Posts Tagged ‘Support Services Provider’

Well, the winter hibernation is about over. Just before Spring arrived, we took a little hike on one of the first warm days at the very end of February to clear the cobwebs out of our brains and stretch the stiff muscles that were beginning to petrify. I had so much fun that I thought I would share it with my readers here and at Homes and School Mosaics for April’s post. Yes, that is April. I know I missed January, February, and March. I will be posting them in the coming days. I had some technical difficulties with my technology and thought posts were made, I couldn’t find them with my braille display to share them everywhere. Apple did some updates that seem to cause a slight problem, but they have since fixed it. So, I can now find things on the internet again. Life can be a bit treacherous for travel at times if you are DeafBlind and the internet world is no different really. I do hope you learn a bit about how a DeafBlind person can love to go out in the woods and do so safely. That is better exercise and more fun than a treadmill I can tell you!


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There are a lot of awesome things on Homeschool Mosaics this month about the holidays in regards to giving, remembering the importance of family, and including the Special Needs members. My column is all about how to include them in the upcoming festivities including the DeafBlind, so please check it out and think about those you may need to think about and how you need to do that to have the best holiday season for everyone!


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Laura Dewey Bridgeman

This week is DeafBlind Awareness Week! Helen Keller’s birthday was June 27th. She and her predecessor, Laura Bridgman, made advancements for all DeafBlind people. Both worked hard to overcome their disabilities to become educated. They both wrote and spoke about the needs of the disabled.
Today, there are approximately 100,000 DeafBlind children and adults. We all work hard to overcome the obstacles in our life. We all want to be as independent as possible. We all want to contribute to society and make the world a better place. We are capable of learning and doing many things. We prove that every day.
Sometimes, though, we need help. Education, training, assessable technology, support service providers, etc. are all expensive. There is also a lot of medical research going on to help improve our lives and even one day to provide cures for the causes of DeafBlindness. There are a few organizations that help the DeafBlind. Your support would be appreciated.
Helen Keller National Center for DeafBlind Youth and Adults in Sands Point, NY is the largest by far. They provide intensive training in all areas of a DeafBlind adult’s life. You can learn more about them at http://www.hknc.org.
The American Association for The DeafBlind is another. It is an organization run by the DeafBlind to help educate the public, government, etc. about the needs of the DeafBlind. They also work to provide support to the DeafBlind. You can learn more about them at http://www.aadb.org.
Another organization that helps to provide training and accessible technology to DeafBlind children and adults is DeafBlind Hope. DeafBlind Hope is a small non-profit, but over 99% of the donations go straight to the DeafBlind clients of DeafBlind Hope. We assist parents in learning how to teach their DeafBlind children and raise funds to provide training for adults. We provide technology to children and adults that is suitable for the individual needs. We also work to teach the public that the DeafBlind can do if given the tools they need to become independent. DeafBlind Hope is another organization operated by the DeafBlind for the DeafBlind. The CEO is Renée K. Walker who is DeafBlind and writes this blog. Yes, I am talking about me. I sincerely work every day to make the lives of the DeafBlind easier and more productive. We all just want to become as independent as possible and do our part in making the world a better place. You can find out more about us at http://deafblindhope.org
Please learn more about deafblindness and how it affects these children and adults. Consider helping one of these organizations. You will be bringing Hope to the DeafBlind!

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Touch Points
By Renée K. Walker
It is a new year as I write this column. I am thankful for so many blessings in my life and the ability to find ways to still be productive despite being deaf and blind. I think we all want that for ourselves. The New Year coming also gives us time for reflecting on what we want to change about ourselves and our lives. Often, we keep our reflections to beneficial but more surface aspects such as losing a few pounds or starting a new hobby or learning to lead a less busy life. After a hectic year of fighting some of the usual DeafBlind issues such as needing interpreters for doctor visits and being included in social and family events, I couldn’t help but remember the many comments made to me from readers of this column and comments from others in other DeafBlind venues on forums or Facebook. The common thread I heard was about negative attitudes among not just the hearing/sighted members but also those of other disabled people even DeafBlind people. That saddens me. I, too, have felt the negative attitudes and had hoped my experiences were isolated. For these reasons, my reflections this year turned more outward than inward with the desire of change being for all of us.
The comments seem to relate similar incidents as my own, so I will mention just a few here. I am sure you can relate to a few and add your own. I have encountered the usual hearing/sighted issues that you have read about even here before, but the ones that distress me the most come from other disabled especially other DeafBlind. Many Deaf will not socialize with me except through an interpreter. They actually fear the touch of tactile ASL. A few have even expressed their displeasure that ASL is even used by the DeafBlind at all since these few think it should only be a visual language. Then there are the blind and other disabled who also have disabled parking permits as I do complain that I don’t look handicapped, so I should walk like everyone else. I have my reasons and have had a permit longer than I have been both deaf and blind. It had nothing to do with vision or hearing issues. I do still prefer to use it even for those reasons because of my safety and the safety of my guide dog as I try to harness him and often have almost been hit just trying to get us both out of the vehicle. There are also the few totally blind who feel that those who have some vision shouldn’t be considered part of their group because the ones with some vision still don’t know what it is like to have no sight. Then there are the few Deaf and some DeafBlind who are culturally Deaf and feel that only native ASL signers can be culturally Deaf. I have been deaf since a young child, but I learned to speak and the oral method was the only method available to me because there was no Deaf community near me in the places that we lived as I grew up. You can’t learn what isn’t there, but that doesn’t make my experiences as a deaf child that much different from others except possibly more difficult, since I didn’t have a visual language to build on or a family or community in which I could full participate. Now that I know ASL and wish to practice it more to fluency, I find it disheartening when a DeafBlind person literally pushes my hands away because they realize I am not a native speaker, and they decide they do not wish to have further contact with me. The DeafBlind community is already very small and widely dispersed. When we often don’t fit in with the Deaf community, you would think that we would be happy to share with any other DeafBlind person, since many of us claim that isolation and loneliness are friends we have that we prefer not to have.
My experiences are similar to many others. These experiences are like walls being placed around me keeping me contained in room that seems to grow smaller. Truthfully, I have referred to these experiences as being with negative attitudes, but they are actually nothing more than outright prejudices. A person can be more than just racially prejudiced. Prejudice doesn’t have limitations. Anyone can be prejudiced, and they can be prejudiced about many different things and people. These prejudices against people who don’t sign or didn’t sign until later, who are not totally blind, who don’t look disabled, or others are dividing a small group into even smaller groups and causing even more pain than the society as a whole that tends to ignore us at best. It is often easier to cope with pain from outsiders than from those who are the same or similar. You would also expect that people who have been hurt by others because they are different would have more compassion for others who are different. Sadly, that isn’t always the case. Humans are capable of much pain to each other, and sometimes those who have been hurt can inflict even more on the ones around them.
In addition to the pain caused and the barriers of further isolation that are created, the disabled group that could stand together as one and have a louder and stronger voice is weakened to the point of being inaudible and useless. The good we could achieve for everyone as a whole is diminished to nothing. The one group is broken into so many small slivers that there are too few fighting for a specific issue. As one, we could fight with a strong, loud voice for many issues that would benefit us all. But, no, we can’t do that because we are too full of anger at another who is slightly different to recognize that the other is actually more like us that we could be the same.
Damage caused to our voice by these prejudices is great, and the good we could achieve will continue to be weak and slow. The pain that we cause each other will continue to isolate us more and more until we each stand alone. Does that sound like a future that anyone of us would want? Do we even really want to wish that on someone else just because they are a little different from us?
Reflect on your own attitudes as this year begins to move into Spring, the season of newness. You may not be one of the few are among the ones mentioned here. It is good that I can say it is the “few,” but unfortunately, the few can cause much dissension and create enough chaos amongst the many that little can be achieved. If the few can see that their attitudes are no different and no less harmful than the prejudices of racism to our society and work toward new and positive attitudes toward others, change for good can happen. If the many can be willing to lovingly stand against the prejudices of the few to show that there is a better way, the disabled can come together and work for a brighter future filled with the ability to be independent and productive. I am only one person, but it can start with one. Who will join me?
If you have comments about this topic, you may write a letter in braille or print to Renée Walker, 143 Williamson Dr, Macon, GA 31210; or you may email me at rkwalker@wynfieldca.org. You can also read and comment on my blog at http://www.deafblindhope.wordpress.com. You can also check me out at http://www.facebook.com/reneekwalker.

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Well, this post is a look back, but it is written in more of a now time-frame. The last post at HKNC never got written. You see, I spent my last two weeks in New York in the hospital. I came home and was sick with pneumonia yet again. I was still recovering from pneumonia in early February when I had the worse case of vertigo that I have ever had in my life. The doctors were unsure what happened at that time, but evaluations in March with both ENT/audiologist and Retinal Specialist showed that I had significantly lost more hearing and vision. My audiogram showed that I needed more than 120 db of sound to even register that I might have heard something. The line on the graph ran along the bottom of the graph and at times below the graph. In other words, I had been profoundly deaf, now I was even more so to the point of almost hearing nothing. Vision-wise, I had had a 5 degree field at HKNC. I now had 1 degree field with acuity in the remaining field very poor. My life was changing again. What I had feared had now happened. I would never be the same again.

How did this all happen? Well, again we aren’t sure what led to the additional surge of loss in February except possibly extended illness. My last few days at HKNC were spent learning more ASL vocabulary and practicing braille reading fluency. I had already mastered all of contracted braille and could read about 50 words/minute. I needed more practice to improve that. My print reading had been more like speed reading levels, so this is slow and annoying to me, but it is what I will have to deal with and improve as much as possible. On Wednesday or Thursday afternoon, I had a late appointment with my pulmonologist as a follow-up to my previous hospital stay. I left the doctor’s office at 5:45 pm with a clear lung X-ray having been taken and reassurance that I was well and good. After stopping to get something to eat on the way back to HKNC, I arrived at the residence hall at 7:00 or so. I headed down the hall to check in with the nurse, but she was still on break. There were a lot of people in the hall, so I meandered through them and then back through them speaking to anyone I could. I went into my room and booted up the X-Box for some video time and game play with husband and friends. I noticed that I began coughing, but I had no clue what was up. I used my inhaler a few times. I finally went out in the hallway and being able to talk still I asked one of the hearing staff if there was anything going on because I was having a little trouble breathing. They said everything was normal, but then offhandedly said the lounge is closed because they refinished the floors again. I couldn’t smell anything, but I knew that was bad. I said that is it. HKNC maintenance had tried to use the odorless glue, but that doesn’t help those with asthma. I had specifically told the Resident Directors that I could not be around when the floor was refinished again regardless. The odorless glues and paints just get rid of the smells they use to let people know that chemicals are being used. The harmful fumes are actually odorless. Natural Gas is actually odorless. They have to add chemicals with smell to signal gas leaks. I was angry, but I said I would go in my room, use my nebulizer, and keep the door close hoping that would help. The last place I wanted to go was the ER again. I tried these steps including nebulizing double doses twice. By nine, I was in full-blown attack. I called for the nurse signing “nurse” once again to the Path staff across the hall. Nurse came quickly and helped with the nebulizer, but she signed that I wasn’t getting any air. She signed for other staff to call 911. I was unconscious by the time the ambulance arrived. I vaguely remember falling to the bed and someone trying to hold me up. Later, I remember paramedics trying to put the airway tube down my throat. I went out again. They weren’t able to get the airway tube in at all. I had completely closed up. At the ER, I was put in the trauma section and was hooked to all of these monitors. I was listed as non-responsive. They told me later that I did scream when the staff hit a nerve in my wrist trying to get arterial blood to measure my blood gases. I was also later told that my oxygen level was very low and carbon dioxide and other gases that are supposed to be low were higher than normal. Pulmonologist said he had never had the same patient almost die in the span of just a couple of weeks or so. I was in the hospital until Christmas Eve. Doctor was not going to let me go back to HKNC until well after the first of the year. I was still very sick. Despite having a clear lung X-ray that same afternoon that I was admitted to the hospital, I developed pneumonia within less than 24. This was my second bout of pneumonia in a month.

My husband had been trying to get information about my health repeatedly during my hospital stays, but due to privacy laws, the hospital refused to give much information to him over the phone and only told my HKNC case manager that I was doing fine. HKNC staff never did realize how bad off I was either time, I don’t think. I even signed a form specifically stating that I wanted my husband and caseworker to be given full details of my status and treatment. With my husband being in Georgia and not having a home phone (only a school phone), I knew it might be hard for the hospital to get my husband regularly. My case manager would be able to pass on the information if she knew it. I have no idea what happened with that form. I signed it using an interpreter, but it was never put into force. The day before Christmas Eve, I finally got an HKNC staff member visiting me for a while. She helped me call my husband who being worried out of his mind wanted to know if I wanted him to come. I said yes. He quickly packed, got my younger son to stay with the dogs, and drove the rest of the day and evening. The doctor did decide to let me go home to Georgia if my husband was going to take me. I wouldn’t not have been allowed to fly. I was given enough meds and emergency nebulizer equipment to make the trip home and get through the Christmas Day and day after, and copies of all of my hospital and doctor records while in NY. Pulmonologist wanted my home doctors to know just how serious and dangerous my condition was to avoid future issues. My husband took me to HKNC where we packed up all of my belongings including computer and monitors and X-Box that still were not packed, since I had not been there. We slept a few hours and left just before the sun rose. I said good bye to the few residents and staff who were still there for Christmas. I was unable to talk well and didn’t feel well, but I did have a little surge of energy due to the excitement of seeing my husband after six months, being back with my Little Joe who had spent much of his days alone in the dark of my room, and the knowing that I was going home for good having accomplished what I had come to do.

The excitement quickly left me tired and drained as we began driving toward home. I slept all day and evening as Scott drove only stopping to eat, take bathroom breaks for us and Joey, and get gas. I remember very little. Scott seemed terrified. He told me that he was afraid that I would get worse during the trip and not know where to get me help. I just told him that God was with us, so everything would work out. It did. We arrived home after midnight early Christmas Day. After hugging my two sons and being happily greeted by my Hartley Girl, my black lab, Scott and I slept until noon.

I awoke to the smell of Christmas trimmings that my mom had made sure we had and a Christmas tree surrounded by presents. My chest hurt, and I felt like I could sleep for a hundred years, but I was so happy to be home that none of that mattered. Christmas that year couldn’t have been any more perfect. Nothing had changed other than me. No one else knew braille or ASL or even fingerspelling. Communication was still the main issue, but at the moment, all was fine. I just enjoyed the feelings of Love.

Now, of course, the feelings of love and peace at Christmas are wonderful, and you hope that it will last all year round, but reality usually does seep in eventually. By March, after my illnesses and loss of more hearing and vision, I found that now that I knew life could be better for me if people signed and adapted for my needs that I was even more frustrated when they refused or couldn’t. Depression hit me and hit me hard. I withdrew even from my beloved students and staff, and the newly founded DeafBlind Hope seem to almost languish before it even got started other than helping an initial three clients. Family issues grew even worse because I quit trying. Sitting in the chair suddenly sounded good to me, so that is mostly what I did for a while. It was over a year before I began to see a light as God worked within me and sent his earthly angels to lift my soul out of its depths of self-pity.

Arise slowly, I did. I haven’t looked back. There is too much to do.

Now as I finish my look back at HKNC. I hope many that I met there will see this somehow and know that what you did for me there was tremendous, and I will always appreciate your help and friendship. There were way more people that touched me than I could ever mention in my blog, and some didn’t wish to be mentioned at all, but you did touch my heart and will never be forgotten. God bless you all.

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Well, the weather has been frightful, but I have seen more snow than I have ever seen before. Joey has never seen snow before. We had a ball playing in it. Joey running and sliding and I throwing snow over him. He likes to try and catch it.

Joey in the snow making shadows.

"Joey in the snow making shadows."

Snow in the HKNC yard

"Snow in the HKNC yard"

Training has been more practice of all that I have learned so far. I talk in sign everywhere pretty much. Tactual is still my best mode. In most classes, we are doing the final goals and filling out requistions for my state to authorize payment. I don’t know if my state will pay for everything I need or not, but I hope and pray they do.

Jesus has been at work this week through me. I just hope I rose to the occasion as He wanted me to do. One of my instructors actually came to me after hours and asked me to tell her about Jesus. I was ecstatic. How lovely it was to share my love and experiences with her. In case you are wondering, this is not the same person that I have spoken of before. That person is saved and I can tell the person has faith. Jesus has something for that person to do and needs to prepare. The instructor that came to me this week is not from a religious family. She doesn’t know Christ and isn’t even sure there is a God. I hope that I answered her questions, but I hope even more that Jesus was able to work through my answers. I am praying mightily for her to feel Jesus. I can tell that the Holy Spirit is calling her. I just pray that she will accept that call.

We also had a holiday party that was actually a Deaf party. It was fun, but loud. I turned everything off and I left Joey at the center with my friend, Ginger. Basically, they have these very large speakers and some are turned down on the floor so that you feel the vibrations through the floor, tables, everything. I could feel the vibrations all through my body. The Deaf use the vibrations to dance by. It was very interesting.

A friend, Peter, in his Christmas tux and his SSP, Carol.

"A friend, Peter, in his Christmas tux and his SSP, Carol."

Saturday, we had another party at a Sportsman’s Lodge near the Long Island Marina. We at HKNC were invited, but it was mostly for the many special needs children from the area. I loved watching the children and adults of various ages with various forms of mental retardation playing and laughing. They all loved Santa and were so appreciative of the hand-knitted afghans we all got. I was too. Mine was a gorgeous lavender, purple, and pink coloration. I really couldn’t see the colors, but the staff described it to me very well. I like those colors. Many of the children wanted to pet Joey. Some were afraid of him, but as usual Joey was perfect with each and every one. He always seems to know how to act. With those who were afraid, he laid down next to them and let them reach to him. With others, he reached up and gave a big “Joey kiss” which is very special, you know. The children’s faces shined as Joey poured out his love for all of them. The others danced for a while. I enjoyed seeing everyone loving moving their bodies to the music in any way they could. I, of course, can always measure my fun level on a scale of 1 to full blown asthma attack. The party made it to full blown asthma attack. Lovely… Actually, what happened was I didn’t know that the lodge allows smoking in the building where they have a bar in the back. There was no smoking at the time, but I can’t be around it at all, so after a couple of hours I couldn’t breathe. We did a nebulizer treatment in the van on the way back to the center. I did a couple upon my return. I eventually got better without going to the hospital. I was very thankful. I have had enough of hospitals for a long while.

Here is the HKNC Christmas tree in the lobby. Next to it is the large paining done by a former totally deaf and blind student. The picture depicts the scene where Helen Keller and Anne Sullivan are at the well with water running over Helen’s hand as “Teacher” as Helen called Anne, fingerspelled “W-A-T-E-R” into Helen’s other hand. Helen’s says this is the moment that her world became alive with the true understanding of language.

HKNC's Christmas tree in the Lobby along with the painting by a DeafBlind student of "Helen's Well.

"HKNC's Christmas tree in the Lobby along with the painting by a DeafBlind student of Helen at the well.

This is a close-up view of that painting of Helen Keller at the well learning "W-A-T-E-R".

"This is a close-up view of that painting of Helen Keller at the well learning "W-A-T-E-R".

It began to snow late Saturday night and continued all day Sunday. I got to go to church with my friend and HKNC interpreter, Jessica. Jessica is 24 years old, but very spiritually wise. Her parents and Jesus have done a wonderful job with her. Jessica is Pentecostal, so her church service was a little bit louder than the ones at my Baptist Church. I loved it though. I couldn’t hear the music, so it was hard for me to worship like I normally do. Jessica though tactually signed everything for almost 3 hours so that I could experience things. That may not sound like a big deal to you guys, but interpreting is very tiring mentally and physically. Tactual sign is even more demanding. The interpreters have very strict regulations for when they are working. At HKNC, they do interpreter switches about every 30 mins or so, because it is so demanding of them. Jessica interpreted for me almost continually for about 3 hours. I asked her about half way through if she wanted a break, but she said she was fine. Jessica never complained. That was very special to me.

Well, the good news is that I am beginning my last week here. I don’t know when my flight is yet, but I hope it is Friday, 21st or Saturday morning at the latest. I will update here as soon as I know. That will probably be my last blog, too, since I will have to pack and ship everything before I leave out. The experience has been wonderful, and I have learned so very much. I have friends that I can call lifelong friends, as well. However, I am ready to get home. I have family, friends, and students to get home to. Things will be different, though. Signing has become my main mode of communication, so I hope a few of my close friends are willing to learn some. I am going to need an SSP or Support Services Provider, too. Hopefully, we can find someone to fill that role. Anyway, more on that after Christmas. I just want to get home now. Little Joey wants to play with his sister and brothers and give Daddy a big wet kiss. I do, too.

Take care, everyone!

Renee’ and Little Joey

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I have been unable to post for a while now. I became sicker and sicker with my asthma. I had a migraine for the week after Thanksgiving working on a speech I had been asked to do as keynote speaker for a technology seminar. I never got to give it, unfortunately. Saturday afternoon, I was found on my bed semi-conscious. I had evidently gotten up and tried to ask for help earlier, but I don’t remember it. Little Joe kept trying to push me up and licking my face. His urgency is what got me moving at all I am sure. I spent Saturday thru Wednesday in the hospital with pneumonia and exacerbation of asthma. I had IV antibiotics and IV steroids. I was back at HKNC for 5 hours when they had to return me to the hospital. I came back the next day. I am still confined to my bed and unable to speak because I don’t have enough air, but it is getting better slowly. I am still on steroids. I will say that my signing is getting much better because I have no choice, but to sign everything. I also was unable to hear anything since being profoundly deaf, I have to concentrate to understand. I was totally unable to do that. The hospital had to bring in a tactual sign language interpreter for me. I was able to do it fortunately. God does provide in all things. Pray for me as my chest still hurts and I am still wheezing.

Thank you Jesus for Little Joey.

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Retro Look:

This week has been really great. I received a care package from my Sunday School class at Mabel White Baptist Church, and my son, Brian, flew up here to spend Thanksgiving with me. The care package had several items that I have needed such as lip balm and warm slipper socks plus some fun things including sugar free candy and a red University of Georgia cap. The cap was a nice touch. I really appreciated the package. I have a pic where Joey somehow managed to get the hat on his head when I had laid it on the bed next to him. He was so cute. Joey knows how to make me smile just like my friends at church.

Brian flying in was a nice touch, too. He went to classes with me on Tuesday and Wednesday. He asked my instructors questions, and they taught him some signs. The instructors explained to him all about my training and what we could expect as my vision and hearing decrease. Brian was very attentive, and all the staff here said he was a nice young man. They were amazed at how polite he was and that he said, “yes, sir and no, ma’am” to everyone. I was extremely proud of him, of course.

Thursday, my case manager-Molly- took Brian, Martin (another student), and I to have Thanksgiving dinner at the Miller Ridge Inn. It is a replica of an old inn that stood on the property and the history goes back to 1632. They have a replica town of shops that you can walk through as well. We took pictures at the stocks and listened to the band playing guitars and banjos. The food was very good, even the stuffing was good despite not being Southern cornbread dressing. Molly is very special. She really went out of her way to be with us on her holiday off, and I greatly appreciate it. I could tell that Martin, though quiet, really enjoyed it as well. I don’t think he ever gets visitors. I seldom see him talk or smile except when he is talking about sports. Martin is deaf-blind. He hears nothing, but sees a little better than me. He signs for communication; therefore, Molly signed everything we all said during the meal. Molly made sure he was included in everything. That takes a lot of time and patience, but she does it so well. God is truly using her for special work.

Brian, Joey, and I standing behind photo props making us look dressed in long dress and tux.

"Brian, Joey, and I looking dressed to kill."

Molly and Martin in the stocks like prisoners.

"Molly and Martin in the stocks."

Brian, Joey, and I in the stocks.

"Brian, Joey, and I in the stocks."

That evening Brian and I took dinner up to our room where we had an e-Thanksgiving over the internet on X Box Live with Scott and Brendan at home on their X Box 360. Their food was much better than ours, but the company was great. We spent several hours eating and talking after praying and thanking God for our many blessings. Despite being here and away from friends and family, I actually enjoyed Thanksgiving. You never know what the journey God has you on will bring, but it will always be enlightening and memorable.

I am standing next to the image of Albert Einstein.

It's just Albert and I.

I have only been to the city one other time. This past Sunday, we went to Madame Toussaud’s off 42nd Street. We toured the wax museum and could feel the faces and costumes. I have some pics of Joey and me checking things out. The statues seem pretty real.

HKNC Students standing next to Helen Keller wax figure which is sitting holding a book that has braille dots on it.

"HKNC students with Helen Keller. The book she is holding has real braille dots on it"

This is Steffy. She feels the statues with her hands to “see.”

Steffy is feeling Robin Williams' wax figure in order to see him.

"Steffy is feeling Robin Williams' wax figure in order to see him."

Yes, some blind really do this despite the TV jokes you might hear. DB tend to do it a little more, but I would say it is only for people we really care about wanting to know exactly what they look like.
Friday, Brian and I left very early by cab to the Long Island Railroad. We took the LIRR to Penn Station in Manhattan.
Penn Station

"Penn Station"

Then took the red line down to South Ferry and Battery Park.
Battery Park

"Battery Park"

There we took pictures of the Statue of Liberty in the New York Bay.

Statue of Liberty

"Statue of Liberty"

This is my son, Brian, with the water behind him.

"This is my son, Brian."

 It was about 35 degrees plus very windy. We had wanted to take the boat past the Statue of Liberty and onto Ellis Island, but there was over an hour wait in the cold wind to get tickets. I knew my asthma could not stand that, and Brian said that it was even too cold for him who stays outside in tents 24/7. We took the pictures and headed back to the subway.
This was a weird sight on the way back. The city has overtaken some things.

There is this older, very small building right next to a skyscraper. It looks so out of place.

"This building just doesn't look like it belongs there.

We rode the subway north to Central Park and toured the Museum of Natural History during the very cold morning.

Natural History Museum

"Natural History Museum"

Afterwards, we ate at the City Grill, which was very good and reasonably priced. I had an Apple Walnut Grilled Chicken Salad similar, but much better than they serve at Applebee’s. My friend, Ruthann, would have loved it. I couldn’t help but to think of her as I savored its flavor. This break gave us all, including Joey, the energy we needed to walk through Central Park. I was really shocked at how beautiful it was, and it was very strange that it was in the middle of one of the world’s largest cities. There are several large reservoirs that they allow boating on. There are pathways galore all mingling around greenways for picnicking and play. There are huge rock outcroppings where children scrambled. It was absolutely gorgeous. We saw many places that we recognized from episodes of CSI: NY, including one that was in this week’s episode that I didn’t get to see until we got back that night and watched it streamed over the internet. The area was a couple of brick terraces overlooking the lake with the lower terrace having a huge fountain next to and overlooking the water.

Manhattan Cafe where we ate.

"Manhattan Cafe where we ate."

We exited the park onto 5th Avenue, which is lined with multimillion-dollar apartments along the Central Park border where rich financial executives and many celebrities live.

5th Ave apartments in Manhattan

"5th Ave apartments in Manhattan."

Strolling south of the park, you find the famous stores and their storefront windows filled with the most expensive and outlandish fashions that I have ever seen in my life. I assure you that I was not the least bit envious. I love my simple life and fashion. If no one else does, that is tough. I have better things to spend my money on like my children, husband, and beautiful students such as ShaynePatrick. They are what make life worth living. We ended the day after dark shooting videos of Times Square

and then walking down 34th Street to Macy’s. Brian grew up loving “The Miracle on 34th Street.” I think he found that some things are better just left for memories. After riding the LIRR back to Port Washington, we ate delicious NY pizza at a local pizzeria before taking the cab back to HKNC. We were all exhausted. Little Joe ate his supper and crashed on the bed with me beside him. I managed to give him a well-deserved massage before calling it a night.

I awoke early at 6:00 am to see Brian off to the airport. He had to be back at work at the wilderness rehab camp in Ga. by 5:00 pm that afternoon. I really loved the fact that he was willing to come up, and we had such a great time. I was reminded of those days after my divorce from his biological father when it was just the two of us. We were so close back then. I hope he felt some of that closeness this week. I know I did.

After he was gone, Joey and I curled up on the bed and slept until noon. I missed breakfast completely. Of course, I merely got up, took a shower, ate lunch, and came back to the room where I slept until dinner at 4:30 pm. I don’t remember ever sleeping that much. It was worth every minute of it, though.

I wasn’t able to make my usual calls to my mom, sister, and Aunt Pat. I really missed that. So, Mom, Traci, and Aunt Pat: I love you, and I hope you had a great Thanksgiving. I also hope my in-laws, Marsha and Aubrey, had a nice Thanksgiving. I love you, guys, too. There was absolutely no cell phone signal the last few days here. We haven’t even had internet service the last couple of days. We have to wait until Technology staff comes back Monday to get it fixed, so this post will be late.

As you can see, there was a lot to be thankful for this Thanksgiving. God is truly good to me. Some may say how can you say that when you are going deaf and blind, but I tell you that I see and hear God now more than I ever have before. Life is filled with heartache and disappointment, but with Jesus living through us, it is also filled with great joy and accomplishment. I love my Jesus with all my heart. I don’t ever want to live again without Him guiding me. He is the reason I bother to wake up every morning. He is the reason I am living. I can do all things through Christ who strengthens me. So can you! Take care this week. I am working hard to come home by Christmas, so keep praying for me. I really need the strength. There is still a lot to learn and overcome.

God bless you,

Renée and Little Joe

P. S. That special person I told you about last week who needed to find their way back to Jesus. Well, they made it to a church this past Sunday. This person almost changed their mind, but prayer helped to get them there. Keep praying for this person. God really has a plan.

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We are still looking back on my HKNC Training time.

Well, I know some of you are keeping up with my blog because I have gotten several e-mails checking on me, since I didn’t post last week. Well, I didn’t blog because I was in the hospital for a little while and then ordered to stay in bed for several days.

It was on Thursday afternoon when I returned to the residence hall for lunch. I looked on the way back to see if there were any smokers at the bench. That is very hard because I only see shadows with a little bit of color in the very center. Distance is not very far at about 20 feet on a good day with extreme blurriness. I did see one smoker on my way to the dog park as they call it here. I went “cross country” to take Joey to busy in the designated area. On the way back up to the residence hall door I looked, but I didn’t see any shadows that looked like possible people around the smokers’ bench. As I approached the door, I suddenly had a complete shut down. I couldn’t talk much less breathe. I turned around to see what might be causing it and finally saw a smoker about 5 feet from me. I saw a dark shape hanging out of where his face should be. I grabbed my inhaler as I went into the building. I couldn’t suck in the med. I managed to get my door open and pulled out my nebulizer, but I was struggling hard for air by this time and feeling a bit weak and lightheaded. I was afraid I was going to pass out. I went out in the hallway holding my nebulizer. I thought I would head down the hall to the nurse to get help, but I ran into the smoker right outside my door. He is totally blind and frequently gets disoriented since he refuses to use the mobility skills that he is being taught. He is a bit young and hardheaded like most kids his age. Anyway, I can’t even be around a smoker because of the smell off of their clothes, especially just after they have smoked. I turned around thinking to head into my room, but got scared as I almost fell. I went across the hallway to PATH which is where the mentally disabled deafblind live and work. They have to have staff with them one on one at all times. I knew there would be staff there. I couldn’t talk and most of the PATH staff is totally deaf anyway, so I signed nurse. Fortunately, that was easy enough, and they immediately ran past me to get the nurse. I went to my room to try again to get my nebulizer set up. I couldn’t see much of anything by this point. I kept trying to find the plug-in, but couldn’t. A few seconds later, the nurse arrived and took the nebulizer from me and got it set up and plugged in for me. I worked hard trying to get the med in my lungs.

After a while, I thought I was better. The nurse was going to help me over to the training building to sit with her for a while. We couldn’t leave yet because there were smokers in the front of the building, I sat in the lobby waiting. For whatever reason, I starting shutting down again. The nurse said she was going to get me to the hospital. She called my case manager to come take me there. I did another treatment, but it was not working. The staff made the decision to call an ambulance. I will shorten the story here, so I won’t bore you too much. I received a breathing treatment in the ambulance, five at the hospital, and two epi shots. Since I had had my normal breathing treatments before the attacks, I received a total of ten doses of meds. The ones at the hospital were more than my usual Xopenex, though. They had a steroid in them, as well. I was finally released late that night after a chest x-ray showed my lungs were clear. I was kept indoors all weekend long and missed classes Friday. Staff was told to take Joey out for me each time and my meals were brought to my room. They were instructed to check on me every hour 24/7. I got caught once trying to e-mail my staff to let them know that I was out of action for a few days. They “threatened” to tie me to the bed. OOPS!

I continued my breathing treatments every two hours around the clock until Sunday night. By Sunday night, I was feeling much better. Until the rain came in… About Ten o’clock p.m. My chest began to sting and then tighten up again. I felt bad all Monday, but I went to classes and did my best. I went to the nurse to nebulize every couple of hours or so. I got better as the front moved through. The rest of the week went fine health-wise until yesterday as another front moved in. I am nebulizing again every two hours, taking my Advair, etc. The chest hurts continually now as well as the sharp pain I get when breathing in. I wheeze when I exhale. I can’t hear it, but I can feel it. The nurse says I sound terrible. My face is pale, and I haven’t been able to put on enough makeup to cover the the black circles growing larger and deeper in color under my eyes. My doctor at home knows that I have been to the best Allergist and Pulmonologist in the state of Ga. They have told me that they have done everything that they can to help me. My primary doctor wants me to go to a Pulmonologist and and Endocrinologist (for my diabetes) here in New York to see if they know something my doctors at home don’t know. It is worth a shot. I sure don’t like living like this. Please pray for me. I don’t want to go home before my training is finished, even though going home sounds really good.

Thanks to a couple of very sweet and possibly, brave employees here, the smokers’ bench was moved away from the building and my pathway right after I was taken to the hospital. Val, my CLC teacher and good friend, and Mia, my case social worker who is fast becoming a friend by listening to me, went in to the head person demanding to know why I had to go to the hospital when the simple answer would have been to move the bench. I was told by someone else that Val was not nice or quiet about it. I appreciate it very much. It was nice to know that someone understood and cared. People just don’t seem to understand how serious asthma can be. It is very scary not to be able to breathe. Even today with all of our medicines, asthma kills many people every year. My case manager, Molly, and Vocational instructor, Elissa, stayed at the hospital with me. Molly rode with me and Little Joe in the ambulance and stayed until I was stable. Elissa came in and kept me company telling me all about her Jewish religion which totally fascinates me. Elissa is a practicing Jew. I admire her for keeping true to her beliefs when many Jews and Christians have made it just a part of their past or something they do on their Sabbaths. It hasn’t been easy for her either. Many people have treated her rather badly because of her faith. Anyway, I enjoyed her company.

Some of you may want to know where Joey was during this time. Joey stayed by my side the entire time. The EMT’s didn’t want to take him with us. They thought dogs weren’t allowed and tried to convince me that he would be scared by the sirens. Well, I know my rights. Southeastern Guide Dogs covered it well. Guide Dogs are allowed by law to ride in the ambulance with me and in the hospital. The hospital staff was fine with it and the dispatch assured the EMT’s that it was ok. Joey was perfect. He stayed right next to me with his head on my lap and let me scratch his ear. He didn’t move as the EMT had to get around him or when the siren blasted. In the hospital, he stayed near me except when they were working on me and then he watched intently from the side . When they were finished for a bit, he came back up to me so I could scratch his ear again. He is as much a therapy dog as he is a guide dog. The hospital staff from all over came down to see the wonderful dog in the ER. As usual, Joey was more popular than me.

Well, let me tell you about my training when I was in class. In mobility, I played around with a braille compass to help me find directions.

Braille Compass- directions are raised dots that the needle points to tell you where magnetic north is located.

"Braille Compass"

Natasha also showed me a tactual map used by the blind to navigate the NYC subway system.

NYC Subway System's braille Map

"NYC Subway System's braille Map"

Braille Subway Map with subway line symbols for stops

"Braille Subway Map with subway line symbols for stops"

Then I went around the building blindfolded without Joey just using my cane. There are sections of the training building that I haven’t been to yet, so that area was a bit confusing. I have an overview map of the building in my head that I use when I navigate the building. I can even figure out the general layout of certain parts I haven’t been to just by using the information that I do know about. I know that the training building is like a giant box with one main hallway that traverses the outside wall. One section of that hallway is where administrative offices are that I never go to. However, I can visualize its pathway by knowing that it connects with the other hallways on either side. There is also a section of the building that was added on to the corner of the backside of the building. I have been to that section on the downstairs part. Therefore, I know the basic outline of the section upstairs. I did pretty well navigating the building being blindfolded going slow enough to not hurt anyone if I ran into them. I can’t hear much regardless of wearing the hearing aids and FM. With residual vision, I can guess a lot of stuff. However, take that vision away and I might as well be totally deaf. Going slow keeps me from jamming a cane into someone’s leg or knocking them over. At one point, I became confused because of an alcove. I thought I knew which way to go, but I wasn’t confident enough to trust my information. I used my braille skills to read a few door plates and figured out that I had turned down Case Manager row which was exactly where I wanted to go. Case Manager Row is what I call the long hallway where all of the case manager’s offices are located. The first door I read didn’t make any sense to me. I was reading Debbie Hdj something or other. It didn’t make any sense to me, so I thought I wasn’t recognizing the braille. The next door said Pete somebody and I knew he was a case manager. Natasha clarified that I was reading the first name right, but she is an immigrant from another country, so her name didn’t have any vowels in it until after several consonants. I was reading it right just didn’t think so.

Natasha also showed me a different method than the one I know to go up and down steps. I wasn’t too confident with it, so I will explain it after we have practiced it again.

On Wednesday the 31st, we had a haunted house put on by staff and students. I don’t really celebrate Halloween, but I did go through it. This one was different. It was designed to be tactual for the deafblind students. They used silly string to help students feel the “cobwebs”, supposed food was all gooey and sticky. They used a cauliflower head to represent brains, modified olives to represent eyes, etc. They had balloons everywhere so the students would feel things as they walked through and lots of bubble machines to enhance the cold, moist feeling. Each student had a guide to help them through and interpreted everything to them in whatever mode they needed such as voice over into a FM system, tactual sign, braille communicator, etc. The entire script spoken by the tour guides (spooky sisters of the house) was signed and written in braille to be read. The name of the fictitious family was the Braillers after the name of the typewriter used to type braille. Several members of the supposed family were deafblind and had a curse put on them which had given them creepy special powers that they used to get revenge on others.

You get the picture. I know many of you do not believe in celebrating Halloween, but I wanted you to see how the staff brought the holiday to the deafblind. They worked hard on making this a fun event for all the students regardless of their disability. There aren’t many in the real world who would go to that much trouble. It was fun.

In Technology, I am beginning to focus more and more on the braille display as Bill taught me how to use the internet and a program called NexTalk that will allow me to use the TTY for phone calls. Telephone use is one of my biggest hurdles with the school. As many of you know, I do not do well at all. My staff are picking up a lot of my phone calls for me and will continue to do so, but there are times when I will need to use something. We are just going to have to keep working on that area.

I am learning my sign language in CLC. We practiced hand shapes and continued tactual practice. All of my communication is now in tactual sign language. My headaches are beginning to disappear as I get better at understanding. That is a very good thing. I would love to stop using my migraine medicine. In time, I hope I can. Migraines are not something that I am prone to have. My doctors say they come simply from trying too hard to see and hear.

Val took me to a grocery store here, too. We practiced using communication cards and the screen braille communicator to purchase what I need. I found that I need a couple of more communication cards in my book to cover some common questions. The SBC is going to work really well, especially as I get faster with my braille reading. Donna works with me to help me learn my sign vocabulary. Here is a pic of her in the classroom:

Donna, again, but she really did teach me an awful lot.

"Donna, again, but she really did teach me an awful lot."

I have a few more pics for you, too. My staff wanted to see pics of Ginger, my Vocational Evaluator.

 Joey loves Ginger. He tries to help her, too. He always wants to walk where he is between the two of us. Ginger has Multiple Sclerosis. She doesn’t let it stop her though. She whizzes around that building way too fast for anyone to keep up with.

Ginger and Joey

"Ginger and Joey"

It was a bit sad this week, too. My friend, Jane from S.C. went home for the weekend. She had asked me to pray for her because she was afraid if she went home that her family who has refused to support her stay at Helen Keller and wanted her home that they wouldn’t let her return. Well, that is exactly what happened. We do not know if she will ever return. I do know that she desperately wanted to get more training, so please pray that God will open the hearts and minds of her family.

Shelby and I saying goodbye.

"Shelby and I saying goodbye."

Also, my friend, Shelby from Atlanta, went home yesterday. She wanted to stay as well, but Ga’s Vocational Rehab didn’t want to continue paying for training. Shelby is 27 years old and almost totally deaf and blind. She is intelligent, but was poorly educated. She is quite capable of learning, but needs to catch up. The state didn’t want to pay anymore right now. Shelby had been here since May.

Joey waiting for me to leave a class.

"Joey waiting for me to leave a class."

This is Joey waiting on me to get ready to go to another class. Isn’t he cute?

Well, I have just about covered things for now. Keep praying for us. We are still praying for you, as well. I have a meeting with everyone on my team and Scott, my husband, by phone on the 16th. Hopefully, I will be able to let you know when I will be coming home and a report of my progress. Until later, keep praying

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Still looking back to my time at HKNC. This post was made the weekend after Veteran’s Day in October 2007.

This has been a whirlwind week. I got a new schedule change on Tuesday. Of course, Monday was a holiday, and HKNC was closed. I stayed in the residence playing my bible .mp3’s and listening to music until time to play Xbox 360 with my husband and “friends”.  I have a difficult time understanding audio files and music files, but I will keep on trying until there is no sound to hear. Before Scott and I play Halo 3 and other video games we always meet in video chat. We both have web cams connected to our Xboxes, so we can see and talk to each other. We go over mail and other occurrences of the day. I also teach him a few signs. Here is a pic taken from the Xbox, so you can get a better idea.

"Scott and I talking over X Box Live Video Chat"

"Scott and I talking over X Box Live Video Chat"

In Technology class, Bill taught me more about OpenReader. This is a software that will read anything it can scan. It uses flatbed or automatic document feeders for multiple looseleaf pages. On a flatbed scanner, I can put a textbook. It will scan the pages and then read it to me. Then a student would be able to ask me a question about a specific section or I could further explain to them the topic they had read and not understand. I can even go into edit mode and add additional text to specific places on the page. I can read a certain paragraph, sentence, line, word, or even letter. I can even turn the page into braille and emboss with a braille embosser (printer). I can save the pages and print them in various ways including any additions I added for the student, for instance. I like the fact that I can do all of this with the braille display and never hear or see anything and still “read” what is on the page. All the text is printed out on the braille display as well as read by JAWS. I will always be able to use this program. We also finalized all plans for the rest of my training and specifically for the Evaluation meeting on Friday, the 16th. I will tell you more about that later.

In mobility, Natasha went over stairs again with me. I did blindfold with only the cane. Natasha holds Joey out of harness. I found the stairs fast enough. Once in the stairwell, I used the cane to find the upstairs by sliding the cane until it hit the step. I used the cane to slide the length of the stair to see how wide the staircase was. Then I measured the height of the step by lining the cane vertically to the step and and then sliding the cane while in contact with the step until the cane rested on top of the step. I then measured the width of the tread by sliding the cane tip back until it hit the side of the next step. This gives me plenty of information to help me place myself on the steps safely. Then I extend my cane hand out horizontally with cane vertical and lock it straight. This allows my can to hit each step as I go up the stairs. When I no longer hit another step, I know the next step will be the landing. When I get to the landing and before I step up, I clear my step. That means that I make a short arc just a bit wider than myself and straight back to between my legs to check if there is a hole, object, or whatever in my way. I wouldn’t want to step on those items we tend to leave at the top and bottom of stairs for carrying later. Now going down, Natasha had shown me a different method than I had learned before. I actually felt that when I got it down that I would like it better because I never feel quite sure that I am at the bottom level with the method that I use. My previously learned method which has its advantages is about placing the cane in the hand opposite the railing and then placing it at the edge of the top step across the body at an angle. I then remain in constant contact with the stairs as I move down. The cane slides across and down each step helping me to feel a little safe, but I never know for sure if I am at the last step or not. I have misjudged before and fell. Natasha’s method when done correctly lets me know when I hit bottom. You hold the can in your hand opposite the railing. Place it on the next step down hanging over the edge. Then pick it up slightly holding it vertically and your arm straight and horizontally. Then you walk down the steps. When I hit the floor of the landing, I know the next step will be that landing. I don’t have to be worried if I judged right. I practiced several times until Natasha was comfortable with me doing it safely. We will revisit it again for practice.

In Vocational, Ginger and I emailed Perkins school for the Blind and their division for deafblind early childhood education. We had for specific help and a curriculum for my 6 year old deafblind child, ShaynePatrick. They have gotten back with me and will begin to work intensively on teaching me how to work with him better the Monday after Thanksgiving. I am very excited. I love the blonde curly-haired boy. He is so delightful and very intelligent. Here is that promised pic of Ginger and Elissa. Elissa is back and doing better.

"Ginger and Elissa preparing for my evaluation meeting."

"Ginger and Elissa preparing for my evaluation meeting."

Wednesday was a full day in CLC-communications. I have almost every teacher in the department now as they intensify their emphasis on sign language. I also have Lois then for Braille in the afternoon. Amy is my new instructor. She worked with me on the grammar and syntax of sign which has a lot to do with facial expression. I worked so hard trying to get my eyebrows to go up for yes/no questions and crunch into wrinkles for the 5 w’s and how questions. I actually got a cramp between my eyebrows. Toward the end, I couldn’t hold the eyebrow position to complete the entire sign. We all laughed so hard.  Good imitations…

My case manager and I told each other stories in total sign and no voice. It is a lot harder than it looks. My kids would be embarrassed if they knew which stories I told.

Now for the best two stories of all.

I will start with the all important meeting. Most of my instructors were there and Scott, my Vocational Rehab Rep and her staff, and Barbara Chandler, the HKNC Southeast Regional Rep were on the conference call with us in the meeting. I could not hear the phone or much in the room, so they had an interpreter with me doing tactual sign. My VR rep is totally deaf along with one of her assistants so we heard the same male interpreter voice for them. My instructors and I told what I had been doing so far and what requisitions they would like for the state of Georgia to pay for. I have to admit that my VR rep is starting to sound like she is backpedaling on her promise to get whatever Helen Keller recommends. She kept stressing that they would only pay for what is specific for my job. I can assure you that that is all that I have thought about. I need no help cleaning my house or cooking for myself. I can do that even totally blind and have proven it. However, I do teach several of my special needs students how to cook, wash clothes, etc. I specifically asked Independent Living to show me ways to teach students to cook in the safest manner for me and them. I don’t want to get them burned if I am trying to teach them to cook. I also have to wear light filters (sunglasses) indoors and out because I am extremely light sensitive. I teach my special needs students indoors and out. I even teach them how to swim or do water therapy. I can’t do that without my glasses. HKNC has the only ones that I have found that really work. I pray that God will help them to understand why I need all of these items regardless of cost. He knows how much debt we are in as a family because we have had to purchase so much ourselves just to get me as far as this.

The other part of the meeting was when do they expect me to finish my training. Well, all of my instructors agreed that if I continue to do as well as I am now I will be able to go home a couple of days before Christmas and not have to return!!! I am so excited. Sign language is the only area that I am worried about, but my instructors are saying that I am being too hard on myself. They say I could sign so much better even now if I didn’t get so nervous. I will definitely work hard to finish my sign in time.

Well the other neat and to me best part was a conversation that I had this week with one of the people here. I will not say her name, position, or even when I talked to this person because this was a very private conversation. However, God was definitely in this. The first week I was here I talked with this person. I was crying a lot, but God kept whispering in my spiritual ear that I needed to be ready to help this person. He has something for this person to do and some place for this person to go. He needs this person to allow Him to get them ready. Personally, I didn’t want to hear that then. I actually told Him, “Please God, not now. I just want to go home.” He seemed to reply, “I know, Child, but soon you need to be ready to listen.” Well, I did get ready to listen after a few days and have waited to see if He had something for me to do. That time came during this week. I was talking to this person again about HKNC stuff for me, as usual. I heard His voice say mention my name. I was like what? How? I thought (you take a wild guess how) and said, Jesus is where I get my strength. This person looked so funny and said, “I just thought that same thing.” Anyway, we had a long, long conversation about this person’s belief in Jesus. This person is a Christian, but since working at HKNC and living where they are, they had strayed. Again, I heard God say. I have something for you to tell them. They have already been feeling this, but need you to tell them it is from me. I simply said. It is almost time for you to go somewhere else. God has a plan, but you aren’t ready. You need to go back to church, and you need to begin studying my word again. This person was quiet for a few minutes. I was trying to see what the person was doing but couldn’t. Finally, they said I’m crying right now. In the last few months, I have been feeling like I need to leave. I have been feeling like I need to go back to church. I even went recently, but then got nervous and turned back around. I am going this Sunday, I promise.

There was more to the conversation, and I got to really see how God has been working in this person’s life both in the past and recently. As far as I go, I have made a lifelong bond with person. I know it. We will be friends no matter how far apart we are. God is sooooo awesome! How awesome is He!

I am going to leave it at this for now. Joey is fine. He is learning to force me to walk slower so I don’t wheeze. You can’t get any cooler than that! I love you guys, and I will work hard to be home for good by Christmas.

Renee’ and Little Joe

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