and it takes me a few tries to get him to do t his.

Today, I made the coffee and then had an idea. A travel mug. I will use a travel mug with a lid on it so that hot coffee will not slosh out on me.

One problem. I couldn’t get the stupid lid off to pour the coffee in because of my grip and coordination being messed up in my right hand. So I went in the bedroom and asked Edward to open it for me. Since he didn’t have to get up, or focus much, it was no problem. He got the lid off for me This is frustration too. I want my grip back so that I don’t have to have people help me open things. I’ll find some adaptive house hold items though so that I can do this myself. It just may be a while longer before I get a chance to do this.

I went back to the coffee maker and poured my coffee. Then I put the lid on it, made sure it was shut, and put the cup in between my legs while I was sitting in my wheelchair.

I was set. The test would come when I went from the kitchen to the living from, over that threshold. It’s a little bumpy, and the coffee would slosh, making it impossible for me to usually do this on my own.

Well, with the travel mug, it was no problem. There was a lid on it and when I went over the bump, no hot coffee came out on me.

It’s very small. Just getting coffee make’s that big of a deal? You bet. Anything at all that I can do myself, it so very exciting. It makes me feel just a little normal.

When a service animal is around, no one is really supposed to play much or heavily bond with them other than the handler.

It really depends on the animal. If your animal can handle the difference between work and play, then all is fine.

Andre can. He ignores anything and everybody except Edward as soon as that harness goes on. In fact, I call him a snob at times when he’ll flat out ignore me or others.

But, that’s a good thing, to the handler. It insures their safety. The handler knows that his animal will not get distracted and make a huge mistake that could endanger them.

Because Andre can handle work and play with other people in the household, we have never limited Isaiah’s play with Andre. Those two are great buddies.

The chase each other all over the house. Poor dog doesn’t have as much energy as Isaiah does and sometimes wants to hide and rest. This makes Isaiah sad, and we just explain to him that Andre is tired. He doesn’t want to play anymore.

Edward was acting like a monster and had a mask or something over his face. Isaiah loves to be chased. When I could still hear him, I remember him saying “momma? get.” He wanted you to get him.

Well when Edward did this, Andre freaked out. He wouldn’t let Edward anywhere near Isaiah until Edward showed his face and told Andre it was just him.

Andre is a German Shepard. GSD’s are known to be protective, but I never thought of Andre that way. But he has obviously formed a bond with Isaiah and will protect him the best he can, even though that’s not his job.

Now, the dogs are trained to be nice and friendly, but instinct will take over.
Andre is the biggest teddy bear around, but if you walk up and hit Edward, he
s going to have something to say about it. That’s his Dad, and no one messes with his Daddy or Isaiah.

Isaiah came up and told me “Andre’s my friend”. So cute. He’ll sit in the floor and hold ”big old’ Andre in his lap. I wish I had pictures to share, but I don’t. Neither myself or Edward can see at all to take a picture, and when someone else takes a picture….we have to try to get them to remember to send us the picture to put on our computers. This may or may not happen, and if it does it could be a long time from when the picture was taken.

So, we don’t usually worry about pictures. Other people take pictures of Isaiah and the eventually get added to a photo albumen, but it is for other people to view, not us.

There is no problem with Andre and Isaiah having such a t tight bond, because it doesn’t effect his work. Also Isaiah knows that when Andre is working, not to bother him at all or in any way. When Edward retires him from working, probably in five or so years, Isaiah will have one amazing pet.

Things I used to do or enjoy aren’t exactly fun for me anymore.

Not being able to hear or see, isolates me even though people don’t intent to do that. It happens anyway.

I want to be part of my son’s life, even though I am deaf and blind. But that is hard when there are hearing, or hearing and sighted people around. They are more fun than me.

Isaiah’s vocabulary is very big these days. Unfortunately, I only know a few signs. I can show him all of the sign for the words he know. So, communication becomes an issue. He knows what he wants to tell me, and he knows how to voice it. But, he is unsure how to tell me personally, to sign it.

Then he just wants to go to someone hearing and say it. And who could blame him? They know what he is saying.

We put up the Christmas tree. Isaiah says it’s pretty. But, I didn’t help much. I was left in my dark and silent world…again. I don’t blame anyone for it. It’s hard, and people aren’t very used to this. Especially considering how fast things changed and me being in “limbo” with this hearing loss.

I just want to be part of my son’s life, and communicate with him as easy as everyone else does. I am not sure how right now. The only possible way is for me myself to learn sign language. Not just a few words. But an entire vocabulary. Then I can show Isaiah and he’ll be able to tell me the things he is saying.

It’s rough being deaf and blind. Missing out on the things that go on around you, feeling isolated in this big world. Especially around the holidays. Not being able to communicate with others when you want to. It’s not easy. I can only hope that once I get more used to, or adapted, to this deaf and blind world I live in, thing will get easier and I can do the activities I used to enjoy, yet again. Until then, I have to tough it out and be strong.