My son Nick has a rare, debilitating, life threatening disease called Lennox Gastaut Syndrome. For over 38 years I have been consciously aware that with 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.
I have been invited to submit articles to a couple of online publications. I am pretty excited about this incredible opportunity. This article was recently published on the PatientWorthy.com website. Please share this blog if it resonates with you or you know someone who might benefit from it. If you want to get a copy of the book as soon as it is available, be sure to sign up.
2 Comments
I fear for my son’s life every day. I have nightmares about it, even. I hate living life in fear but there really is no shaking it. The fact that just having the title of LGS puts them in a greater chance of SUDEP. It’s scary as hell. I’m sad to hear the passing of the 12 yo LGS warrior–A life taken way too soon.
Eva, you inspire me. Thank you for sharing.
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