Peabody88 - your post is thoughtful, insightful, and evokes a wisdom far beyond your age. Thank you for reminding me what is truly important. I promised my son a long time ago that i would NEVER stop fighting for him, that we wont stop until we have answers. I need to change my mindset around Mayo - maybe it IS the end of the road because we will have some answers. But if they dont (have answers), it is STILL not the end of the road. I promised I wont stop, and I wont.
I know it seems that I might be putting too much stock into a “diagnosis” - I know that a diagnosis is only our first step. Once we know what it is, I hope that that knowledge leads us to a treatment or at least management of the illness and symptoms. Right now, we have no real way to manage it - no foods, amount of sleep, medications seem to make it worse or make it better. Some days are better than others for him, but we have no correlating behaviour to work with. So frustrating.
Thank you again for your words. I am not sure what you do for a living, but I am hoping/thinking it is in some sort of field where you help people. It is your calling. I will return to your words in dark days. Thank you from the bottom of my heart.