There were many things that I loved at the second day of the LGS Foundation Conference in Orlando. There were thought provoking presentations on various topics including LGS research, new drug therapies, surgical options, devices, plus genetics and precision medicine. We had a great banquet and dance. It was a wonderful day.
I took a picture of Nick in front of one of the most profound experiences I had today. It was a small project each of the conference attendees were invited to participate in. On the first day the board was black and one by one conference attendees were given magnets to take home. In the white space left after the magnet was removed, we were asked to write in the name or names of someone who had been extremely supportive on our journey raising our child with LGS. My magnet was removed and the lower section of the ‘r’ in power was revealed.
Reading the names of the various people written on the board is inspirational. The entire saying on the board is “the power to change a life is in each of us.”
Contemplating this concept was the profound thing. I thought of therapists, doctors, friends, and neighbors in addition to family members, teachers, school employees, work colleagues and caregivers. The list in my head is very long.
I am grateful for everyone who has been helpful to us over the past 38 years as we have raised and cared for Nick. Today I learned of a program sponsored by LGS Together called Change Agent. Starting in January, we in the LGS community will have the opportunity to nominate someone who has been a supporter of our LGS family. A Change Agent is a person whose help or kindness has made a difference to our family. What an amazing idea. I asked if I could nominate more than one person and the wonderful answer was yes.
I realized today that we don’t all need an organized Change Agent program to decide to recognize the people we know who have helped lift our spirits or made our life more positive. Take up this challenge, even if you don’t have a family member affected by Lennox-Gastaut Syndrome. Decide that you are going to honor and recognize those people who have been Change Agents in your own life. We can change the world, one sincere ‘Thank You’ at a time.
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