Once again I have been perseverating on how Sarah died, and to a certain extent on how my mother died, which fills up the extensive mental real estate not preoccupied by the subject of where Sarah is now. I know that Sarah most likely died during a seizure. Her death certificate states “Asphyxia” as the… Continue reading Obligate Aerobes
Tag: spg4
Deep winter thoughts
I’m not in a good place this morning. That business about letting go of resentment that I wrote about a few days ago seems to have come back to mock me. I have finally gotten around to watching a webcast of a seminar at National Institutes of Health last spring, ‘De Novo SPG4 Inaugural Symposium.’… Continue reading Deep winter thoughts
Guilt
Lately it occurs to me that I’ve moved past those early feelings of bewilderment, denial, and shock that were so hard. There was almost an electric shock to my body when I would realize anew that Sarah was dead. As if I were being zapped awake. I had irrational thoughts that she would reappear, that… Continue reading Guilt
Big questions
One of the issues I wrestle with since August 18 is whether I am still a mother. When your only child dies, are you a parent anymore? Max and I not only really, really enjoyed being Sarah’s parents, but because of her progressive and rare medical condition our whole lives basically revolved around her care.… Continue reading Big questions
The First Year Without Sarah 