Beads of Courage (beadsofcourage.org) is a program that helps give children ownership of their medical battles. Basically, through the program, a child gets beads for each of the procedures and medical support they endure in their fight for healing. They recently added a chronic illness program to their list, so I've looked into it again for Lily. That, and I think she'd enjoy playing with her beads with her hands, so they'd have some meaning for her.
Beads of Courage sent me a list of what colors for what events so I could send in a request for Lily. It's a rather extensive and somewhat overwhelming list (they allow estimates to keep it simple for families)... and Lily qualifies for every single category on the standard list. Every single one. In her first year alone.
I'm floored. Maybe not all of her supporters are as astounded by this as I am, but I don't see all of that when I look at my daughter. I know she's alive because of a miracle. A big miracle. And I know how hard we fought to get that miracle because I was right there with her, holding her hand the whole way. But when I look at Lily, all I see is a little girl who loves life, loves her family, and just simply loves.
I think that's what real courage is. Loving life in spite of everything trying to stop you. So I'll submit her history via her own bead journal, because Lily has amazing courage. And I really do think she'll love her beads.