Scleroderma

Hi, my name is Denyce Le Gendre and this is my testimony.

I am not the one afflicted with this disease but I am affected by it. My mother was diagnosed with Scleroderma about 7 years ago. No one really knew at that time the severity of the situation but we learned quickly.

Being the age that I was, I must admit that I didn’t think much of it. I just thought she was tired all the time because she was getting older. This disease slowly introduced itself to me. I watched it change my mother, her skin, her hair, her face, everything. It really hit home for me the day she stopped breathing right before my eyes. I knew she was sick, I saw her in pain all the time and I thougt at the time that would be it until I thought she left me. I felt like I fell into a black hole, I was overwhelmed with sadness.

I cried myself to sleep so many times. My mother tells us that we should talk about it more so that we could come to terms with it so that we could deal with ‘that day’ better. I do not agree, I could come to terms with whatever I want in this life but how in the world could anyone prepare themselves for something like that. She is my mother for goodness sake.

I still feel sad most of the time because my thoughts haunt me everyday. I am terrified that she would not be here to see me get married. I am scared that my children may never meet this incredible woman I am proud to call my mother. Scared that when I graduate from school she would not be there to tell me how proud she is of me. I am young still, the middle of five children and at 21 years old I have not had enough time with her yet. When I think about that it makes me so sad because I got 21 years so far, what about my younger brother and sister they are only 9 years old. I have seen my mother go through so much pain, so many trips to the hospital, so many sleepless nights. Yet still she fights, she fights to be here for us everyday, what more can any child ask for.

Recently, I had an assignment to do for my communications class and I choose to write about Scleroderma. Well, as soon as I got up in front the class I said good afternoon and that was it. I cried through the entire speech. By the time I got to the end, my class was crying with me. I was glad that I did it because I got the opportunity to educate others about this disease and it gave me a chance to talk about it.

People always ask you who you admire or who is your hero and people tend to talk about fictional characters. I have the priviledge to say that my mother is my hero. Through adversity she found strength, hope, faith and wisdom. She decided to create something not for herself but for others who feel alone just like she felt. She along with my older brother are working hard to build the Scleroderma Care Foundation.

I see what she has done, the lives she has changed and I am so proud. So proud of the both of them. It doesn’t make sense for me to be depressed and say why is this happening in my life, why does this have to happen to my mother. Instead I think, why not me, why not my mother. She may be the one, the one to help find a cure and in the process I get to witness her strength and her passion for helping others.

So I will continue loving her, spending time with her, helping her out in any way I could. Mostly I will continue enjoying the time she is here with me, making memories that I will cherish and be able to share with my children in the future.