What Would I Do? A Lennox-Gastaut Story

My son Nick has a rare, debilitating, life threatening disease called Lennox-Gastaut Syndrome (LGS). To learn more about LGS, click here.

For over 38 years I have been consciously aware that because of LGS, he has an increased risk of unexpected premature death. There is even a name for it: SUDEP, sudden unexpected death from epilepsy. This hangs over me every day. When the seizures don’t stop, when he oversleeps in the mornings, when he is sick with a normal illness, when he…The fear is constant.

Last week a Facebook friend’s son did pass away. He had LGS. He was 12. I have cried for her and her family. I have sent her messages of support. I have prayed for her. I don’t know what I would be doing today if it was one week after my son had passed away. The funeral would be over and everyone would be going back to their own lives, but my life would be completely changed.

I have experienced the grief of losing close friends and family members. I understand that, but this is different. It is the loss of a family member, a child, and someone who is completely dependent on you. It is also a loss of one’s job, and daily duties. It is even the loss of a portion of personal identity as a caregiver and an advocate. There is potential guilt of, could I have done anything more for my child? Was there something I didn’t do?

The basic routine of everyday life would immediately change. Loss is profound and I hope that when the day comes that I am walking down that path that I will remember the joyful moments and I will laugh in the midst of my tears.

Since none of us know exactly what we will do when we have this experience, let’s all commit to suspend judgment and avoid criticism of others as they are walking through the dark days of their grief.


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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