Oliver and I, along with my dear friend Cara and her two daughters, drove up to Cambria yesterday. We''re spending two nights here, just hanging out and doing -- basically -- nothing.
It occurred to me the other morning when I was talking on the phone to my friend Christy Shake that the only way to survive the life we live as caregivers to children with seizure disorders is to replenish ourselves in any way we can and to do so regularly.
I know this is a privileged thought -- I know that there are many people who are out there doing the work we're doing who don't have an opportunity to get away, who dig down continually to find strength to keep going. I know, too, that some people just won't get away or refuse to get away or believe that they can't get away because there's no one who takes better care of their child than they do.
I don't know what to say to that other than it's become about as necessary to me to get away as it is to keep doing what I'm doing. As necessary and in order to live, even. Cognizant of my privilege, I can tell you that it's only been very recently that I've "gotten away" and not felt guilty about it or worried that something very bad is going to happen to Sophie. I'm going to say those things without judgement or explanation and will ask you not to as well. Tell me anything, that is.
Caregivers of severely disabled children, especially those who've been doing it for decades, know some things and we know them deep. Things haven't gotten easier even as I've learned how to dissociate and then come back. I don't know the word acceptance even as I surrender. The word toll. Taken.
There's everyone and then there's us.
Three things:
The cumulative years
The present
The projection into the future
I feel joy in my core even as that deepest part is dark. Memory.
I had a long conversation with an Italian artist in his studio amongst sculpture and paintings. Angels and toreadors, winged things, dancers and an architect, the suggestion of things broken and things free. Sophie in all of it, as was Carl and his birds. The words wing and soar. I'm most myself, both consumed and generative, in art.
Nature, too. Respite. Respire.
