NH – Part of what makes this so hard is that you are still in the pioneer group, and you live in a world that doesn’t know about this w/d syndrome. But, there will, unfortunately, be millions of people following in your footsteps. They will get more validation and support. You might even help them.
This is a shockingly difficult experience, but it absolutely, positively gets better in every way, and then comes to an end. And you will be happier and stronger than before it happened. Be as compassionate to yourself as you can.
Luc has a very good idea about giving your mother information and support – to reassure her and help her to help you.