In Memory of a Very Special Lady

When I first met Cheryl Everett, the disease had already started to rob her body. She constantly trembled or shook. Not majorly thanks to medications but it was present, none the less. She was beginning to have difficulty speaking, too.  She knew what she wanted to say but sometimes had trouble making her mouth cooperate.
But what I took away from that first meeting that sticks with me seven years later are two things. Her ever present smile and her unmistakable  love for her children and family.  Well, three if you want to include the part where she said she liked me much better than Robert's first wife. We had some wonderful talks about her 2 favorite subjects - the Dallas Cowboys and Elvis Presley.
Since she lived with her mother and sister in Cleveland and then in Virgina with Robert's brother Craig, we didn't get that many opportunities to spend time with her. However, we did see her a few more times. And each time, you could clearly see the progressions of the disease.  When we saw her a couple of years later, she was using a walker and struggling to say even a few words.  Fast forward a couple of years, she spoke sentences of single words and had a feeding tube.  She could no longer sit in a chair for very long because her uncontrolled jerking would cause her to fall out of a chair.  Then, by the last time we saw her in 2009, she couldn't talk at all. 
However, even when she couldn't talk, she could still smile.  To the very end, she would always smile.  And if you asked her if she wanted to watch an Elvis movie, she would get very excited as if she was ready to get up and dance to Elvis singing.  Just like she did when her children were growing up. She loved Elvis and one of his movies never failed to make her happy.
On October 14, 2010, the Lord took Cheryl Everett home.  While we all mourned her loss, we knew she was no longer suffering and that was dancing with Elvis.  She will be missed by many but each person she touched in her life still carries a piece of her with them.  And she lives on in the lives of each one of her children in some special way.
Cheryl, we love and miss you.  Our lives are better for having known you.

Blessings

Sometimes, we often wonder where the blessing is in the bad things that happen in our lives. Where is the blessing of watching a child fight cancer? Where is the blessing of not being able to communicate with your mom because a disease has taken away her ability to speak? Where is the blessing in watching a family member destroy their family through a divorce or alcoholism? Where is the blessing in watching as my husband and other family members slowly deteriorate before my eyes?  Where is the blessing in saying goodbye to a friend that was taken from us way to soon? I don't see it.

Enter Laura Story's song "Blessings" to remind us of the answers to these questions. 

Laura Story wrote this song as she struggled to understand why the man she so very recently married was stricken with a brain tumor. It was a long and painful road of surgeries, near death and a man that forgot he was married to her at times.  She prayed for healing daily and for understanding why this was happening.  It inspired her to write a song that has become a huge blessing to me and countless others. The chorus of the song speaks volumes about why we often have to face certain things...

What if Your blessings came through raindrops?

What if Your healing comes through tears?

What if a thousand sleepless nights are what it takes to know Your near?

What if the trials of this life are Your mercies in disguise?

God even wrote an entire book in the Bible about this very thing.  Job was an upright man of God.  He lead a life faithful to the Lord.  Yet, he had it all taken away from him. And he cried, and he questioned God.  In the end, he realized that God used this to bring Job closer to Him and allow Job to see even more clearly amidst the tears.

What if the trials of this life, the rain, the storms, the hardest nights are your mercies in disguise?

Simple words that speak volumes. And a powerful reminder that sometimes God will use something that does brings us discomfort of pain to draw us closer to Him and reminds us of his unending love and the strength that we can find in His arms.

I know the road ahead of us will often be filled with pain and turmoil.  I know that at times I will lose sleep and cry out in anger.  But, I also know that God is with me and will walk alongside me as Robert continues to battle this disease that neither one of chose for him.  However, God has started us on this journey for reasons we may not yet see or understand.  But, He knows what it is and He will use this for His ultimate purpose of our lives.

Here is a link to a video from YouTube of this song.  I pray it blesses you as much as it has blessed me. 

Laura Story's Blessings

Is a Lawyer The Way to Go?

We have received the second denal letter from Social Security telling us that they have denied Bill's request for benefits.  Something about not showing signs of the disease.  Must be the whole misunderstanding that the Social Security Administration has about the disease, but that was another blog...
So, we have filed an appeal yet again.  This time, it is the request for a hearing.  Basically, the case goes before a judge and he will decide Bill's fate. When the hearing will take place is anyone's guess. Current backlog is averaging about 364 days, according the Social Security Administration website.  I sure hope it does not take that long.
The decision we have been wrestling with in this appeals process is if we should get a lawyer for him to appear at the hearing. SSA even provides a list of lawyers to contact if interested. And they are free of charge if you don't win a settlement.  Sounds like a good deal.  A lawyer will take the lesser of 25% or $6000 of the back pay that is awarded to the person. Back pay is usually the amount the claimant will receive each month back dated to when first filed or another date the judge decides on.  Sometimes, the judge will decide no back pay.  It is the judges opinion of when the conditions really set it that make the person disabled and unable to work.
Using the premise that Bill will get back pay from the date the first request was filed - approximately one year ago - and the estimated monthly amount we have been told he will receive of $640, the lawyer could get roughly $2000 if the claim was approved today. Then, when you factor in that the average processing time from when a hearing is requested to when the hearing takes place is approximately a year, you can pretty much double that amount.  For a person that will have to set up some sort of living arrangements and buy many of the basics that a person needs, losing that amount will not be easy for deal with. 
On the flip side, if he does not win the case, then the lawyer gets nothing. Basically, he takes the case for free. So, it does seem like a good idea, right? If we lose, we lose nothing. We have nothing less than what we started with. Plus, most lawyers will not take the case unless they are confident the judgement will be favorable for the claimant.  They aren't going to take a case that will not get them a payout of some kind.  They want to make money just like everyone else. And a lawyer will take care of making sure all the paper work is filed, all medical information is received and anything else that comes up.
So, maybe hiring a lawyer is a good idea.  It will make things a lot easier and give us an advocate that wants to win for us but also understand the laws and knows if we really have a case or not. Granted, it will cost if the settlement is won, but isn't it better to get something than nothing at all? And the consultation is free, so if the lawyer doesn't think you have a case, then he doesn't take your case on. 
Now, how to pick the lawyer... 
Actually, that part is pretty easy.  In the paperwork that is sent confirming the request for a hearing, the Social Security Administration provides you with a number to contact someone.  You are then directed to attorneys in your area.  So, we have contacted an attorney.  Now, we wait and see what he thinks and how long it takes to get the next phase of this lengthy process started.

Where Were You 10 Years Ago?

It is the question that so many people ask about significant events that happen during a lifetime. For one generation, it was where were you when Pearl Harbor was bombed. For another, where were you when you first heard about the Kennedy assassination.  So, where were you when you first heard about the terrorist attacks that happened ten years ago today?  I can remember it so clearly. Just like it happened yesterday.

I was on my way to work at American Airlines.  My brother-in-law Eddie and I were listening to 1310 the Ticket.  I could even tell you that he owned a white F-150 at that time. We were listening as the guys described the scene they were seeing on Channel 8, of this plane sticking out of the World Trade Center. At first, for a minute, I was thinking that they were talking about the World Trade Center that is in Dallas.  It took me a minute to understand they were talking about the one in New York City. Then, just as I was getting out of the truck, they described the scene as the second plane hit the second tower.  I knew then that our world was about to change.

I walked into the office. Two of my co-workers were there and I asked if they had heard.  They knew about that first plane.  I told them what I had just heard.  One of my co-workers confirmed what I was thinking.  This was a terrorist attack. No doubt about it. A few minutes later, we were walking through the office to the cafeteria for our morning ritual of filling cups with ice and grabbing our soda or coffee.  On the way there, another friend stopped us and whispered that one of our plane had hit the first tower.

Shock doesn't begin to describe they way we all felt at that news.  Surely that wasn't possible.  But, we soon learned just how possible it was and much more was to come. We were missing a second plane.  Then, an announcement that one of our flight attendants called into the security department to say that guys with box cutters had taken over the plane and nobody knew what would happen next. Unconfirmed reports of an American Airlines plane near the Pentagon were soon confirmed of having crashed there and we all began to fear the worst. 

When it was all said and done, the world as we all knew it had changed in ways than any of us could ever fathom.

Through it all, I am grateful to the many, many men and women who sacrificed their lives to try and save the lives of others.  To all of those people that  lost a friend or family member that day, I hope you can take some peace in knowing they were doing what they loved and that they will not be forgotten for the sacrifice they made.

Huntington's Disease Awereness Day

In June of 2010, Congress designated June 25th as National Huntington's Disease Awareness Day with the goal of raising awareness and the need for further research. Huntington's Disease was first discovered by Dr. Geoge Huntington in 1872. The mutated gene that causes Huntington's Disease was discovered in 1993 and research has increased rapidly since that time. But there is still no effective treatment or cure for the disease. And research is still being done every day to help find a cure for this disease.
What is Huntington's Disease?  It is a disorder passed down through families in which certain nerve cells in the brain waste away, or degenerate.  This is caused by a genetic defect on the fourth chromosome that causes a part of DNA to repeat more than normal. In an uninfected person, the repeat occurs 10 to 35 times. A person with Huntington's Disease has this repeat anywhere from 36 to 120 times. As each generation passes it on to the next, the number of repeats grows and the number of repeats usually determine the severity of symptoms and the progression of the disease.  A low number of repeats has a slower progression.  People with a higher number of repeats usually develops symptoms earlier in life and progress at a much faster rate.  The average progression of the disease is 15 - 20 years from the onset of the beginning symptoms. The most common cause of death is the result of a complication such as an illness that the body is not strong enough to fight off.
The gene is hereditary.  There is a 50% chance that an infected parent will pass it on to a child. There is no way of knowing if that will happen or not. There are ways that you can stop the gene from being passed on such as donor egg or sperm programs, testing that can be done on an embryo allowing parents to make the decesion to keep the child or terminate a pregancy before the baby is given a chance and even the oppurtunity to chose in-vitro fertilization where test can be done prior to embryo implantation. But, through the natural process, it's a 50/50 chance. We each have our own thoughts on that.  Mine can be looked at in an earlier blog.
Finding a cure is important, but an understanding of the disease is important, too.  Not only so that families can be more informed about how it affects them but so that those outside the family affected can understand, too.  Many times, the disease can go undiagnosed if the person is not aware that they are at risk. Then, when diagnosed, the infected person can often be discriminated against because people do not understand it.  And like any other discrimination, the misunderstandings are often passed on from one generation to the next. This makes it harder to wipe away that stigma.
If you had mentioned Huntington's Disease to me eight years ago, I would have no idea what you are talking about.  If you didn't know Robert or Debbie, you probably wouldn't, either.  If Robert had not come in to my life, I wouldn't have a clue what the disease is or how it affects families generation after generation. And I will admit that if I wasn't familiar with the disease and how it affects people and had met Robert's brother Bill in passing, I would be contributing to the stigma.  He can sometimes have uncontrolled tremors, walk around with an unsteady gait and his arms will be bent at the elbows and flail around somewhat.  Eight years ago I would have dismissed him as a drunk or as a mentally ill.  Only that would not be the case.  There is something very wrong inside his body that cause him to act the way he does. That is why this day is so important.  Putting a stop to the stigmas and raising awareness of the debilitating disease are as important as finding a cure.
Understanding the disease and sharing the information with others is important so that we can increase awareness of a heartbraking ordeal that affects approximatley 30,000 people worldwide and their families. Watching one family and how this disease has changed their lives is more than enough. I want to end it so that no other family has to endure what Robert's family has. I hope I have done my small part in helping to educate others about the disease and the importance of more research that will lead to a cure.