The on-guard, “waiting for the other shoe to drop” is indeed one of the hardest parts.
Trying so hard to make good decisions while taking my son’s wishes into account, and then trying so hard to not second-guess my decisions, or beat myself up if things don’t go well.
Trying to avoid the “what if” and “if only” thoughts.
Being so grateful for those times when my son slings his arm over my shoulder and smiles.
Trying to keep from resenting my friends’ “perfect” kids who are graduating from college, getting married, starting careers.
Wondering if I can make it through one more delusional conversation with him without just saying, “Are you kidding me?!?! That’s crazy talk!”
So sad, so, so sad that my son’s life has been intruded on by this dreadful and baffling disease, and so frustrated that he can’t seem to see that I and the doctor, and the social worker, and everybody else are trying, so hard, to help him pick up and continue on with a satisfying life.
Occasionally, stepping back to see that I am still standing, my son is incrementally improving, I still have my job, my marriage, and usually, my sense of humor.