CHRISTMAS IN HEAVEN

This is a short essay that I posted in 2013. It's my idea of what Christmas is like in Heaven. It might seem juvenile to some of you. If you're like me, it's at this time of year, that you miss your loved ones in Heaven the most. The thought of my mom and grandma assisting in preparing a feast in Heaven brings me comfort.  if you are missing a loved one, I hope it brings you comfort too.

My grandma would make cookies and pies. My mom would make her, green bean, and spinach casseroles.

The planning for Christmas in Heaven begins months in advance.  Everyone’s given a job based on whatever unique and special talents they possess. The chapel is given a fresh coat of paint.  The chapel has beautiful stained glass windows...Each one depicts a Bible story.  They are washed until they sparkle.  All the decorations and ornaments are checked to make sure that none are broken. A Christmas tree adorned with white twinkling lights will stand inside the chapel entrance.  Every year, the tree is so high it almost touches the ceiling.  There is just enough space for the angels to place a solid gold star on top of the tree.  A crystal nativity is placed underneath the tree. 

The music in Heaven is magnificent.  Choirs practice daily.  The angels play their harps with the other musicians until the music and voices blend together perfectly.

Everyone gathers in the chapel, at midnight on Christmas Eve, to hear the story of the birth of Jesus.  Each person is given a candle upon entering the chapel.  By the time Silent Night is sung, the chapel is illuminated only by candlelight.

 Angels sound the trumpets on Christmas morning celebrating the birth of Christ.

There are no presents because being in Heaven and part of God’s Eternal Kingdom is the greatest gift one can receive. However, everyone does get a new robe made of the finest silks and brightest colors. After a short service in the chapel, there is a large feast.  Because there are people of all nationalities in Heaven every food imaginable is served.  The cooks have been preparing the menu for months.   Each year, all agree, that year’s feast was better than the last.  Each person at the feast is asked to share a memory of a special Christmas on Earth 

The part of the day that all our loved ones in Heaven look forward to the most is the time they get to spend with their families on Earth.  Those we love never really leave us. They see and hear everything we do. , If you feel a gentle breeze touch your cheek or feel a slight touch on your shoulder, that's a sign that your loved one is with you., 

I want to wish you a joyous Holiday season.  May there be Peace on Earth for us all.

THE WEATHER OUTSIDE IS FRIGHTFUL

When I was in elementary school if there was ice or snow on the ground, my school bus could never make it up the hill to my house. My mom would drive me to the bottom of the hill where we'd wait for the bus. Sure, there was heat in the car, but it was still not very warm. My mom would call the street department every year and explain the situation. It took years, but finally, a truck put salt on our street.

When I was in college I would have to wait for people to open doors for me as automatic doors were only a dream then. I would get very cold if there was no one around and I had to wait for someone to come help me. On the plus side, It was a good way to meet people.

I don't like having to wear heavy coats (or in my case capes) because I have to ask people to help me take it off and put it back on. I try to dress in layers and not wear a cape whenever possible, but sometimes it's too cold to go without my heavy cape.

My power chair doesn't go through snow very well. If the wheels get too wet the tires just spin.  One year, after it had snowed, I wanted to walk to the library because it was my day to volunteer. I didn't realize how snow-covered my street was. The library was just across the street. We could make it. My caregiver and I started out. We didn't get far when my chair got stuck in the snow its tires spinning.  My caregiver tried, but couldn't budge the chair. Luckily, my neighbor saw us and helped me down the hill.

Cold weather never bothered me when I was younger. The older I get, it seems, cold weather bothers me more and more. I get cold much faster now and it takes longer for me to get warm again. I cannot imagine having to wait in the frigid temperatures we've had for public transportation, but i know there are people with disabilities who do because they have no other choice.

Winter weather may force people with disabilities to stay home because it's just too difficult to get around. I have cut my days at the library to one day a week until spring.  I'll be home more, but I'll keep busy writing, reading and playing games on Facebook. I'll volunteer at the library wham the weather is good.

Snow is pretty, but to someone with a disability is just another obstacle, another challenge. winter has not officially arrived, but I'm already asking, "How many days till spring?". 

BLESSINGS

Yesterday afternoon, as I listened to the wind howl and the rain come down in sheets against my windows, I was thankful for the phone call I received from my brother that morning, alerting me to a possible tornado threat. When  I had checked the weather earlier, the threat of a tornado wasn't mentioned. I was thankful that my caregiver was able to stay with me throughout the storm. I was thankful that my neighbor phoned to check on me. As disabled people, we like to say that we live independently. The truth is, the reason we are able to live independently, is because of the support system we have in caregivers, our family and friends. Without, a good support system, our living situations would be completely different. 

I'm thankful that the only damage I had was tree limbs down. I saw the devastation caused by storms that plowed through parts of the Midwest. I can't imagine what it's like to lose everything in a matter of seconds. One minute you have a home, the next minute you don't. The only positive thing about the situation is that you are alive. I pray I never experience that kind of loss. My heart goes out to everyone affected.

I don't remember many storms like the one we experienced yesterday. The rain passed quickly. The strong wind gusts lifted up the metal awnings on my house.  They came down with a bang. We sat listening to tree limbs snap and fall to the ground. We wondered how long it would last. The winds finally calmed and it turned out to be a beautiful Sunday afternoon.  

This Thanksgiving, I am thankful for all the people who make it possible for me to live independently. I'm thankful that I have a home and that I am safe. It might be silly to write this, but I think sometimes we need to be reminded just how fortunate we are.  That's what the storm taught me. To appreciate and be thankful for what I have. It showed me just how truly blessed I am.

FIND YOUR PASSION

I haven't posted a blog in quite a while. That doesn't mean I haven't been writing. I have been making revisions to another children's story that I hope to publish next year, as well as putting in a few more hours volunteering at the library.  I submitted an editorial to The St. Louis Post Dispatch on the Cost of Living Adjustment for 2014, 

When it was suggested to me that I give my thoughts on this subject my first thought was that I was not qualified. All I knew was that the COLA would below, which meant retirees, and people with disabilities would receive less money in the coming year. How could I write 700 words on a topic I knew so little about?

I went to the reference section of the library. I got the information, I read.  I learned about the Cost of Living Adjustment, Consumer Price Index, and inflation. I began writing my article. I have bouts of depression at times. I noticed as I was writing my article, I began to feel energized. I had a purpose which was to write an insightful article. I hope my article makes the paper. If it doesn't, I am still happy I had the opportunity to write it.  I wrote about something well out of my comfort zone and I learned a lot in the process. 

Writing gives me a purpose. Sometimes, it’s the reason I get up in the morning. I'm working with an editor on my second children's book. I'm always excited to see their suggestions on how my book can be improved. 

I may get a little obsessed with my writing. That's because it is so important to me. I want what I write to be worthwhile. I hope that people who read what I write will learn something they didn't know before.

It's important for everyone to have something in their lives they are passionate about. It just makes you feel better. It's something to get excited about. It's something to share with others. I have met many wonderful people because of my book and blog. It's fun meeting others with whom you share a common interest.

I love writing. I love books. These are my passions. What are yours?  

OUR FUTURE

I was saddened to learn that the increase in Social Security for 2014, will be the lowest since nineteen seventy-five. About one point five percent People with disabilities and senior citizens depend on their Social Security and Supplemental Security Income Checks to live. I love my country. I am proud to be an American. We are a nation always willing to lend a hand to other nations,

to help them learn to live in peace. Sometimes, though, in our willingness to help others, we may forget that there are people right in our own backyard who need help 

How can the increase be lower when the cost of food and utilities keeps rising/? I’m worried about the future of Social Security, and Medicaid. If these programs disappear in the future, what will happen to the disabled and seniors who depend on them to live independently? If I were to go on Medicaid, I would only be given approximately six hours a day attendant care, five days a week. I need 18 hours a day every day. I would probably be placed in a nursing home.

A friend of mine, on Medicaid, once had to wait several days to have their medications refilled because their social worker was out of the office. This same friend needs some new equipment to assist them in their personal care. They have been trying to get in touch with their social worker, but the social worker has not returned my friend's calls.

My parents worked hard and saved their money because they knew I’d need care to live my life. I wish there was a program that would pay part of my caregiver expenses so that my funds could last as long as possible. When I told a social worker that's what I was looking for she said, "No agency is going to help with something like that." 

Services for the disabled and seniors need to be improved not cut. No one should have to wait days for their medication because a social worker isn't available to sign a form, or too busy to return a phone call. No one should have to risk depleting their funds trying to live the best life they can.

I am worried about our future. I hope that programs and services for disabled and senior citizens will be better in the future. The programs and services that have been cut will be restored. Maybe that's wishful thinking. Something needs to be done so that all of us can live the life we want and deserve.

IT'S COOL TO BE A DIVA

A reader suggested I change the name of this blog to Confessions of a Disabled Warrior. I can understand why. People with disabilities fight battles every day.  They fight to be accepted and respected by society. They have to work twice as hard to prove that they are as good as everyone else.

They went on to say that if they didn't know me and they were surfing the internet and saw my blog title they would ignore it because the title wouldn't grab their attention. Because I want to expand my readership. and because I value this person's opinion, I thought seriously about changing my blog's name.

I always thought Confessions of a Disabled Diva would be the title of my memoir. Since I haven't started writing my memoir yet, when I got the idea for this blog, it seemed like the perfect opportunity to use the name. It 's cute and catchy. However, until a few weeks ago, I had no idea what the word diva really meant. One Sunday afternoon I found out.

The word diva is typically associated with opera singers and other famous singers, Divas are people who'll do anything to get what they want, not caring who they hurt or what it cost them. I also read something about a diva being a woman who's into high fashion. None of these definitions describe me. I love to shop, does, that count as being into high fashion?

There was one definition I read that I liked. A woman who achieves success through hard work and determination can be thought of like a diva. I am determined to have this blog reach as many people as it can. It's happening already. I have readers from all over the world. I'm amazed.

Author J.K. Rowling is a diva. Harry Potter was rejected countless times by publishers. Rowling did not give up until her manuscript was accepted by a publisher

I'll keep the name Confessions of a Disabled Diva. I have to be honest, it's cool to be called Diva by someone who knows me and reads this blog. When you think of the word diva in relation to this blog, remember the definition that spoke about hard work and determination because that's the kind of diva I am. 












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HELP WANTED

Disability Employment Awareness Month is celebrated nationally during the month of October.

In nineteen forty-five, Congress passed a law making the first week in October "National Employ the Physically Handicapped Week." In nineteen sixty-two, 

Congress dropped the word physically from the name of the law so that people with all types of disabilities could be included. In nineteen eighty-eight, the name was changed to its current one, and the week was expanded to a month. This year's theme is "Because We Are EQUAL to the Task.'

Those of us with disabilities, who are able to work,  want to work.  We want to contribute to society. We want to feel good about ourselves.  We want to know that we are making a difference. Our skills and ideas need to be utilized in the workplace.

 All it takes is for employers to see past a person's disability and give them a chance to prove themselves. It also takes a willingness on the part of an employer to make the "reasonable accommodations", to enable a person with a disability  to do their job effectively  

The staff at Meramec gave me a chance.  I developed a class.  The college's continuing education department saw how my class could be an asset to the department's curriculum. I taught that software class, part-time, for sixteen years.

I encourage employers to give a person with a disability a chance. They will work hard.  They will be one of your best employees.

I hope that someday the need for a month devoted to motivating employers and making them aware of the ways of hiring someone with a disability could be an asset to their company, will be a thing of the past. That we'll all be looked on as equals and be hired because we're the best person for the job.

I GOTTA KEEP ROLLIN'

I began using a power chair in high school.   My eighth-grade teacher was disabled and a former student of my school.  She used a power chair for a while. When she didn't need it anymore she left it at the school. I was fortunate to be the one who was given the opportunity to use it at school. The freedom it gave was indescribable.

In my senior year in high school, my mom and I began looking into getting me my own power chair. I remember when they brought one to school for me to try out.  It was a chair from England.  I had that chair for many years. I had very few problems with it. When I needed a new chair the chair from England was not available in the U.S. anymore.  I guess it was too costly to bring to the States.

Shopping for power wheelchairs used to be like shopping for a new car. You were given the opportunity to see and try out a variety of different chairs and choose the one that best suited your needs, it is not that easy today.  

Today there are no more wheelchair showrooms. You are shown pictures instead of the actual wheelchair.  Your need must be verified by your physician   If you want a new chair the vendor selling the chair must prove to your insurance company that there is a medical need for the chair you want. A twelve-page form must be filled out and a physical therapist must come out to your home to assess your needs. If it's proven that the chair you want does not fulfill a medical need, you will be denied the chair you requested.  You may be sold a chair that is more cost-efficient for Medicare/Medicaid. 

I have had the same power chair since nineteen ninety-nine.  It's nothing fancy. In fact, I have been told that the design is a manual chair with batteries and motors attached. I like the chair because it is not that big and heavy.  It works well in my house. I desperately want a new chair, but I want the same model or as close to what I'm using now as possible. 

The manufacture of the chair I want is in a decent decree with the FDA. The manufacturer failed to follow the proper rules and regulations as set forth by the FDA.  While the FDA reached an agreement with the manufacturer in December 2012, vendors are still not allowed to sell the chair I want because (from what I gathered from my research) the manufacturer has not passed audits and inspections subject to the approval of the United States District Court of Ohio.

I keep being put off.  First, I was told everything would be settled in June, then September and now I was told, hopefully, January. I don't really care what rules and regulations were broken by the manufacturer. I care that because they are not fixing their issues in a timely manner, I, along with many other disabled people, cannot get the chair we want.  Because my chair is old, the motors could stop working and at any time.  I pray that it doesn't happen before I can get a replacement chair.

Those who make the rules at Medicare and Medicaid, as well as those who manufacture wheelchairs, don't spend eighteen hours a day in them. Give more control back to the consumer. Think about what's best for the person,, not just what's cost-effective. I was told couldn't get a softer cushion because I don't have any skin breakdown. Rather than letting me have a softer cushion, to prevent me from getting pressure sores, my insurance company will only allow me to have a different cushion if I have a problem. What sense does that make?

Insurance companies should be concerned with the comfort and well-being of individuals using wheelchairs, not just what's in their best interest.  





  

WE STILL HAVE A LONG WAY TO GO

It was a beautiful day.  The sky was blue and the temperature was in the seventies with a light breeze.  A perfect fall day.  I was happy because I'd had a book signing at a friend's bookstore.  A couple of people came in and bought my book and three had been sold since the last time I'd been in, making a total of five books sold. It had been a nice afternoon visiting with Robin, the owner, and selling books. The perfect day until ... 

My caregiver and I decided to go out for dinner to a well-known seafood restaurant.  We were taken to a table. A few minutes later our server came and asked what we would like to drink.  I always have a glass of wine if I go out to dinner on a Saturday.  I told our server the wine that I wanted, at which time, he glanced at my caregiver with a look that asked, "Is it okay for her  to have wine?"  My caregiver nodded that it was and our server brought my glass of wine.

This may not seem like a big deal, but every time an incident like this occurs, I'm reminded that there are still some people who view me as different from everyone else.  People who see the wheelchair and make assumptions that I can't think for myself.That I wouldn't know not to order a glass of wine if there were some medical reason why  I shouldn't.

Several weeks earlier, we were at the same restaurant and our server was speaking to my caregiver about my order rather than to me.  I asked our server to speak to me directly.  I was clear about what I wanted, but our server brought the wrong salad.  My caregiver told our server that I wanted shrimp in my salad, not chicken.  Our server offered to make another salad, but it would have taken too long.  I ate the salad with the chicken in it.  The good news, I was given a free dessert because of the error.

Disability awareness and sensitivity training workshops or speakers should be made available to anyone who is a restaurant employee. I don't know how realistic it is to expect managers to provide this kind of training.  I just know that it's needed. .I'm asking anyone reading this post, who is employed at a restaurant, to always remember to treat a person with a disability with the same dignity and respect that you would show any other patron you were serving.  Listen to them.  Don't assume that just because they have a disability, they can't think and speak for themselves.  

I always think we have come a long way.That people have changed their opinions about people with disabilities. That they know we're just like everyone else. We just do some things differently. Then, an incident happens, like the one that happened last Saturday,and I see, while we have come a long way in the acceptance of people with disabilities, we still have a long way to go.

THE MISS AMAZING PAGEANT

This video was featured on The Today Show.  http://www.today.com/news/miss-amazing-pageant-puts-girls-disabilities-first-8C11101506  It made me cry.  I saw young girls and women with disabilities competing in a beauty pageant.  As the contestants walked and rolled across the stage,. they were radiant not only in beauty but in confidence as well.

The pageant was started by Jordan Somer, who had been in pageants herself when she was younger. Competing in pageants taught her self confidence and commitment.  She learned that success wasn't about coming in first, but rather, about taking control over who she would become.  Ms. Somer has also worked with the Special Olympics where she saw first hand the determination and commitment of the athletes.  

Miss Somer wanted to share the pageant experience with girls who had disabilities. The first Miss Amazing Pageant was held in Nebraska in 2007.  The only requirement is that contestants give five cans of food. The first job of the pageant division winners is to distribute the cans of food to homeless shelters.  It's a way for the girls to be involved in their community and to learn about the importance of helping others and giving back.

The pageant builds self-confidence and self-esteem and promotes the inclusion of girls with disabilities in their community. Through the encouragement and support of the pageant organization, the girls strive to reach their full potential, to be the best that they can be in life.    Girls in the pageant learn they can set goals and achieve them. When I was watching the video I saw how proud and happy the contests were. They knew that they were just as good as anyone else.

http://missamazingpageant.com/about/

MY ROAD TO (PART TIME) EMPLOYMENT

I graduated from The George Warren Brown School of Social Work in nineteen eighty-two. In my last year of graduate school, I had two internships.  

My first internship was at a local children's hospital.  My boss took me on in the hopes of getting me a job as the social worker for Shriners Hospital.

In the 1980s the children's hospital was providing a social worker for Shriners. I met with the social worker at Shriners every Friday.  I had a good rapport with all the patients.  That stemmed from the fact that I had been a patient there.  The children knew that I could relate to what they were going through better than anyone else.  I led a weekly group for teenagers where they could come and share their feelings about being in the hospital. I enjoyed it immensely.

 Unfortunately, Shriners would not consider hiring me because I hadn't had two years of work experience.  When my boss at the children's hospital learned this she wouldn't give me any other responsibilities. Other than making phone calls to remind parents of their child's clinic appointments, I did very little.  The internship was supposed to last for two semesters, but my boss ended it after only one.

My second internship was at an organization that offers health care to low-income families. I was an intake worker.  My main job was to assess a client's needs and refer them to the appropriate place. I mainly gave out vouchers for food and bait to catch rats. The organization had no funds to pay me; however, they did offer me a volunteer position. I declined.

I was home for two years after graduation.  I sent out resumes and took the state tests but the only jobs I was ever offered were the jobs no one else wanted.  Night jobs and jobs at psychiatric facilities.   The last interview I went on was at a psychiatric hospital.  The position involved working with adolescent girls. When the interviewer asked me what I would do if one of the girls turned my chair over, I had no answer  The interview ended.  

I have shared in a previous post how I got my job at Meramec. An instructor gave up his lunch hour to teach me and other young women with disabilities word processing. The other two quit, but I stuck with it.  I saw a need for individualized instruction, especially for older adults, while volunteering in the computer lab. With the support of those in the lab, I developed the syllabus for the class and presented it to the dean.  The funding for my class almost got cut after the first semester.  Luckily that didn't happen The dean made sure I had a job, with Continuing Education, for as long as I wanted one. I retired in 2005 

I  tried to get a job as a sales rep for a well-known greeting card company.  The rep for the area was in her nineties.  She did almost everything out of her house and on a computer.  She told me the job would be too difficult for me during our phone conversation.   She did not afford me the opportunity to meet with her in person.

I'm now trying to become a freelance writer/journalist.   There may be rejections along the way. That's okay.  I just have to be patient. I know that it will happen.

LIFE'

I was going to take time off from blogging.  I didn't think I had anything of value to tell you. After deciding this, I received emails from several people asking if I was okay.  I guess I didn't realize how much all of you look forward to reading this blog.  I decided to write about what's been going on in my life for the past few weeks.

Almost two weeks ago, on a Saturday morning,, after she had coughed all night, I was prepared to have Lucie put to sleep.  She was coughing, shaking,, breathing rapidly and pacing, unable to sit still.  Two days prior to this, I had taken her to the vet because she'd gotten sick and was refusing to eat or drink and breathing rapidly. She was on oxygen at the vet for a while.  She was put on a third medication which I'm told will give her three good months, possibly six.  The vet said he would try the new medication on his own dog.  He thought Lucie would do well on it.  Anyway, that Saturday morning  it was clear the medications were not working.  I felt there was only one option left, to take her to the vet to be put to sleep because as much as I want Lucie with me,  I never want her to suffer.  My neighbor was going to follow my caregiver and me to the vet. She and I would stay with Lucie until the procedure was over. Arrangements were made.  I was trying to come to terms with the fact that I only had a few more hours with Lucie.  All of a sudden she was barking and waiting patiently for a doggie treat.  She was given her medications and has been doing well ever since.  August 18th was her 14th birthday.  A friend said, "Lucie has nine lives like a cat."  I'm beginning to think she's right. 

One of my caregivers, who works during the day, is always calling and complaining that she does most of the work.  She complains about what the other caregivers haven't done.  She has called the agency on my other caregivers numerous times.  The other two caregivers work mainly at night.  I don't expect anyone to do housework at night   Today she called again. After the call, in which they offered to replace her, she and I talked. I told her what her duties were. I told her she can't keep calling the agency because they are getting tired of it.  She likes working for me and wants to stay.  I told her to worry about doing her job and not what other caregivers are doing.  If she has a problem we'll talk it out.  I hope the situation is resolved. 

I almost lost a friendship because I spoke my mind.  It was thoughtless and I regretted what I had said immediately. Not one of my proudest moments.  I thought about omitting it from this post, but it was part of what was going on in my life so, I included it.  There were a few days .when I didn't think we'd work things out.  Thankfully, we did

I guess the message from my experiences over the past weeks is whatever difficult times you may be experiencing right now, know that you are strong enough to get threw them. And also, that you are not alone.  Everyone struggles, just in. different ways

Thank you for reading my blog and for caring about Lucie and me.  Until next time.  

PERSEVERANCE

I play a game on Facebook called Word Tornado.  It is really just a fancy name for Scrabble. The only difference between Scrabble and Word Tornado is  Word Tornado has a time limit. You have a little over a minute to create a word with the tiles you have been given.  If you fail to do so you lose your turn.  I like the fact that the game has a time limit.  It makes the game more challenging.  

When I first started playing I didn't score well at all.  I was determined to improve.   I didn't let the fact that I scored low deter me.  I had been playing for months. Sometimes I felt like giving up.  I didn't.  My scores began to improve.  Now, I am even one of the top three players.  Don't get me wrong, I still have bad games, but I continue playing because I know I will have good ones too.

I always said I wanted to work at Meramec.  I volunteered in the computer lab.  I learned everything I could through volunteering in the lab. . I didn't give up until my dream became a reality

When I purchased my first laptop I didn't want to use the built-in mouse on the keyboard.  I thought it would be difficult for met.  I wanted a trackball mouse like the ones I used in the data lab at Meramec I  purchased a mouse and plugged it into my laptop.  Over time the trackball of the mouse became worn down causing the mouse not to move properly.  I had no way to get it replaced. 

The time had come. I was now or never. I'd teach myself to use the mouse on my laptop's keyboard.  It wasn't easy.  I found the mouse on my laptop to be more sensitive than the mouse I was used to. The keyboard mouse was more difficult for me to control.  With a lot of practice, I finally learned to use the mouse on the keyboard of my laptop. I was so proud when I mastered it. 

I refuse to give up on my writing.   I know I will have a column published in a newspaper or magazine.  Anything worth having takes hard work and determination.

For r as long as I can remember, my nephew, Kyle has played baseball. He played every chance he got.  He spent a couple of summers in Maine playing on a team in college.  

Kyle had a dream to play professional baseball.  He didn't give up. This spring Kyle's dream became a reality.  He was drafted by the St. Louis Cardinals. He's currently a pitcher for their minor league team The Johnson City Cardinals in Tennessee.  

I am very proud of what Kyle has accomplished. I wish him the best as he begins his professional baseball career.  Kyle is the best example of someone with perseverance that I can give you.  With hard work, determination, and a belief in yourself, dreams can become reality.  All you have to do is persevere...   

PETS ADD SO MUCH

Having a pet enriches your life. It has been proven that petting a dog can lower your blood pressure. Pets teach children responsibility and to have empathy for another living being. Even something as simple as watching a tank filled with fish is relaxing.  When I was little we had a fish tank.  I used to love to watch the fish swim around in it.  They were so graceful. We even had a gerbil for awhile.  I got to take it home for the summer on the last day of school.

There has been a dog in my house since I was two or threes years old.  I have been particularly close to our Maltese, Frosty, and Lucie.  My readers know about the special relationship I have had with both dogs. I have written posts about both of them.  Sometimes having a dog forces me to put their needs before my own.  Just like a parent does with their child. Having Lucie allows me to use the maternal and nurturing side of my personality.  She depends on me. When we visit the vet and they take her to the exam room, she frantically looks back to make sure I am following.  I tell her, "Lucie, I'm coming.  You know I can't move that fast.  I'm not leaving you."

When I volunteered at the independent living center and visited my client at the nursing facility.  I was surprised to see the facility had birds, in the lobby, a fish tank at the end of the hall and there was even a cat in residence. One, when I was leaving, I rode done in the elevator with a man who had brought a dog to visit the residents.  Nursing homes know the benefits of having animals around.

I hope there will always be a dog in my life.  Having a pet makes your life better.  Pets don't judge you.  They accept you as you are.  You care for them and they give you love, loyalty, and devotion in return.   There's no other relationship like it.






























  

IS THIS REALLY GOODWILL?

A report, on NBC News, sheds light on the fact that in many states, disabled people who work for Goodwill Industries are paid well below the minimum wage of seven dollars and twenty-five cents per hour.  Workers in some states make as little as twenty-two cents per hour.  Because of a loophole in the Fair Labor Standards Act, passed in nineteen thirty-eight, paying disabled workers well below minimum wage is legal in this country.  http://investigations.nbcnews.com/_news/2013/06/25/19062348-disabled-workers-paid-just-pennies-an-hour-and-its-legal?lite 

So, while the bosses of Goodwill industries are making millions of dollars, disabled employees are making almost nothing.  The rationale being that the workers don't really care about the money and they are just happy to have a place to work.

This issue is about paying workers what they deserve for the work that they do. Letting them know they are valued employees.  No able-bodied person would work for as little as twenty-two cents an hour.  Why should a person with a disability be expected to?  I'm wondering how those in the corporate offices of Goodwill Industries sleep at night?

I remember getting my first paycheck.  It was such a good feeling when I bought something with the money I had earned.  I felt the same way when I sold the first copy of my children's book. Every disabled person who is employed deserves to know what that feels like. 

The disabled employees of Goodwill Industries just want to be treated fairly and earn a decent wage.  I don't think that's asking for too much.  Do you?   

THE BEAT GOES ON

Cher. Whether you love her or hate her, hearing her name probably brings back a memory.  It may be a song you heard or you may remember those fabulous Bob Mackie gowns she wore on her variety shows.  That’s where I first saw her.  I watched the Sonny and Cher show every week. Whatever it may be, I know everyone has a memory.

I have been a Cher fan for more than half of my life.  I have some good memories.  Like the time I was out with my physical therapist in high school.  We had been to a record store where they had a life-size cardboard cutout of Cher. I thought it was the coolest thing I’d ever seen.  However, the store owner wouldn’t part with it.  We were in her car, ready to leave when my therapist said she’d be back in a minute.  A few minutes later she came out of the store carrying the cardboard cutout of Cher. I never knew what she said to get the man in the store to give it to her.  After getting it home we noticed it had been promised to someone else. She must have told the man a really good story.   The cutout stood in my room for years.  It was a great conversation piece.  Sonny and Cher were doing a concert here and it was announced on the news when their plane would be arriving.  My mom and I hurried to the airport in hopes of seeing them arrive.  We made it all the way to the gate but were told we couldn’t stay to watch their plane come in.   We raced to the hotel where they were supposed to be staying, but we were told they weren’t staying there.  Probably the best memory I have is going to her concerts with my mom.  I know she liked Cher, but I think she liked seeing me have a good time even more.

Cher’s music has helped me through some difficult periods in my life.  The last time I had surgery, a psychologist told me to play her music to help ease my fear and stress.  Cher’s music was also paying while I wrote the remarks that were read at my m mom’s funeral.

My favorite Cher quote is: If you really want something you can figure out a way to make it happen.

I aspire to be like Cher.  No, I don’t want to sing or act.  Cher is a strong person who speaks her mind and doesn’t take the word "No" for an answer.  She never gives up.  

INDEPENDENCE DAY

I'm proud to be an American.  I'm blessed to live in a country where I'm free to express myself in a blog like this. I am thankful for the support system that I have in family and caregivers.  They help me lead an independent life

I had a student in my computer class once who was afraid of me. I believe she was Vietnamese.  Seeing me upset her so much that she was in tears.   My boss spoke with the woman and told her that she had no reason to be afraid of me. Sadly, I think the woman dropped my class anyway.  I remember feeling strange because no had actually said they were afraid of me before.

I mentioned the incident to my brother who'd been a doctor in Vietnam.  He explained to me that in Vietnam disabled people were kept inside.  They never went out.  People never saw them.  I was probably the first person, with a disability, my student had ever seen.

Independence and freedom are not things I take for granted. Had my parents felt differently they could have placed me in an institution.  They didn't.  I had and have a good life.  I was able to get an education and hold a part-time job. I have traveled and had the opportunity to meet some great people. I can't imagine being shut off from the outside world.  Not having the opportunity to experience life.

This day is about much more than barbecues and fireworks.  It's about remembering not to take the freedom we have for granted.  

HAPPY BIRTHDAY, AMERICA!!

MY MESSAGE IN A BOTTLE

The idea for this post came from this article on Yahoo.  

http://news.yahoo.com/blogs/sideshow/message-foun

d-bottle-97-years-under-water-goes-170210979.html;_ylt=A2KJ2PbSI85RAnMAmmLQtDMD  

After I posted the link on Facebook, a friend asked what my message in a bottle would be.

2113, a century from now, I am trying to imagine what things will be like. The first thing that came to mind is that space travel is commonplace for ordinary citizens.  People will be zipping around in space like the Jetsons, discovering other life forms, and learning from them.

No more typing on computer keyboards or using voice recognition software.  You’ll be able to use a computer by just looking at the screen.  The computer will be able to complete tasks for you by reading your mind.

I may have gone a little too far talking about the computer.  Here's what I hope is happening a century from now. I hope that all major diseases like cancer have been eradicated so that no one has to suffer anymore.  Disabilities are a thing of the past.  I hope that all the people of the world are at peace with each other.

If I put a message in a bottle/ Threw it in the Missippi River and watched it float away. Here's what my message would be:

Remember those who came before you.  Their struggles made life better for you. I was here.  I did my best.  I'm not perfect.  I tried, failed, and tried again.  Try to do your best.  That's all you can do.  You'll be okay.



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POSITIVE OR NEGATIVE?

The most positive thing that happened to me was being able to share my blog in two online newspapers. it goes without saying that the best thing to happen to me was being able to publish my children's book.  I'm blessed to have neighbors who look out for me.  

During a recent storm, when my power was out, my neighbor gave me a flashlight with a button that is easy to press to turn the flashlight on.  It also has a beam of light that is big and bright.  My neighbor knows I get nervous during storms.  

I  volunteer at my library three days a week.   I love signing people up for the adult reading club.  I treasure my days at the library being a greeter is a fun way to meet people.  

I went to Jilly's Cupcake Bar and Cafe.  I had a Twisted Pink Velvet Cupcake.  I didn't know cupcakes could be so delicious.  I can't wait to go back.  Why didn't I blog about any of these experiences?  Because I didn't think they were important enough,.  

Our experiences make us who we are.  I write about my experiences growing up because I want people to know what it was like for the disabled community before the Americans With Disabilities Act was passed.  Before the word inclusion existed.  

It was a time when disabled children had very few rights. It was a time when children with disabilities were segregated.  We had very little exposure to our able-bodied peers.  I wonder if we were even thought of as people by some of the staff who worked at the school I attended for thirteen years.

When I write about something you might perceive as negative or depressing the positive message to take away from it is that I got through a tough situation and survived.

 Life is tough when you have a disability, but you can get through anything.  You are just as good as anyone else.  You matter.  You deserve to be treated with respect and dignity.  Have faith in yourself.  When people tell you that you can’t do something don’t listen to them. Keep trying.  If you’re striving for a goal that’s meant to be it will happen.  If it doesn’t think of a new goal to strive for. 

The important thing is to never give up.
  

TOO PERSONAL

One of my caregivers may be replaced.  I’d hate to see that happen because I know everyone needs a job.  I care about everyone who works for me.

I was going to blog about the situation., I mentioned it to someone and they told me I probably shouldn't because it was a personal situation.  The caregiver has a side too.  They could take issue with what I wrote.  I didn't want to upset anyone, so I agreed.

Then, I began thinking (again) about what the purpose of my writing this blog is. I have always said its purpose is to inform, educate, and to make people think. I want to give readers a glimpse into my life.  You may think you know what it’s like to live with a disability.  But, if it hasn't happened to you, you have no idea.

This blog has to be about my personal experiences if readers are to get a clear picture of the problems and issues that I face.  If I begin to censor myself, this blog serves no purpose.  It would become a blog about the routine aspects of my life.   Going to the library, playing Word Tornado on Facebook, watching TV, and reading.  One post on these subjects might be okay, but if that was the main focus of this blog, after a while, I'm sure you'd get as tired of reading it as I would of writing it.

I was told recently, by the editor of an online paper that this blog appears in, they appreciated my candor. I am a very open, honest, and direct person.

I will continue to be open and honest. That's the only way I know how to be.

MAKING THE MOST OF EVERY DAY

My Maltese, Lucie, is almost fourteen years old and her heart is failing.  Lucie means the world to me. I would do just about anything for her.

Lucie has had a cough for several weeks.   A visit to the vet revealed that she has congestive heart failure.  Lucie is now on two different medications.  She seems to be doing well.  She doesn't cough much anymore and her breathing is better. She is back to her old self, barking, begging for food, and taking naps.  She even runs once in a while.

I don't know how long Lucie will be with me. It could be weeks, months, or (if I'm lucky) a year or two.  I just know that I will be lost without her.  We have been through a lot together.  I think I have learned to appreciate her more in the past week.  I guess I took her for granted.  The same way we sometimes take the important people in our lives for granted. 

My mom was on hospice for the last six months of her life.  I did my best to see that she got the best care. I tried to keep things as normal as possible.  We didn't talk much about dying.  We focused on her life and living. I wanted my mom to still find joy and happiness in her life. Despite what her reality was, I tried to give her hope.

I am doing the same now with Lucie.  I don't think about her dying.  I see that she gets what she needs and is happy.  My mom was worried about two things: what would happen to me and what would happen to Lucie.  I promised her I would keep Lucie with me. 

Lucie gave my mom and me so much love. She continues to give me love and affection daily. I  have said before she's not just a dog, she's part of my family.  For however long we are together, I  will make the most of every day.