I Wish I’d Known That...

Looking back on their experience with Lennox-Gastaut syndrome (LGS), caregivers share something they’ve learned or something they wish they’d known at the beginning of their family’s LGS journey. 

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“In the beginning, everything was so new and I was on a mission to get him any kind of help I could. And as the time went on, I found that if he was in a place where he was happy and content, that’s what mattered. I just realized that if he’s happy then I’m doing what’s best for him.”

—Rachel, mother of adult son Andrew

“I think it’s important to be a voice and to make sure you really advocate for what’s best. Just because somebody gives you a piece of information, it might not be what’s best for your child. It’s really important to push for what you know your child needs, whether that’s a seizure protocol or a better spot in the classroom or something new on an IEP [Individualized Education Program].”

—Andee, mother of young son Kannon

“For me, having my career balances the push and pull of LGS caregiving and lets me contribute and add my talents in another arena. I think it’s important to really try to designate time for this and time for that; at work I’m at work, and when I get home, I can transition to Dan time.”

—Karen, mother of adult son Dan

“There is hope. And there are so many people out there who are working through the same thing, who can identify with what you’re going through, and who can offer support and encouragement to you. So just keep pressing on. You’re doing great.”

—Darla, mother of teenage son Aaron

“When you’re in the trenches as an LGS caregiver, working really hard and in unknown territory, it’s important to know that the experiences you’re having could be something other people learn from, whether they’re good or bad. That gave me a lot of confidence.”

—Diane, mother of teenage daughter Lindsey

“My husband and I help each other out through the day and on the weekends. We just sort of trade off and support each other with whatever Lili’s needs are. It’s really important to communicate with each other if one of us needs a break. Just talk to each other, and say how you’re feeling.”

—Natalie, mother of teenage daughter Lili

“With our daughter’s LGS, there are so many different kinds of seizures and they happen a lot during the day. One of the most important things for us is counting her seizures and tracking her everyday life—like when she eats and those kinds of things—to see how they factor in with her seizures. Using technology has made it a lot easier to capture that data.”

—Grace, mother of young daughter Teagan

“The most important thing our family has learned is that everything can change in a minute. You can plan something out, and then she has a seizure and plans get changed. You have to make your own normal and just go with the flow.”

—Lucinda, mother of teenage daughter Elizabeth

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