You learn to expect the unexpected. That’s a phrase caregivers have used to describe how they adapt to life with Lennox-Gastaut syndrome (LGS). Learning to accept the roadblocks, seeking the support of others, and finding the strength you never knew you had are all part of the journey.
“One of the things that years of having a daughter with LGS has taught me is acceptance of my role as a mother. I had to face the reality that mothering a child with LGS is completely different than what I had hoped for and wanted. It’s different and always will be, and once I was able to come to that point, it changed our lives for the better.”
– Elizabeth, mother of young daughter Spencer
“Every day for us was moment to moment. We had talked about how to make the most of every single day and really try to live in the present moment because the future was so uncertain. We were searching for members of a team that we could build around Dan that would be the most positive, supportive team possible. We started to refer to that team as ‘Team Dan’ because we wanted to allow him to experience life at the very fullest.”
– Karen, mother of adult son Dan
“When Elizabeth was diagnosed, I was very shy. But with her having LGS, I did things I didn’t think I’d ever be able to do. I have gone to conferences and talked, just in the audience, but I would’ve never done that before. It brought me out of my shell.”
– Lucinda, mother of teenage daughter Elizabeth