Tonight, Katie and I are sitting on the patio of our hotel room, our first Rett conference complete. It will likely take time to process all that we experienced (and devote posts to) but I do know we met a lot of heroes and got a lot of hugs.
So many names from Facebook now have faces, how amazing to meet these people who have loved my girl from afar, hugs like you give long unseen family and hugs you got and gave of understanding, hugs of greeting, and thank you, each one a tangible essence of not being alone.
And heroes- the children, the parents, the doctors, researchers each raising our children to new heights, fighting, inching their way to success, whether it is holding something in their hand, braving travel to seek out an answer, a hope, or who move forward to find treatments while facing seemingly insurmountable obstacles of funding and staffing.
And, yes I will be doing posts about the conference, it could never all fit in one post, but I would be remiss not to mention three people here…First is Katelin, because today it was confirmed by three speech pathologists that they all believed without doubt that she can read. My super hero, despite all the odds can read, how amazingly wonderful is that?
But, I want to end with what has been my greatest joy at this conference… meeting the face of Neuren in James Shaw and Nancy Jones. And in the moment I met James, heroes and hugs combined. What more can a grateful mother’s heart do to express all that it feels? And when Katelin met him and he said “Hi, Katelin, I’m James, from Neuren.” And then something about Trofinetide, it was easy to see in her eyes and smile that he was her hero as well.
More about the conference later..
But, here you go, my favorite three heroes from the conference