Can you offer some wisdom for parents on guilt and fear?
Guilt is a very self-centered state of mind. It is about us, and when a loved one is ill we need to focus on their needs. Fear, too, is very narrowing. It makes every moment difficult and gives too much influence to the present when we need to be thinking about the bigger picture. Guilt is inevitable, of course, as is fear, but they are indulgences that we cannot afford to spend much energy on if we expect to have the stamina it takes to face this kind of challenge. Guilt and fear undermine the parental stance our kids need us to have, and our partners need us to have.
It may seem harsh to a parent to be guilted about feeling guilty, I know. It is the most natural emotion in the the world when your beloved child is in harm's way. Parents are MEANT to feel responsible and indeed we can't be good parents unless we stand ready to do that and do it at a moment's notice.
Fear, too, isn't something that is avoidable nor is it dysfunctional. Who isn't FRIGHTENED OUT OF THEIR MIND by having a child develop a life-threatening and mind-altering brain disorder?
All this is why it is so very heroic and PARENTAL when we quell the fear and stuff the guilt and stand in the storm. While fear and guilt are natural, knowing that they are probably your greatest foes is an even higher level of Super Parenting. It's really hard. It's the hardest thing most people will ever do. There's moments when it just isn't possible. But it still has to be done and the harder it is the more critical it is. I am filled with admiration and humbled by parents standing in the storm.