Merry Christmas!

Last year, Robert and I sent a gift to his brothers, sister, aunt, uncle and grandmother in hopes of bringing them a bit of comfort and peace as we all struggled to find joy in the first Christmas after loosing his mother, Cheryl, only a couple of months before.  This year, I want to share it with all of you.  For those of you who have recently lost a loved one, I hope this brings you some peace and comfort. It is a beautiful poem and ornament that come as a boxed set.

MERRY CHRISTMAS FROM HEAVEN

I still hear the songs
I still see the lights
I still feel your love

on cold wintry nights

I still share your hopes
and all of your cares
I'll even remind you
to please say your prayers
I just want to tell you
you still make me proud
You stand head and shoulders
above all the crowd

Keep trying each moment to stay in His grace
I came here before you
to help set your place
You don't have to be
perfect all of the time
He forgives you the slip
If you continue the climb

To my family and friends
please be thankful today
I'm still close beside you
In a new special way

I love you all dearly
now don't shed a tear
Cause I'm spending my
Christmas with Jesus this year
Copyright 1990 John Wm. Mooney. Jr.

If you are interested in purchasing one for a friend are loved one, we purchased them at Holy Grounds Gift Shop in Grapevine but you can also find them online, too.  Simply google Merry Christmas from Heaven. 

This year as we s a special place on our tree this year as we pause to remember Cheryl and many others that have gone on to spend Christmas in Heaven this year.

"I Want You To Help Me Die"

Wow!!! I am spending a day working on some homework and catching up on my DVR.  I was 7 episodes behind on Private Practice so I am just now see the episode that was in part a follow up to the one that I talked about a few months earlier. Part of the story was about whether or not the character should get tested for HD after her mother passed away from the disease.  Private Practice Episode
The friend (Michelle) of Amelia's that was diagonosed with HD in this previous episode has just come back from a 6 month vacation in Italy.  She has begun to exhibit tremors and even a few seizures.  Michelle has returned from Italy and told Amelia "I want you to help me die." I will let you make your own choices on how you feel about that statement but I will share my thoughts with you, too. 
Robert has often joked that when he can no longer take care of himself and do the simple things like getting dressed or using the restroom on his own, he wants me to shoot him.  While he does make jokes about it, there is an underlying point to this statement.  He spent time having to change is mother when she could no longer do it herself and he hated every minute of it.  He doesn't want to have to put me or anyone else through it.  It is in part due to his own sense of dignity but also that part of him that does not want to be dependent on anybody else for his own personal well being. So, there is a bit of seriousness behind his jokes.  I get that.  I know my husband and how he thinks and I also know how he feels about relying on someone else to take care of him.  He hates it even now when I try to take care of him in some way when he can do it himself. 
But, help him die? I don't think so! To me, that is playing God.  And last I checked, I am not God and I have no desire to play that role.  I fully believe that God has a plan and a time table for how all of this is going to work out. It isn't up to me or Robert or Michelle or Amelia to circumvent God's plan. And trying to do so can seriously backfire.
Amelia agrees to help Michelle die.  She begins a cocktail of three drugs - a barbiturate that relaxes the body, a paralytic that suppress the body's many different systems and finally a potassium solution that essentially stops the heart and kills the person. When Amelia injects the barbiturate, he causes Michelle to have trouble breathing. Instead of continuing with the process, she tells Amelia to stop and that she doesn't want to die anymore.  Not like that, anyway.  So, she is rushed to the hospital and survives. Then, a few nights later, Amelia comes home to find Michelle dead after she overdosed on Oxycontin or something.
I have so many emotions swirling inside me after watching this episode.  In a lot of ways, it seems to me that she took the chicken's way out of it all. Instead of having to deal with the life that God has given her for whatever reason and she is throwing it back in His face.  She chose to do it on her terms instead of His. On the other hand, I can sort of sympathize with her.  I can only imagine what it is like to have to live with that diagnosis and the many symptoms that are associated with it. Having seen what Robert's mother went through and what caring for her did to him and his brothers, I can see how some people might not want to wish that on their loved ones.  But does that make it right?
When a person makes the decision to be tested for HD, they are required to undergo counseling - both genetic and psychological - as part of the process.  The reason is because of the emotional side effects that come with the diagnosis.  Whether positive or negative, there is an emotional roller coaster that is associated with the diagnosis. Both episodes of Private Practice do a very good job at showcasing the roller coaster ride..  But seeking counseling was not mentioned.  Maybe it should have been.
But, still, that doesn't make what she did okay.  Yes, the disease is brutal. Not only on the person living with the disease but those who have to care for that person, too.  However, suicide is not the solution. And when it comes time, I will not be able to help Robert do it.  I will respect his wishes for the DNR and no feeding tube or any other type of life extending measures. I will not be responsible for playing God though and removing Robert from this earth before it is his time.
And while I do thank Private Practice for shedding light on the emotional turmoil that a person must go through, I think they took the easy way out.  Michelle was in the beginning stages of the disease and still had a lot of life ahead of her.  Yes, she had tremors and they were still there when with medication, but they were not as bad as they were without medication. She could still talk, walk, eat and generally take care of herself. It was the beginning of the symptoms.  Instead of living with the disease and surviving, she decided to make a decision that was not really up to her.  She used her own timetable and played God. She ended her life before it was over and left behind a swarm of people that were hurt because she left them.
Suicide is not the answer.  While the disease is hard for everyone involved - the diagnosed and the caregivers - we have to rely on God to work it out on His terms. And besides, with the many advancements in medications to treat the symptoms and the testing that is being done every single day, there could be a cure for this disease tomorrow.  Do you want to end your life today knowing that tomorrow might be the day that could have saved it and allowed you to live a normal life?
If you want to see the episode, here is the link to it.  Private Practice - I want you to help me die.

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.