Destructive and Carpet...August 18th & 19th 2013

As I mentioned in a previous message, we didn't move any of the living room furniture back into the living room, because we were now considering carpet. We had help finding a carpet company, and had set up an appointment to look at types and colors.

This Sunday began as normal, we went to church, and then lunch with the family. While at my FIL's house, we began talking about changes in the living room we wanted to make. We have these half walls in our living room, that are about 4 feet tall, they separate the living room from the entry way and hall way. The really bad thing is that they are painted a black on top; they collect junk, mail, and other items. From the front of the house we could only enter the living from one area between two load barring poles. The poles were sheet rocked and painted the wall color, which on the entry way was gray and now on the inside was a yellow that we had our friend paint it.

Our thinking was to remove the half walls; the difficulty was with the power outlets and the A/C return vents. We talked it over with FIL and BIL for a long time after lunch. And we knew that we needed to do something before the carpet was installed. And just the next day, the carpet company was coming to take measurements and to show us samples.

Can anyone guess what we did that afternoon? We, hubby and I removed the half walls ourselves. Yes, we did all on our own. No family was going to help, nor wanted to help, so we just did it. We thought no better time than the present.

We began at 3pm and worked until midnight. It took us from 3 to 9pm to just remove the first half wall, the one closest to the basement door. And then the remaining 3 hours to remove the second, the one closest to the kitchen.

I knew it would be messy, but I didn't realize it was going to take so long, and require every muscle in my body for some tasks. The sheetrock was the messiest, as it just crumbled after cutting it. There were nails that were the size of my hand in some of the wood. And they used way more nails than needed. Those half walls were never going anywhere. Some of the time we spent cleaning up and throwing things away. We filled up our garbage container that is on wheels. Plus two additional drum liners of sheetrock.

At one point hubby was using a sledge hammer to knock out some of the wood, I removed more nails than I can count. We must have made quite a noise. Our neighbors were not happy with us.

So the next day and for several other after doing all that physical work, I was sore and achy. I could hardly move on Monday, I felt like I was 100 years old. Oh it hurt. Like I said muscles that I didn't know I had I used and then got sore and achy. Hubby was a little sort in spots too, but not nearly as bad as I was.

When we told family that we had removed the half walls, they didn't think or know that we could do such a thing. But it was us, no one else. A blind man and deafblind women.

Of course removing these half walls then opened up another can of worms of things to do in this living room to get it back to normal. But all things that would improve the look and feel of the area.

Monday August 19th, the carpet company came, took their measurements and showed us the samples. Being that hubby and I can't see a lot of color. Me on good days I can tell the difference between pink and blue, others nope. And hubby not seeing any color, but being able to see patterns. We are a pair. But the sales man came to our home, helped us describe the carpet color, gave us his opinion, and let us keep the carpet samples for a while until we made our decision. We then asked family, and friends of their opinion. I had a picture of what I wanted in my head. I wanted an open airy room that was bright but comfortable, inviting, but relaxing.

Well enough of our home improvements for now...you will have to stay tuned to see what happens and what color we pick.

More to come...

Coming to the realization...August 2013

As I mentioned in a previous entry, the audiologist that I received my new aids from, I am not completely sure he knows what he is doing. After that appointment, and through the month of July, granted it was a slow realization. I was realizing that my new hearing aids weren't solving all of the issues. This was hard to swallow. Especially when I traveled down to Philadelphia for the BELL program, was riding on the train, communicating with other adults and children, attending meetings, talking on the phone. In some ways they are better, if I am in a small group situation with no other background noise, with only one person talking at a time, then great. But can you think of how many times in your life or day how little times that situation happens. Not much in my life. I have turned into a hermit crab. I mean I still love going out; it’s just harder to do now. Every situation is different, and when I go out I have to ask myself. Am I going to hear this? Will I hear that? I never know until the situation is upon me, in other words to plan for such situations is difficult at best. I think what I was putting a lot of promise into was that these new aids would cure all. They haven't done that. Realizing that was emotionally hard on me.

I think I have been praying that God would cure me, would give me back my hearing. But he has not. Some days I am okay with knowing that I won't be cured, and that there is a purpose, other days I am mad, frustrated, and just down about this. On those days it is harder to see the purpose, the plan. I say to God a lot can you please just show me the reason, what will come out of this. But he doesn't. I probably won't get it until I am old. And just like above, some days I am okay with that, others I am not.

I can say that with it’s sort of like getting a new pair of glasses, thinking you’re going to be able to see so well with them. You get them, your eyes adjust, and then only after a bit, the glasses make no difference. My new hearing aids are the same.

The fact that now I had finally been given a start date for HKNC, but that I had not made a decision on my near future path, was very heavy for me. Oh my, I want to graduate so badly. I am so afraid of failure. Taking all of the different aspects into account drove me out of my mind on some days. I don't mean literally but the questions. Do I do this, but have troubles? Do I do the other but take off school? What would God ant my path to be? What is best for me? What about my internship? What would people think of me? does this mean I fail? Why can other people do the similar things as school, internship and are deafblind, but I can't? And the questions and questions when on and on. I talked to people I trusted, talked over with it with hubby, and prayed a lot.

By this time school was only a week and half away, I felt the crunch to make this decision. Once I made a decision would I feel better? Would I be doing the right thing? UGH!

I have a wonderful husband, one who has been there every time I have cried, been mad, and been frustrated. He has been there every single time, no matter what. Even if it meant delaying getting other things done, he would cuddle or hold, talk, let me cry, or just listen at any time day or night. I will here and forever more profess, that I have the best, most wonderful, most caring, most loving, husband in the whole wide world. I know of no other man who would do the same for their wife. A wife who has not necessarily been the best to live with. A wife, who probably hasn't taken care of her husband as much as she should. But a wife who thanks God every single day that he is her husband, for the blessing of her marriage, for the love that God has given them to love each other, and for all that they have. If I could give him an award I would in a heartbeat, as he wins a prize of 1# Husband! I would as far as to say that through this, through the loss of my hearing, that god will have made our marriage stronger, has deepen our commitment, and has increased our love for each other.

Although I have come out to certain people, to certain groups, it’s still hard for me to just say to a stranger, I can't hear you. It’s still hard for me to express my needs to even my friends. All things I need to work on.

So I guess this is all for the rambling for now...More to come about our destructive weekend!

August Already? August 1st to 17th 2013

First I have to say I am sorry, as it is now September when I am writing this, thus forgetting things, and then having to write about them out of order. Not that out of order is bad, but because I haven't been good about writing when things happen, a lot of the moment, the emotion, the details are lost. Once I catch up, I will do better, I promise. :)

So as I already mentioned I forgot the death of a friend’s father. On July 24th, while at the BELL program we found out that he had passed away. He was a very well respected person. Although I didn't know him super well, he was an extremely nice man. On July 29th, was his funeral. Hubby took off work, we worked out transportation, dressed up and attended the funeral. The service was a catholic service, then there was a grave side prayer, and then a luncheon afterwards. It was sad, but in the respect that if you look at death in that you will be with God then. He was in his 90's, had lived a wonderful life, was fighting cancer for the 2nd or maybe 3rd time, and now is no longer in pain. I know that many people will say it’s hard to think of it that way, when, they are grieving. I understand they miss the person, its not fair. But we are only on this earth for so long, and when it’s our time, it’s our time.

Anyways, on to more cheerful subjects.

We had a life group right off the bat in August, the 2nd to be exact. On Sunday Joe played in the worship team, and overall it was a weekend.

Tuesday August 6th, I went on my normal shopping trip with my life group lady friend. Later that evening, hubby and a neighbor’s husband had a deacon and elder meeting. So she and I got together for dinner. Her little boy had already gone to bed, and she made a very delicious salad. It was nice to sit around and have a good girl talk night. At around 9 I went home. The deacon and elder meeting started at 7, but hubby wasn't home until at least 11:30pm. Yes those meeting last forever. I can't really complain as hubby isn't out like at bars or anything like that, he is at church serving God. I love him more because he is doing those sorts of things.

On Wednesday, HKNC wanted the lab work to be redone. I had submitted lab work from March, but it wasn't what they had wanted, so I had to go back to the doctor’s office, get them to write another order. I then went and got the lab work actually taken. That was not the big deal, then I had to wait to get the lab results in, get that from the doctors, scan the paperwork so I could email it, and send it off to HKNC. Thank goodness for wonderful neighbors and friends who helped do all of this running around, picking up paperwork, and so on. Finally...Finally... my application was complete on Friday August 9th. So now the waiting game begins...

On Thursday august 9th, I had an appointment with the audiologist. We didn't have a ride for a long long time, and then just that day, someone from church volunteered to help, another blessing. So we left the house at 5:30pm, and went all the way down to Bensalem. We actually arrived a bit late because traffic was so bad. I guess by this point I had had my hearing aids for a month and half. I wanted the audiologist to make some changes to the settings. And also specifically to look into why the FM system does not work. I thought that he was going to test my hearing, which he did not. But he didn't know how to make all the changes I wanted/needed. So the audiologist called the help line for the hearing aids, Oticon. He was on the phone with them for almost an hour. He made quite a few different changes to the aids. The manufacture or the people on the help line, recommended that the audiologist send back my new aids, the FM system, and all of the accessories. What? No way! So we told him that we would go home, and try with the new settings made, and perhaps we could get the FM system to work. Really I didn't want to send in my new aids. In all reality and honesty, I don't think this audiologist knows what he is doing. I would not recommend him to anyone. So after was all said and done, we headed home, I could not tell that anything was different with the programs or settings on the aids. The Audi was on the phone, and they were instructing him to save and get out of the program, not sure if he did it right. Because nothing was different. UGH! How extremely frustrating. It took us only an hour to get home.

Also just a reminder, that after our living room was painted, we did not move the furniture back in. Mainly because we then began thinking about carpet and doing other things with the living room.

On Saturday August 10th, we had a chapter meeting in Philadelphia. It was a fairly normal meeting. I did share with the chapter about my hearing and potential plans of going to HKNC. This was hard for me, for a few different reasons. These are my friends, but these are also people who belong to this organization. An organization that has not had a good past of accepting others with other disabilities. An organization that promotes independence to the extreme. I am very critical about them not accepting those with other disabilities. I have practically belonged to this organization since I was born. Those who are Deafblind have not just the issues of not being able to see, but have issues with communication, traveling independently, employment and more. With all of this to the extreme multiplied by 100. So anyways, it was hard for me to tell these people, they were a lot more accepting than I had expected, and very supportive. Some of them would like to learn how to sign tactually, and I would love to teach them.

After the chapter meeting, hubby, I, and two other chapter members went to Independence Square, where the Commodore Berry statue faces south to the navy yards. We took our lunches and did some readings of braille. There were a lot of tourists looking around. It wasn't the hottest day we have had, but it was certainly warm. If my memory serves me correctly, later on that evening, we discovered that the A/C wasn't working again. UGH!!! 

On Sunday, I served in the nursery. On this particular day, there was only one baby. After playing for a bit with him, he cuddled up to me and fell right to sleep. Many families are out during the summer, so the large amount of babies in the nursery is reduced. After church we had lunch with BIL and BIL's girlfriend. The rest of Sunday was spent getting ready for our trip to Altoona PA.

You might be asking where in the world is Altoona PA? It’s in the western part of the state, west of Harrisburg, but east of Pittsburg. It’s pretty much in the middle of nowhere. It’s a 4 hour drive from our area. And secondly you might be asking why did we need to go to Altoona PA? Hubby had a meeting for the advisory committee he is on for the governor.

The really bad and awesome thing was that, there is virtually no public transportation to Altoona. But the awesome thing is that we hired an SSP to drive us out there. Before I go any further an SSP is a person who works with a deafblind person. SSP stands for Special service provider. They are the ears and eyes of a deafblind person, helping with guiding, helping with communication, and driving. Because I knew that hubby would be busy with his board duties, I needed someone to help me.

So we left our area at 5pm, and drove, and drove, and drove. We stopped in the Harrisburg area for dinner at McD's. So the whole way there we listen to every song that Taylor Swift has ever sung or written. I could not hear much to talk, so listening to music kept us busy. We arrived in Altoona around 9:30pm. We got checked into our room and went to bed.

I have to stop and say that it is been hard for me to initially accept the help of an SSP, it’s been in my nature to be a fiercely independent person. But as my hearing continues to get worse, or I get reminded that there are things I just now have a harder time doing. Having an SSp, does help, it is needed, and prevents hubby from doing everything. Yes I know he does want to help, to be my repeater, but he has responsibilities, I can't keep him from those things. SSP’s also help me keep some sort of thought of independence. An SSP is paid to do what they do, its not a friend, although the person can be a friend, but its not like your imposing, or bothering them, they are doing what they have been trained to do.  

So the next morning, we all met up at 8am to have breakfast. The hotel we stayed in had a continental breakfast. There we saw others who were there for the meeting too. We packed up our belongings and went to the meeting location. I think we actually stayed in Duncanville. And the meeting was in Altoona. At the meeting, there were a lot of people. It was in a fairly big meeting room. Unfortunately for a number of reasons I didn't hear a lot of the meeting, other than what my SSP repeated to me. This is exactly where knowing more sign would help me. During the meeting, there was some talk about an SSP program being started, and both I and my SSP spoke about it. The meeting lasted from 10 to 2pm with lunch included. Once the meeting was over, hubby told me that I didn't miss much. With that said it frustrated that if I am in a large room, it’s hard to hear the speaker. So much for these new aids.

Shortly after the meeting was over, I changed my clothes, hubby changed his clothes, and we were off for home. We drove straight through to home. We arrived at home around7pm, to a very very warm home.

Like I mentioned the A/C wasn't working again, UGH! UGH!

I'll step back here a bit, on Monday right before we left for Altoona, I got a call from HKNC. They said they had received all of the paperwork, that the team had reviewed the application, and that I could begin on November 12th. That they did not have a sooner start date, but I could have that spot. They also had some questions about my lab work, and how my blood sugar was high. The doctor didn't tell me to fast, not to eat, so I ate breakfast and then got the blood work done. DUH! People, of course eating breakfast my blood sugar was going to be high. But now they want a letter from another doctor explaining why it was high. Oy Vey!

At the end of the week, Friday August 16th, we had a life group. We provided the snack of Yum Yum donuts. And I taught the lesson. For anyone who does not know, Yum Yum donuts are the best. Way better than Duncan Donuts, better than Crispy Cream. If you’re ever in the area you must have a Yum Yum donut.

I can safely say that this weekend began with being normal. Hubby had a men's breakfast on Saturday morning. The rest of the day was spent catching up on organizational responsibilities. And I will leave it here, I will say that the rest of the weekend gets way more interesting and destructive. So with hat cliff hanger...Until next time!

BELL week2 and the end of the month..July 22nd to 31st 2013

Before I go further, I must mention that after trying hard to contact the original A/C person, we finally found another person who would come in and fix the unit. He came on Sunday, after church, and did some looking around. I don’t understand the ins and outs of exactly what was wrong but he fixed it. Not many A/C people would come on a Sunday and help us, I was just ahppy that he fixed it and it was now getting cool in the house again.

Monday July 22nd 2013

We began our second week of the Bell program. This week one of the little girls who had been attending the program, switched out with another young girl. Also the heat of the week before let up. Also it seemed that a cold was being introduced into the mix, not that I had a cold, but another one of the main teachers got sick.

After our day was over with the kids, my O&M instructor was going to observe the program, and then we were going to fill out my reauthorization paper work for SEPTA CCt. Well I didn't get the paperwork in the mail, so we could not fill out anything. She did get to observe. She and her husband had enrolled their son but they later felt that the program was too old for him, he is 4. I personally thought he would have been perfect for it. We had other children, they did great.

Tuesday July 23rd

There was another trip to the library set up. For this trip I decided not to go. It wasn't that I was capable of it, but I just thought it was harder for me in that I could not hear. I could have never lived with myself if something had happened to one of the kids and I had been working with them. So even though I didn't go, the head teacher kept me busy the whole time while they were gone.

By this time in the program we really had everything down.

Wednesday July 24th

Hubby's mother and SFIL came down from RI to visit. Well SFIL had some things to do with his car, his vintage car and garage. They came in on the evening and were able to pick me up from the train station. For dinner they treated us to Tex-Mex with lots of margaritas. By this time of the week I needed it badly. I wasn't feeling well, as that cold going around had finally found its way to me.

Friday July 26th

Our last day of Bell. The day started out as normal as the previous two weeks had. We on this day had all 7 children instead of 6, the little girl who could not attend the second week, came back for the last day. While the kids were with us, the parents were at the state affiliate office having their parent meeting. It was a good turn out of the parents.

After lunch, the parents and staff from the state affiliate office came over. We had a little ceremony for the parents and children. Each child got a bag of goodies, a braille book, treats and other items. Before every one left, they got a Rita's waterice. Some of the parents left very quickly after we were done, other stuck around. It was a little disappointing not to talk to some of the parents, but those that did stay to talk I enjoyed getting to know.

Pup had done great for the whole two weeks of this program; she lay under a table while the kids would run around them. Even when the kids looked at her, she would stand up, but not do much else. Another one of the main teachers had her dog there too. The littlest children loved dogs, and would want to pet, but we set rules about it very early in the program, we did not allow any petting.  Pup loves kids. The only issue came on the last day; she was tied down to a table in the back of the room, behind where the kids had lunch. One little girl dropped food on the floor, I am not sure on purpose or by accident. Well pup then thought that is was for her, I caught them both. Of course I wasn't happy about this. I corrected pup for taking the food, and asked the little girl not to do it again. There were no more incidents like this.

One of the young girls I think who were 9 years old lived up my area of Philadelphia. They would often see me on the train. It was a little awkward because they would want to talk on the platform; I haven’t quite gotten use to telling people I can’t hear them.

When I got back to my normal train station, MIL and SFIl picked me up. We first went to return the rental car and then home to drop pup off. They us, myself and hubby, MIL and SFIL, BIL and his kids all went out to Uno’s pizza. We had an early dinner. We said our goodbyes to MIL and SFIl at the restaurant, as they were heading home the next morning, and we had a life group to go to.

So hubby and I went off to our life group. But oh my word I was so tired. I probably didn’t participate as much as I should have. But I could not for the life of me keep my eyes open. I actually don’t remember a lot of what our study was that night because I kept on dosing off.

The really awesome thing was that the weekend although nothing was planned, we stayed home. The rest of July was fairly uneventful. On July 30^th, I with the help of a lady friend from my bible study went to get my X-ray for HKNC. I was forced into this x-ray, mainly because I am allergic to the test. The test that they do on your fore arm. And because the only other method of making sure I do not have TB is to have a chest x-ray. Let’s just say that getting the x-ray was an adventure all itself. I signed in fine, but then when the tech called me back, it was a male. Of course I needed to take off my shirt and bra and put on a gown; first he was embarrassed, and then secondly didn’t know if I was capable of changing myself. I insisted that I was capable of doing so, and then had to walk down a long hall, in a gown with no bra. Oh my word how uh... exposing! So then when the tech took the x-ray, he had to take 4 pictures for one test. The first two he didn’t do it right, and then finally got it right on the 3^rd and 4^th time around. Once that was all over, I quickly changed back into my own clothes and went on my way. Oh boy! Later on in that day, my O&M instructor came up to my house and we finally got that paperwork for the SEPTA CCT service filled out. Filling out that sort of paperwork is quite stupid but funny all in itself. Let’s see I am not able to cross streets because I can’t hear, so then can I really take a public bus, uhh…. NO! Well it was nice to get it done and over with, we also had time to catch up and talk about things going.

Before I knew it July was over and August began. Where did the time go, where did July go??

By this point I still had not made a decision on whether or not to go to HKNC, I was still getting the application together. As they continued to want other documents, which forced me to have to do more blood work or go to the doctors. I was getting a little frustrated by this. I also wanted to make a decision; I wanted God to give me the right path. But neither was happening. I actually wanted a bill board, but also knew that I wasn’t going to get that from God. I was trying very hard to let God determine the path, to let him make the decision, to close door and open others, but that wasn’t happening yet either. I guess that I needed it in my time, and not his.

Stay tuned for a wild and crazy August…