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| Hi! My name is Jamie and I am a sophomore at
Purdue University in Indiana. I have read all the stories of people with Scleroderma and I
realized that there are few if any stories that regard the children of a parent with
Scleroderma. My Mother is 52 years old and has Scleroderma. Her name is Julie. She has 3 children or should I say 3 beautiful children, and has been the best mother a child could ever ask for. I am 19 and have a twin brother, Jay. My oldest brother is Joe and he is 22. And may I add that my father and her have been married for 25 years. It was about 7 years ago that I had found out that she had this disease. I really didn't think much of it because I knew she was my mother and that she would always be there for me. We would be grocery shopping and her hands would just turn purple and she wouldn’t be able to move them. I would grab her hands and put them in mine and rub them until they no longer looked purple to me. She would say it helped but we knew it was her Scleroderma that was doing this to her. We would laugh about it and continue shopping. It wasn’t a laugh about her disease, but that we were doing this in the middle of the local grocery store. I didn’t care I just wanted my mother to be warm. She always complained about being cold. But what I have noticed is the little things that other people can do with no problem, she can not do. Little things like lifting boxes or even putting earrings in. I have helped my mom many times do these little things. She is still able to be a mother, which is the most important thing to me.
What really inspires me is the fact that she does not and will not give up on herself, which makes us not give up on her. She has been very quiet about her disease and tries not to let it bother her. My mother has been a very strong person. I think it’s the fact that there is no cure for this disease that really bothers me. She has been to many doctors and I do believe that there are great doctors out there. You just have to find the right one. She still and always will have her disease but her progress is doing great. I believe our family has made life more enjoyable for her and it is hard dealing with these kinds of situations. To all children that suffer from this type of situation, believe in your family member and help make them stronger. It’s the little things in life that we take for granted.
Jamie - jjongki1@purdue.edu copyright 1999 Jamie Jongkind Return to Diffuse |
