"Jeannette's Song" was written in honor of my wife, whose name is obviously Jeannette. I watch as moment by moment, day by day, year after year, she keeps pushing on. Everything she does requires much more effort because she suffers from a rare genetic disorder known as Wilson's Disease. Wilson's Disease is also known as Hepatolenticular Degeneration. At the time she was diagnosed, very little was known about the disease, because it is such a rare disorder, effecting approximately 1 in a 100,000 people.

At that time, the standard treatment was to put the patient on a drug known as Penicillamine. Unfortunately, this drug took patients who were already experiencing neurological symptoms from bad to worse. It basically turned the patient into a vegetable. From that point, the patient had to learn how to walk and talk all over again, and there was much unnecessary brain damage. There are much better treatments today. Unfortunately, these new and better treatments didn't come along until many years after Jeannette was first diagnosed.

It is also disturbing to realize that Wilson's Disease is still being misdiagnosed today. I had been reading the story of Jeff Dirlam on the Internet. It is a tragic story of a father's struggle with the medical system just to get a proper diagnosis and treatment for his son suffering from Wilson's Disease. His son lost his life, and this may have been totally unnecessary. This is just one in many instances where Wilsons patients had to deal with permanent disabling damage and even death unnecessarily. Anyone who understands the nature of this disease knows that people will die from this disease, and accurate and timely diagnosis of this disease is critical.

What is Wilson's Disease?

Wilson's Disease is a inherited genetic disorder that causes too much copper to accumulate in the liver, brain, and other vital organs. Copper plays an important role in a healthy body. Copper is absorbed from our food, and then is excreted through bile, which is a substance produced by the liver. With people suffering from Wilson's Disease, the copper is not processed normally, and it begins to accumulate in the body, which will be fatal unless detected and treated early.

What are the symptoms?

Rarely does Wilson's Disease rear it's ugly head and become symptomatic before ages 4 or 5 years of age, even though copper begins to accumulate immediately at birth. The disease becomes symptomatic by the age of thirty in most cases. In Jeannette's case, she was 14 years old when she begin having acute anemia attacks and had to have blood transfusions. It was not determined that she had Wilson's disease until she was 19 years old.

Because the problem begins in the liver, the symptoms would be similar to the symptoms from LIVER DISEASE. That could include abdominal pain, yellow skin and the whites of the eyes, or jaundice. Later in the disease the symptoms could be manifested in anemia and vomiting blood.

NEUROLOGICAL PROBLEMS: Approximately 30% of all Wilson's Disease patients will manifest neurological symptoms. Problems such as difficulty speaking, drooling, unsteady walking, tremors, and muscle spasms become evident. There can be abrupt personality and behavioral problems in Wilson's patients. Many times children are misdiagnosed as having behavioral problems.

KAYSER-FLEISCHER RINGS. Many people with Wilson's Disease will develop a brownish, golden colored pigmentation around their corneas. This can be detected through a routine eye examination. These are some of the major symptoms, and there are others. Don't be afraid to mention Wilson's Disease to your doctor if you or a loved one suffer from any of these symptoms.

Jeannette's Song was written with love and great admiration, after observing her for these many years, having to deal with the disease, and all of it's related issues. She struggles along every day. "She makes things look so hard," and yet with determination of steel, she pushes on, even with all things seemingly against her. Most of the time, she manages to accomplish more in a day than most people, because of her selflessness and sheer determination. It' never ceases to amaze me.

The second verse of the song speaks of some of the trials these "angels" (handicapped people) sometimes have to endure because of ignorant and just plain rude people. "Things you and I, take for granted, like the way we walk, like the way we talk. Don't you think she knows, when some stare and others laugh? Don't you think she knows, although it never shows."

I don't know how many times people have laughed at Jeannette because of her cumbersome gait, or the way she talks. I just noticed the ones that I have observed out of the corner of my eye.

I think of the times when my children had others tell them their mother was a retard. I recall the times she would tell me about people on the phone who would hang up on her and say mean things to her. On one instance a rude person on the telephone made a mean remark something like "all I needed today, a G** D*** retard, while hanging the phone up in her ear.

They obviously do not realize who they are talking to. To some she is regarded as a G** D*** retard, but to us she is an angel. To us she is special. To her children, she is mom. To her children she is "my best friend." To her husband, she is a loyal, faithful friend, and mother of my children. To all of us, and all who know her, she is an angel.

Just by way of clarification, Wilson's Disease affects the part of the brain known as the Basal Ganglia, or Basal Nuclei. This is the portion of the brain that affects motor movement, emotions, and cognitive function. A patient's intelligence is not affected as a result of having Wilson's Disease. In fact, Jeannette graduated high school with honors as salutatorian of her class.

I'm sure there are many "angels" out there today, who are misunderstood ,and yet they are angels indeed. I often think of Terri Schindler Schiavo when I sing or play Jeannette's Song.

If you do not remember Terri Schindler Schiavo, she was the woman that died on March 31, 2005. Because of a cardio respiratory arrest ,which led to severe neurological damage by depriving her brain of oxygen, she was confined to a bed. Although she was breathing on her own, a judge gave the order to remove her feeding tube. After 13 days she finally died of dehydration and starvation. I hope our nation will not slide down this slippery slope. Jesus wants us to support the weak.

The third verse of Jeannette's song goes like this: "Sometimes shunned by those she loves you think she knows. So alone she goes." Not always have family members been supportive of Jeannette. Sometimes we get shallow and perhaps become embarrassed when walking with someone who walks, or talks so much different than others. The truth is, Jeannette is not only smarter, and more highly educated than most of those who talk around her , or down to her, but the incredible quality of her character as a person makes it a privilege to walk by her side. Her magnetic personality, and her selflessness become rapidly evident by those who take the time to know her. You can walk by her side with your head up high because you know she has a heart bigger than the state of Texas.

The last verse of Jeannette's song goes like this: "Often in this world, things don't seem fair. But in the world to come, another angel will be there."

We don't know why people are born the way they are, or why some people suffer from infirmities and debilitating diseases. God knows, and sometimes God allows these things to somehow show His honor and glory. I'm sure there are many out there who can attest to the fact that their handicapped "angel" holds a special place in their heart. Because we do not always know the mind of God, I pray that our society will always remain compassionate and sensitive to people with special needs. One day our "angels" will be in heaven. Then they will have their new and perfect body. Life is but a moment compared to eternity. If we can view things with eternity in mind, we can begin to view things as God views them.

Anyway, I hope you enjoy the song. It will be on the "Clips In Time" project which I hope to release this fall, God willing.

Click to listen to Jeannette's Song