Blog SMA Awareness

Your mindset determines your journey

Do your disease and disability have an effect on your mental health? This really got me thinking about what determines our thoughts. How does our mindset dictate the outcome and our journey?

As children, we are so carefree, and we never really understand all the different perspectives of life. We spend a lot of time imagining our futures. However, they may not always be realistic ideas. We are told that we can do and be anything we want to be! In one sense is true and in another is highly unrealistic. Don’t get me wrong, I fully believe that we can be anything as long as we work hard and set our minds to it!

So many questions

You have five years to live… Being given the life expectancy of five years old can give you a lot of perspective on life. However, I was given an expectancy at an age when I didn’t fully understand what was happening. I’m extremely lucky that I was so young and had so little understanding of how hard my fight was going to be. Not everyone in my family had that luxury. My older siblings were old enough to understand but also so young to have been given that responsibility. My parents had the responsibility of being parents. But they didn’t have the preparation to be parents to a child with special needs.

People often ask where my hope, positivity and strength come from. My answer often is from my parents and my family. They had to make the original decision for us to fight. They were told to take me home and enjoy the time that we had. I was too young to understand what that meant. They made the original decision that we were going to beat the odds. As I have grown up I’ve come to understand what everything means. The fight has become my fight but I’ve never had to fight alone

Let’s get planning

I have always been a planner and I’ve always wanted to understand what my future entails. It is extremely difficult to plan for a future that you don’t always know is guaranteed. I often use planning in order to have some sort of control over the things that I can control in life. It is important to know that you have the possibility of a future. I have always been someone who believes that I can do anything that I set my mind to. As I get older I have come to understand that certain elements may not be so realistic. My future is still going to be bright and amazing it’s just gonna be a little bit different.

I struggle with understanding that not everything is possible and that certain things may not be within my reach. I need to plan for some of the inevitables. For example, at some point, I’m going to need a career. I know for a fact that I cannot live on my own and therefore I need to plan for a future both financially and emotionally. Personally, it is understanding that my future may not look like everybody else’s.

I don’t wish for another life, I don’t wish for a life where I could walk. If I hadn’t lived this life then I wouldn’t have had the experiences that I’ve had. A part of my journey has made me into who I am. I wouldn’t have wanted to lose those experiences.

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