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.