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Raymond: Surviving Son of Scleroderma Patient

Canada

My Uncle Edmond passed away from scleroderma, too.

Raymond's Sorrow by Shelley Ensz On September 31, 2002, my mother, Claudia Girouard, lost her courageous fight with scleroderma

In 1994, my mother felt pain in her arms and the doctors couldn't figure out what it was. She went for test after test and the only thing the doctors could say was arthritis.

One day she fainted. The skin on her arms turned brown. Needless to say, that really confused the doctors. Back she went for more tests, until finally they got it right and diagnosed her with scleroderma.

When the doctor diagnosed my mother with scleroderma my family could only ask, "What is that?" We did not have a clue what it was, and to be honest, the doctors could not tell us either. No one could tell us anything.

We did not know what was in store for my mother. We did not know how rough it was going to be or how dangerous scleroderma really is.

Thanks to many wonderful web sites on scleroderma we eventually found the answers we were looking for.

From the time she first fainted and her arms turned brown, we started to see significant changes in her appearance. My mother was a big beautiful lady when first diagnosed, and became a very small and very pitiful looking lady when she passed on.

During her illness she never complained once. She never complained that she could not swallow or even that her lungs were only working at forty percent. All she wanted to do was live.

I was a single dad to a very wonderful son and my mother helped me every chance she could. She cooked until her fingers started to curl and she could no longer hold a spoon. She loved to laugh and loved being involved in our lives and with her grandchildren. My mother did not stop living during her illness. She went to every family gathering and any benefit to support others.

Many times during her illness there were battles. She had three heart attacks. Every cold she got was a battle. Her blood pressure would go down and have a hard time getting back up. But she would bounce right back up and get on to another journey.

The final three years of my mother's life, I must say, were the worst three years of my life. I had a very hard time accepting the changes in my mom's appearance and her life. I would not go to my parents' house to see her, because every time I looked at her I mourned.

One day, with just her and I at home, I sat with my mother and told her why I had such a hard time visiting and we made peace. I told her how I felt and how much it hurt me to see her this way. She just looked at me and called me a coward and laughed. But she understood and thanked me.

In September 2002, my mother started to notice her toes were turning black. My sister brought my mother to the hospital. She was admitted right away. Over the next two months she lost both big toes. After each surgery she got weaker and weaker. Then the doctors noticed that one of her toes was not healing and it looked like another operation was in store for her. But first they had to fix her feeding tube that moved during her time there.

Every day in the hospital my mom was getting weaker and weaker. Before the doctors operated on the second toe my mother cried and cried, fearing that she was not going to wake up from the operation. Well she did wake up. She woke up to more suffering and more pain than what she had before.

During the days before the final operation on my mother's feeding tube, the doctor went to her and asked her if she wanted it done. He did not hold back and was honest and told her that there was a very strong chance she was not going to make it. She was weak and her blood pressure was very low. She looked at the doctor and told him that she could not go on like this anymore and was ready for her place beside God, which she believed in very much.

The night before the operation she asked the family to pray to God that he takes her. That night that is what we all did. We all went to bed that night and we wished for what my mother asked.

On that night I was working out of town and I did not want to be anywhere near that hospital. I stayed in my motel room and just prayed. I hoped that when I got into work that morning that I would have a message to call home and it would finally be over. But that just was not meant to be. Her operation was postponed for a couple of hours. Every one of her brothers and sisters, all sixteen of them, and six of her children, except me, the big coward, was there.

Before the operation my mother asked everyone in and said good-bye to each of them. She apologized to my dad for being sick and told him to take care of us all. She told everyone that she loved them and told everyone to take care.

When they came to get her for her operation she looked at her mother and her sister right in the eye and she asked them to pray that she does not come back. During the operation the chapel in the hospital was full of people praying for this wonderful lady who had so much strength and courage. They prayed that the lord will finally make peace with her and take her home.

She made it through the operation. They brought her upstairs to her room where she could be with her family. An hour later my mother was finally called to her place in heaven. It was the most beautiful death that you could ever imagine. She got to say good-bye before the end.

After her death I made it a personal goal to make people aware of scleroderma in Canada. I have been emailing the government and have also been in contact with the scleroderma groups in Canada. I have been asking the government to support funding for research, and to educate the doctors and families of patients who are suffering from this horrid disease.

My mother's brother has just been diagnosed with scleroderma. Now a new battle begins.

~Update 3-15-03~

At the ending of my mom's story I told you of my Uncle Edmond who was diagnosed with scleroderma. Well, he's doing fine and he's still going strong. Just like his father, in my eyes, he walks on water. He is a wonderful man and a very caring father.

But now another case has showed up in our family. My Uncle John, who is also a very wonderful man, was told this week that he also has scleroderma.

Coincidence? I think not. The doctors here tend to think so. My mother was fifty-two when she was told she had scleroderma and her brothers are also in their fifties.

It is very scary to think what may be happening here. When my mother got scleroderma, my family had no clue what to expect. We did not know the changes that were going to take place with her, but for my uncle that is not the case as they have seen it.

Now we have to put our heads together and try to work on what we have to do to keep them with us. My mother has ten other brothers and sisters. I know how scared I am for my three wonderful children, Nathan, Derek and Kim. Could you imagine how they feel? I know they are scared, too.

I feel like I am just waiting to hear the doctor tell me I have it.

I have three wonderful aunts who were with my mom the whole time, and I know they will be there for my uncles also. For now all we can do is pray. Pray that they find a cure for this horrid illness. And I pray for every one who is suffering with it. May God give you all strength and the courage to fight this and beat it. do not let this get the best of you.

I will keep you all posted on my uncles and any other changes going on with my family and scleroderma. For now, this is about it, but in the future I plan on being a voice against scleroderma. I will speak to those who matter and who I believe can help make a difference.

~Update 10-20-08~

On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on and is sitting in eternal life beside mother. He was sixty-three years old. He was the most wonderful man any one could ever know. He was always smiling and was always making people laugh. His wife Joan and their three children Danny, Rhonda, and Joel will surely miss him. As we all will.

Scleroderma is still in our family as you know in my last update, with my uncle John. This really has to be looked at.

Uncle Edmond, you will surely be missed. I love you and god bless you.

To Contact the Author

Raymond Girouard
New Email: [email protected]
Story submitted:11-25-02
Story posted: 12-7-02
Story update posted: 3-15-03
Email note posted 01-24-05 SLE
New email posted 03-35-06 SLE
Story Update edited 10-21-08 JTD
Story Update posted 11-13-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
LINKS
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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