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Riding The LGS Roller Coaster

April 3, 2019

Up, up, up you go, gripping tightly to the lap bar in front of you as if your life depended on it. Click, click, click you hear below, like a time bomb that could go off at any minute. You’re helpless to stop the progression. You dread what comes next because you know the bottom will drop out, and you’ll be dropping like a rock. How fast will we go? How far will we free fall?

 

The first time I remember the Roller Coaster drop was probably on our son’s third birthday. He and his baby sister had been safely tucked into bed when the phone rang. It was our pediatrician calling to tell us that he had the results of the EEG Danny had after we reported our observations. “Abnormal” was the only word I heard, though I know our pediatrician was gentle and kind. Somehow, as the roller coaster dropped dangerously fast, I comprehended that Danny would be admitted to the hospital for additional testing and monitoring. I hadn’t realized I was even on this wild ride yet and here we were holding on for dear life, the life that we thought we knew.

 

 

The ride was rocky and it seemed to twist and turn through minefields while dropping and jerking suddenly without warning. “He might do just fine,” they said. “There is medication for epilepsy." Or... they said more ominously, “he might regress developmentally and die before he reaches the age of ten." The roller coaster car dropped faster and farther, leaving us breathless and barely able to hold on. After that initial hospitalization we took home a little boy we hardly recognized. His behavior and temperament were affected by the medication he was now taking. Is this a carnival ride? A bad dream? How can we get off this crazy coaster?

 

At first it seemed like the sudden drops on the roller coaster continued to be frequent and furious. They came in the form of stalled development, no real diagnosis, treatments that seemed like darts thrown randomly at a moving target, a childcare provider that couldn’t adapt to our new reality, a woman who told us our child was not welcome at church and unexpected hospitalizations. We thought we were the only ones on this wild and unwelcome ride. Still we held on tightly.

 

There were glimmers that the roller coaster might slow down or even take a turn in a more hopeful direction. We attended a national epilepsy conference and found a friend. We searched the state and country for the best possible experts and tried everything we could to stop the seizures.

 

During one hospitalization when Dan was about six, a doctor said, “with his Lennox-Gastaut Syndrome…” Wait, what? Did he just give this roller coaster a name? I thought the bottom dropped completely out. I had read the single paragraphs about LGS in the books and other literature of the time. LGS was definitely not the ride we signed up for. The limited information I did know indicated the outlook was grim. When I talked this diagnosis over with another health professional, she helped me look at the characteristics of LGS. It was then that I understood and it gave us a name for what we already knew. The LGS characteristics of frequent seizures of multiple types, cognitive impairment, and abnormal EEG with slow-spike and wave discharges all described our son. Now the roller coaster had a name. Were there others riding this coaster? How could we find them? What can we do to help our son now that we know exactly what roller coaster we are riding?

 

Still we gripped onto the lap bar tightly as we tried every available treatment, navigated more hospitalizations and trips to the emergency department for lacerations, broken bones and teeth, and episodes of status. We learned about seizure types, special education, helmets, and adaptive equipment. So many things we just didn’t want to know…and never thought we would need to learn. The wild ride continued and we began to realize we were going to be riding for a long, long time.

 

We decided we’d better learn to ride this roller coaster. We would CHOOSE the way we responded to the twists and turns, RESPONDING rather than REACTING to the sudden jolts delivered by LGS. INFORMATION. We needed information. The more we know, the better our response can be. SUPPORT was going to be essential. We began to form “Team Dan”, consisting of family members, friends, educators, health professionals, and more. We taught the team about our son, LGS, and our needs as parents and a family. We started to take control of the LGS Roller Coaster.

 

Don’t get me wrong, the ride didn’t calm down. There were more surprises and heart wrenching situations than I can describe, but we were starting to embrace the ride rather than fight and resist it. We figured out how to laugh. We found the LGS Foundation. We were not riding alone. There are others. Information and resources are available. There is HOPE.

 

We decided that we would measure our world in “quality of life” terms. Is he safe? Is he happy? What is he learning? What is there to celebrate? Are we safe? Are we happy? What are we learning? What is there to celebrate? The mission of the LGS Foundation is to improve the lives of individuals affected by LGS through research, family support, and education. We consciously CHOOSE to support that mission at home and across the world.

 

We’ve been riding that LGS Roller Coaster for over 27 years.

There are still twists, turns, and drops. There are rough, rough days. But sometimes, sometimes we actually take our hands off the lap bar and ride, raising our arms high in the air with smiles and laughter, embracing the ride and the many, many gifts that have come along with it.

 

What about your roller coaster ride? What is one step you can take to RESPOND rather than REACT to the twists, turns, and drops? What do YOU have to celebrate?

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