Aidan Steinbach

I am fundraising for the American Society of Scleroderma Research. This is a cause close to my heart. 

When I was 7, I lost my mom to scleroderma. Scleroderma is an autoimmune disease that causes inflammation and fibrosis (thickening) in the skin and other areas of the body. There is no cure. Those with advanced scleroderma almost always die.

My mother was a thoughtful woman. A woman who impacted my life immeasurably. 

Lots of people wonder why I speak about my mother in the way I do. How could she have so fundamentally affected my life if she was only alive for 7 years of it? I get it, it's kind of confusing. 

My mother was born in Philadelphia to a not so well-off family. What she did have was the endless love of her brothers and her parents. That and one hell of an Italian attitude... She worked her ass off in order to get into Yale, go to Penn and UNC. Later in life, when she was diagnosed with a terminal illness she did not quit and she did not give up. Instead, she dedicated her life to helping others. She founded numerous support groups, still made time to volunteer at my sister and my schools, and still was the best mother a boy could ask for. 

After several years and numerous battles, her illness took her life on October 11, 2008. She left behind my father, my sister, and myself. But she didn't leave us alone. My mother was a very thoughtful woman. She knew that she would be leaving us much earlier than any mother wants to leave their children. She knew that she wouldn't have the opportunity to coach us through life's problems like mothers so often do. So, being the brilliant woman that she was, she found a loophole. 

She left my sister and me a gift for every year up until we turned 18 and then one for our high school graduation. Each gift was an object but more than that it was a lesson that she wished she could've taught us. Today, I am going to tell you about some of those gifts and the lessons that she has taught me from beyond the grave.

My mother left me a compass because life is confusing. We often lose track of the path that we are supposed to be on when navigating life. It is easy to get distracted by issues, pain that knock us off course, or simply lose ourselves as we age. She gave me a compass to remember to always find my true north. To figure out what truly drives me and what my goals are- then to chase them relentlessly. 

My mother left me a Swiss Army knife because it is important to realize that I am not just one thing. Like everyone else, I need to be multi-faceted. I need to be tough but at the same time able to express emotion and be loving. I need to know when to stand my ground and be firm and at the same time know when to realize my wrongs and listen to others. 

My mother left me a couple of ties because people will judge you first on your appearance and second on your character. One of the most important things you can do in life is taking the first step in showing who you are by appearing as you want to be perceived. 

My mother left me Hardy boys' books because she wanted me to be curious. She wanted me to question why things are the way they are. If I think something is wrong I should go pursue it and figure out if it needs to be fixed. These books are a huge reason as to why I love innovation. 

She left me a watch because time is the most important thing in the world. Is the truest nonrenewable resource that we have and once a second is gone we will never get it back. She wanted me to remember how important time is and to be conscious of who and how I spend it with.

She left me a Judy Blume novel to remind me that I am different. And that's OK. They will be hundreds of people I meet throughout my life that will be different from me. And that's also OK. Differences are to be celebrated and embraced rather than discriminated against or attacked. 

However, the most important lesson that my mother taught me was through her life. Resilience, persistence, ambition. My mother had every excuse to give up. Every excuse to throw in the towel and just let death sweep her off her feet. But my mother was a fighter. And every day she inspires me to be a fighter. To refuse to give up no matter how daunting the odds seem. She is and always will be the greatest lesson that she left me. Every day I see her in the mirror, my sister, and in my father. Her legacy is not constrained to the papers she wrote or the people who knew her story- her legacy lives on in a fiery blaze within each of the lives that she touched. 

She taught me that life is not simply about being alive, life is about living.

There are so many kids like me. So many children without mothers or fathers who were so cruelly taken from them. Please help me as I raise money to support such a meaningful cause.