Life, Love, and LGS

Life can be busy, and caring for a child with Lennox-Gastaut syndrome (LGS)  can dramatically increase the complexities of daily life. Some may even say that life with LGS is like a carnival, complete with roller coasters, juggling acts, and spinning plates.

Take a moment to read about how some LGS caregivers have found a way to navigate life with LGS with love and laughter.

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Riding the Highs and Lows of This Scary, Unpredictable, and Occasionally Exciting Ride

Natalie, whose daughter Lili has LGS, hates roller coasters and always has. They terrify her. But here she is, on an LGS roller coaster ride. It takes her up, down, around, and backward. So, she coasts when she can. For Natalie and her family, this means taking times to fully enjoy the time of lower seizure activity and being prepared for the next twist that comes their way.

With every negative twist on the LGS roller coaster, Grace, whose daughter Teagan has LGS, remains optimistic that there will be something postive around the next bend. 

For the first few years, Rachel, whose son Andrew has LGS, found the LGS roller coaster fast, terrifying, and unrelenting. Everything felt out of control. Then, about 5 years ago, the ride started to slow down. With the right management plan, Andrew achieved better seizure control. Now, they ride the roller coaster at a slower pace but are ready for the next twist that comes their way.

Karen, whose son Dan has LGS, did not willingly jump on this wild ride. But knowing what she knows now, she would not get off for anything. The ups, downs, twists, and turns can be difficult to comprehend and feel impossible to navigate. But every success she and Dan have achieved makes it all worthwhile.

While Andee, whose son Kannon has LGS, knows that her family will never get off the LGS rollercoaster, she knows that with the support they get from friends, family, and a team of healthcare providers, this is one ride they will not be taking alone.

the juggling act

Life With LGS, the Juggling Act

Just when Jennifer thought she had everything under control, everything changed. Life threw her a curve ball. She and her husband divorced. She also moved to a new town and a new home, where she had to find new doctors, new friends, and create a new routine to care for Theo, her son with LGS.

Jennifer says she's juggling more balls than she ever thought possible. But she's learned that she is strong, resilient, and resourceful. If a ball drops, and eventually it will, she'll just pick it up. Life will never be perfect. And sometimes good is good enough.

Plates spinning

Keeping the Plates Spinning

Andee has many plates spinning at any given time. Each plate represents all of the different roles she plays in caring for her son, Kannon—researcher, nurse, cook, advocate, and educator. Andee also has a demanding full-time job outside of the home, which sometimes takes time away from the role she cherishes most, being Kannon's mom.

Andee's goal is to be Kannon's voice and to give him the life he deserves. She strives for consistency and to keep each plate from falling to the floor. She also knows that while LGS changed the way she and her family love and live, every choice and sacrifice has been completely worthwhile.

ready for the unexpected

Being Ready for the Unexpected

Even without LGS, life is busy. Like the Whac-A-Mole arcade game, something unexpected always pops up. There is always something to do and someone who needs your attention.

Natalie realizes that as  a caregiver to a child with LGS, as a wife, and as a friend, she rarely has the luxury of focusing on just one task at a time. That's why she plans for the expected and the unexpected by:

  • Being organized
  • Communicating clearly with others about how they can help
  • Taking time alone to recharge (it's not selfish; it's important to take a mental break)

While no one person can be everything to everyone all the time, finding balance while multitasking can certainly help.

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