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.

  

A LESSON LEARNED

I needed someone to cut my lawn.  I did not know who to ask.  Two young men were cutting a neighbor's grass and asked if I needed someone to cut mine.  I refused, at first, because I didn't know them, but with my grass growing higher, because of all the rain we've had, I finally made an appointment for them to come.  They quoted me one price, but then said because my grass was so high, they'd have to charge me more.  I paid them, they did the work.  Everything was fine. 

Five days later there was a message on my answering machine from them asking if they could come cut my grass again.  In the five days since the two young men had cut my grass, the neighbor who had been doing my yard work said he'd continue to work for me.  So, the call on my answering machine was deleted.  I thought if they didn't hear from me that would be the end of it.  I was wrong.

The next morning I received a call from the one young man.  He asked if they could come cut my grass.  When I explained my neighbor was going to do it the young man asked if they could cut my grass one last time as they were trying to start a lawn care business and would really appreciate it.  Wanting to help them and knowing how hard it is to get a new business going, I said they could cut my grass one last time.

When they arrived they asked for the money because they needed to get gas for the lawnmower.  I gave it to them. They assured me they'd be back.   I'm sure you can guess what happened.  They took my money and never returned.  I called them,  my caregiver called them. They assured my caregiver they'd be back.  The police told me it was a civil matter and there was nothing they could do.  The one young man hung up on the officer, who came to my house when he called their cell phone number.

I guess this story makes me sound naive and foolish.  I guess I was.  I am guilty of wanting to help two young people. For that, I got my money taken.  This entire experience has made me very cynical and distrustful of people.  It will be a long time before I  help someone again. That's sad because I always try to see the good in people. I will only deal with people I know well from now on or people who have been referred to me by someone I know..

I have to wonder how many other elderly or disabled people those young men have taken advantage of.  I hope someday the disabled and elderly won't be viewed as easy targets by people.  I would like to ask the young men if they are proud of what they did.  Just remember what goes around comes around.  God knows what you did.

LOVE IS ALL YOU NEED

My parents learned I had a disability when I was about eighteen months old. I was born prematurely at six and a half months.  I hadn't achieved any of the milestones that babies normally do, like sitting up by myself, crawling or walking.  They had taken me to a doctor who tried to elicit a response from me by running his hands down one side of my body.  My mom told me I didn't smile, laugh or react in any way.  The doctor told them that I was paralysed on my left side and and would never amount to anything. . Mom told me he was a very direct and cold man.  She thought I sensed this which was why I didn't show any reaction.  I'm not sure if it was this doctor or not who made the final diagnosis of Cerebral Palsy.  I can tell you that 'I'm not paralyzed. 

I can only imagine their shock and disbelief. My parents lives would never be the same. And, neither would the lives of my siblings.  My mom would learn how to do the physical therapy to stretch my arms and legs.  I would be fitted with braces that would lock at the knee so I could stand in my standing table and walk in a walker or in between the parallel bars a friend's father made for me. I remember my mom standing behind me, holding on to me, then letting go for a second to see if I achieved standing balance.  I tried to walk using crutches, but the balance never came.

I needed a lot of my mom's time and attention.  Not only did she care for her children, she also helped my father in our grocery store.  She had a lot on her plate. 

It's not easy to raise a child with a disability. It takes time away from the other children in the family.  So, while parents are devoting their time to caring for and encouraging their  disabled child,  don't forget their siblings.  I'm sure my brother Bob, who is three and a half years old than I am, felt slighted sometimes because of all the attention I received.  It wasn't intentional.  It was just the way it was. Make time for every child in the family.

A child with a disability can teach their family some much.  Lessons about compassion, understanding and acceptance.  .It may not always be easy. But, the pride of seeing your child reach a goal they have been working toward makes it all worth it.  One of the happiest days for my mom was when I received my Masters.

 Whether or not a child has a disability, the most important thing you can give a child is love.