We always knew the day would come when I would be the only family member left dealing with my brother. God knows we discussed every aspect of my mother’s, and of my nightmares. We talked about my mother’s beliefs, her concerns for Douglas and went over possible scenarios that could arrive. But while we were regurgitating these thoughts, my mother was alive, able to make suggestions, and an integral part of my conversations. These talks we had could be unnerving or comforting and often illuminating. They were interactive and I was grateful for her honesty and so glad to have her input. After all, she was his big mother. I was only his sister.

This two way conversation ended with her death in 2013. Since then, I have continued to talk to my mother, knowing that I had internalized her in a special way. Obviously, I don’t get the verbal answers I yearn for, but I definitely feel her presence. We knew each other so well that some things were understood and did not necessarily need to be brought up . But where my brother was concerned, it was essential that we have the difficult talks about what would happen when she was no longer with us. What I could not anticipate is the way I would feel when I was left truly the “only one” making decisions for my brother.

As a child, I was Douglas‘s immediate role model, play thing, buddy and defender against nasty children who didn’t understand him. I physically whacked a neighborhood boy who saw Douglas as an object of ridicule whenever he was in the street. The kid told me he was going to tell his mother on me and I screamed “you do that! Bring her to me and I’ll tell her what her son does to defenseless children!”

As we grew up, my roles expanded to include that of companion, friend, teacher, social worker, speech and physical therapist, advocate, Direct Support Professional, legal coordinator, quasi-Nurse, and a host of other titles. I assumed these roles willingly and consciously. It would have been unthinkable for me to abandon my sibling persona and function any other way.