Wait! Stop! I Got on the Wrong Ride: A Lennox-Gastaut Experience

When I was a young mom, I was not naïve; I knew that life has it ups and downs. I expected a Merry-Go-Round, and got a Roller-Coaster.

I thought that my life would go up and down, up and down, in gentle expected cycles of highs and lows. I didn’t anticipate the sudden terrifying plunges, wrenching curves and extreme changes.

I had certain expectations with the birth of my second son. We carefully selected his name. I remember thinking before he was born that no matter what his chosen career, Nicholas James Gremmert would sound strong and professional.

After his birth, Nick was so lethargic. Fear crept in my heart. Like most babies, he was always asleep or crying, except I couldn’t seem to comfort him. Feeding him was an issue from the start and throughout the first year, I was told it was “failure to thrive.” Some doctors even said that I had an overactive imagination and that there was nothing wrong with my baby.

Then the seizures started. Scary and unexpected, they changed our lives forever.

Nick is now 38 years old. He has been diagnosed with Lennox-Gastaut Syndrome or LGS, a rare and severe kind of epilepsy that typically starts in childhood. Children with LGS have several different kinds of seizures, often. Some children have experienced up to 150 seizures a day. LGS is also characterized by a resistance to medication, behavior disturbances, and moderate to severe cognitive dysfunction.

This condition is hard to manage, the common protocol is a multiplicity of seizure medicines with other modalities and treatments to try and control the seizures.  Individuals with LGS have an increased risk of death usually because of seizure related complications.

In the midst of the horrible experiences, we realized that we needed to hold on to the moments of joy. Even the biggest roller-coaster has momentary peace, usually at the highest and lowest points of the ride. We began to comment to each other when we noticed the genuine joyful moments. We call them our tender mercies.

We have met so many wonderful people because we have Nick in our life. We have experienced such extreme stress because we have Nick in our life. The highs are sweet and the lows are terrifying. Some days we thought that our time with Nick was nearly over.  Even today, I have no idea what the future holds for us.

Arden and I have developed the strength to stand in the middle of the storm and look for the calm that we know will always eventually come. Every moment that we have with our loved ones is precious. The memories are strung together like a cherished pearl necklace shimmering in the light of awareness.

We find joy every day. Every minute if we can. Sometimes we forget when the situation is particularly trying or we are exhausted. Then some moment of emotional sunshine bursts forth and we remember.

Try to remember that there is joy in the journey. Look for it.

About the Author: Eva Doherty Gremmert is a renaissance woman. She is a talented, published author, a successful business woman, a sought-after public speaker and a professional genealogist. Her first work of fiction, “A Cottage in Donegal. Mary Doherty’s Story,” was self-published in 2011 and has sold over 3,000 copies. It is an entertaining and evocative read written from Mary’s perspective. Her current project is a memoir detailing her journey raising her son Nick who was born in 1979 with multiple disabilities, and is scheduled to be published in 2018. Beginning this year, Eva has been publishing a blog on her website with short vignettes of her life experiences and lessons learned from parenting Nick. She owns a tax preparation and business development firm, founded in 1981. She’s assisted many non-profits over the years. Eva has researched and published five books on her family history and hosts two major genealogy research websites.She and her husband, Arden, have been married for 40 years. They spend their time between their homes in Carnation, WA and Carndonagh, Co. Donegal, Ireland. They have raised four amazing children and have ten beautiful grandchildren.

 


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