“How Scleroderma Changed My Life”

My life has been changed a lot since my mother got diagnosed with diffused scleroderma. I still remember the exact day I got the news that she was sick just days before Christmas in 2018 when I was 15 years old. I had no idea what to even think all I knew was that I was completely terrified. None of us even knew what it was and what it did to those that had it. And it even stumped the doctors, they had no idea how to treat it because it was so rare. After a long time of research, I figured out what this awful disease was and how it affected people like my mother.

It has been about 3 and a half years since the diagnosis, but it still feels like yesterday. I still get the same awful feeling every day when my mom is having a hard day and can’t leave her bed. And on top of it I have been overthinking everything with big life changing events coming up in my life. In about 3 months I am going to be moving away to live on my own at college at Missouri State University where I am going to be playing softball.

It is an awful feeling knowing I won’t be close to her if she ever needs anything. My family has always been close, especially since my sister and I have always grown up playing sports. My whole family would always be at the ballpark to make sure they were able to watch us play no matter what. But even since my mom has been diagnosed, she is still our number one supporter on and off the field. She still goes to every single event, game, or even just practice supporting us with our hopes and dreams. Not only with sports but she goes to every single one of my school events too. She is the strongest woman I know and my biggest role model in my life. She teaches us how to be the best mother, best friend, and role model to those around us.

She is selfless, devoted, loving, caring, determined, and so much more.

She is the reason why when I grow up, I plan to do something in the medical field. I want to devote my time to helping others not only for them but for their families who are also affected by these awful diseases and other illnesses. And to help find the cures to help these families! There are hard days for everybody with whatever is going on in their lives, but the worst feeling is knowing that she has hard days almost every day and there’s nothing that we can do to help them. She comes home from work and is completely exhausted. I just wish there was something that somebody could do to make it all go away. Because of this I am going to major in biology so I can figure out what profession would be best for me and my skill sets in the medical field.

Since she got diagnosed I felt it was my job to step up with the stuff I was doing. My junior year of high school was the year most softball players get committed so I really stepped up my game hoping to make her proud and to make sure I could get an athletic scholarship somewhere that I thought was the best for me. In October 2020 I was lucky enough to get a scholarship to Missouri State University, which I was so excited about since I love the University and amazing staff but all I could think about was how am I going to pay for the whole cost of college. My mom still works full time even though the doctors told her she shouldn’t, but it’s because of that cost that she refuses to quit.

I am excited to take on the next chapter of my life but it is so scary, not because I have to grow up and be on my own but because I am going to have to be away from her.

Right when she got diagnosed she was given a time frame of about 10 years, now I don’t know exactly what that time frame looks like right now because I am afraid to ask. All I know is that every second counts, and you don’t understand that until there is a limit. But from this journey I have been able to take away certain important things about life, to never take anything for granted, to cherish every moment, to be happy, to be nice to everybody because you don’t know what they are going through and much more. I am graduating high school in 3 days and I am figuring out what it means to have to just leave the friends and family you grew up with when they were just a call away. I will be busy at Missouri State with early morning workouts, classes all day, then practice on top of that. So I plan to be thankful and cherish every moment I have now to talk to all of my family and friends before I leave. The thing that is getting me through this is my family, I know they are going to come to visit whenever they can and call and text me all the time!

Anyways, yes scleroderma has changed my life forever, but I know that we just have to take it one day at a time and help my mom out with whatever she needs. And I am just praying that they figure out a cure for this awful disease so other people don’t have to go through what my mom and other family members have had to go through. And I hope that my goals and dreams stay in motion so in the future I am able to say that I can help others in need and hopefully find cures and help them live long healthy lives. I still have faith they are going to find a cure for this!

And I know my mom can get through this, she is the most resilient person I know and she gives everybody else strength and hope.

– Emily