Hope without help is not merry
Hope, to me, isn't just an attitude of optimism and belief in full recovery -- though those are essential for parents and clinicians to hold and keep. Hope is active. Hope is action. Hope is confident, assertive, and courageous.
Hope is also, at times, painful. Painful to hold for a patient who is in pain and has to experience distress and discomfort in order to recover. Painful to keep sight of when the patient feels undeserving and angry and rejecting our hope -- even finding it insulting. Painful to hang on to when those around us think it would be better for us to "let go" or "leave it to others."
Hope is different for loved ones than it is for patients. Patients don't have to have hope -- that is OUR job until we can. We should not require it, be disappointed in our loved one for not having it, and not wait or change our actions because we're waiting for it.
Hope, when offered as the only thing we can do, can be a cruel thing to ask of a parent. To hope we need more than platitudes and positivity: we need a plan. The plan may be to do something, learn something, call someone, stop doing something, do more of something -- or even to consciously and mindfully do nothing -- but it still needs to be a plan, not a capitulation.
Much of what parents are told to have is empty hope, and I'm weary of it. It can be one more way to say "back off" or to criticize us for what we have not done or want to do. It can be a way to tell us to stop feeling angry, or showing our distress, or asking uncomfortable questions. My job as parent is to hope, absolutely. But not just to hope, and not to hope into the ether. My hope is part of a plan that includes my action as well.
For a little bit of hope with a plan for the BIG picture: