When Edda was first diagnosed with Rett Syndrome, my brother Donald, sent a lovely letter to one of my favorite advice columnist, Cary Tennis (who now is undergoing treatment for a rare cancer) from Salon.com asking for general life advice on my behalf. You can read the letter: here. I read it at least once every few months and I read it again today.
There is a part that says (“I” is Cary, the “sister” is me):
But I try to do more, too. I also try to sing the song of how what we are required to do is always a gift. I am singing that song right now, standing under your sister’s window in the snow.
It may be a gift we don’t like — and now I am singing to you, sister — but we feel obligated to act grateful. I don’t know if you believe in God or not, or a benevolent force, or anything beyond yourself, but in cultivating this feeling I am talking about it helps to live in the conscious presence of something beyond yourself, something that you are in essence working for, so you can say, “I’m doing this for you, whoever you are. I’m lifting this burden for you.”
Because otherwise at times it’s: Why lift this burden at all? Why not put it down in the snow and walk away?
Sometime I read this and I agree with this and other times I read this and I think that it’s complete crap. All I know is that today I wanted to take Edda and leave Rett Syndrome in the snow and walk away. Nothing particular happened today – I took Edda to the dentist and the pediatrician. Both regular check-ups and both practitioners awesome at what they do and are familiar with Edda, but just the lifting, calming, explaining, questions and planning all wore me down today.
It’s also strange how these very emotional moments are interspersed with almost completely superficial choices that one has to make, Coldwater Tide or regular Tide? Homework now or later? Chocolate or vanilla ice cream? White or green tile?