I've been consumed with sadness and grief these past two weeks -- my thoughts revolve around my bereaved friend and her family. Her husband was a kind man with a generous heart. When Oscar was first born and I was steeped in the shame and grief of having a child with a disability, he did not shy away. Instead, he gravitated toward Oscar. He would gather my floppy and unresponsive infant from my arms and hold him, calling him "Sweet Oscar". For nearly two weeks now I've been hearing his voice softly calling "Sweet Oscar! Sweet Oscar!" I hope I thanked him. I hope he knew how important that was to me. I hope he knew that gestures like his opened my heart to love and the possibility of a happy life, even with PWS. I hope he knew.
I spent the weekend in their new hometown, amongst throngs of friends and family that gathered for his memorial service. We supported our friend the best we could, but then we had to board our plane for home. Leaving there was one of the hardest things I've done, ever, and I found myself doubled over on the sidewalk outside her house sobbing "I can't do this. I can't leave her. I -- can't -- leave -- her!!" I just wanted to crawl into her bed, wrap my arms around her, and shield her from the frightful, searing pain. Patient friends and her wise mother helped me see that we had to leave. She needed rest and quiet days with her family. This will be a long journey and leaving her then was not abandoning her forever. We will go back, we will listen, and we will remember. I think that is all we can do.