I have never been someone who makes New Year’s resolutions, but this year I have decided to break that tradition. As a start to this new decade, my resolution is to let go of things that no longer serve me.
We all have negative people or situations that hold us back and can turn us into something we don’t want to become if we allow them to. We may feel bound to family and friends and feel obligated to remain, no matter how badly we are treated. We often find ourselves staying in those situations because we think we can resolve them or make them better in some way, or that others will change their approach and attitude. But, if someone doesn’t respect you, it is okay to respect yourself enough to get up and leave the situation. Some things are simply outside of our control, and letting go is not a failure. It is an act of acceptance and can be empowering.
As a part of this resolution, I am going to consciously focus on letting go of the fear of my son’s future with Dravet syndrome. In just a few weeks he will be 20 years old, which means I have been living with uncertainty and many fears – some irrational and others legitimate – for almost two decades. While everyone has challenges and stresses, being the primary caregiver for someone who has a chronic and severe disease that is constantly changing and evolving like Dravet syndrome takes a significant toll on the caregiver’s overall well-being and mental health. My son’s daily challenges are increasing as I am getting older and weaker. There is a good chance he will outlive me. But, instead of focusing on the many negatives and fears, I am going to make the decision to celebrate the good moments when they happen. I am going to try to avoid irrational fears and I am going to accept that in moments of legitimate fear and difficult decisions, the decisions I make will be my best, with the knowledge and resources available to me at that time.
In 2020, I am going to acknowledge all of the negative factors in my life that are holding me back or weighing me down. I am going to make a conscious effort to accept what I cannot change. I am going to forgive myself and anyone who has held me back or wronged me. And then I want to move forward in a way that allows me to embrace the things that are important to me and which bring me joy. I want to create space in my life for the people and activities that make me happy and fulfilled. We all have a finite amount of time – both on a daily basis and in our lifetime. I encourage each of you to reflect on what will make you happier and bring you peace, and make that a priority for your life this year and into the future.
Mary Anne was a founding member of DSF, stepping off of the Board to take the position of Executive Director in 2012. She is a passionate advocate for the Dravet syndrome community and has served in various capacities for the community prior to the inception of DSF in 2009. In addition, she currently serves on several epilepsy working groups, including the Epilepsy Leadership Council.
She has owned and managed several small businesses in the private sector, spanning over 25 years. This business experience has translated well into her role as Executive Director. She is responsible for the overall organizational management and has continued to expand programming and fund development for DSF.
Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome. It is her son who drives her to be a catalyst for change within the Dravet syndrome community.