Thanks for the welcome and for sharing about your son as well. I'm not sure how it is in your situation, but I find that I can draw strength from the courage my son shows.
Since the diagnosis, he has so many specialist appointments and other allied health appointments that he is almost spending more time in doctor's waiting rooms than he does in school, yet his courage shines through. Eve when a procedure is scary for him, with large pieces of equipment and needles, he perseveres.
As he gets up and smiles at each day, I'm learning a lot from him.
My biggest piece of advice is learn absolutely everything you can about his diagnosis. I have proven doctors wrong and fired many people n some situations because I knew more than they did, and kept my son out of some unnecessary surgeries.