First time poster, recent SZ dx of our 19 year old son. Very rough prior 10 years. Worst thing is the sense of loss but without a way to grieve with friends and family, who can never understand. We basically have it now confirmed that the son we thought we had, with all the dreams and opportunities, is gone. Reading these posts is helpful to me because I’ve felt so alone in this loss.
IMHO, the death of a child might be easier. With a tragic loss of a child, as a parent you experience a marked event, relevant empathy, and stages to move through to find peace. Of course it’s horrific. So bad that the death of a child is considered one of the harshest losses that causes many families to self-destruct.
But, to me, the loss of a child to sz seems extremely cruel because we all got to see them ‘before’ it hit. The friends they had. The love. The athletic ability. The hobbies. The passion. Gone.
Replaced with images of chaos, with physical and emotional scars, with such deep pain.
And we 1%’s are left without a public event, without empathy, without any acknowledgement of our loss, and without any means to process through our grief. And we get the extra bonus of trying to silently and secretly managing the ongoing care of a sz patient which is frightening, exhausting, expensive, and time-consuming.
To me, having a child with sz is possibly one of the most difficult pains a father (or mother) or family might possibly experience.