The weekend passed in a blur, really. The boys, Sophie and I drove up to northern California and met my parents at my aunt's beautiful house near Palo Alto. My aunt is very old and very frail, and of the four sisters, only the youngest (my mother) and oldest (Aunt Yvonne) are alive. My Uncle Charles, who lives in Mississippi is also quite old and fragile. My own parents are still so vibrant, and I know that I take this for granted. Our relationship has its ups and downs, but I'm so grateful for their active presence in my life, for their support and for their love. There's a terrible melancholy in leaving them, seeing how tied they are to my children and my children to them. The relationship between grand-children and their grand-parents is truly a love affair.

I felt grumpy over most of the weekend, precipitated, I guess, by the near 24-hour care of Sophie. I haven't traveled with her in years, and I know why. I had to be vigilant nearly all night because she doesn't sleep well and would have gone careening off the bed if I weren't there to wrestle her back down. It's difficult to not
miss what I insist on calling
a normal life when I'm out and about with Sophie. You must know what I mean.
I'm filled with a deep gratitude for my boys, Henry and Oliver. They have never lived
a normal life, either, yet they help me instinctually and uncomplainingly. I have worked hard to not let them think they are
responsible for taking care of their sister, but the older they get, the more understanding they are toward me, to the strains under which I operate. Sometimes I wince at their aide, wishing that it didn't have to be so. I struggle with that old cliche that well-meaning people dump on us.
They're learning such compassion! I worry that one day they'll be on a psychiatrist's couch, wailing about their stunted childhoods, their stressed-out mother, their sister who demanded so much attention. Those thoughts make me falter on the tightrope where I've balanced, for the most part, for nearly twenty years.
It is what it is, is another cliche. I can't do much better.
Other than the Night From Hell, though, Sophie was pretty good. She had few seizures and really enjoyed riding in the car up to northern California and then back home. However much I struggle against it, her identity and mine are entwined. When I surrender to that fact, I really do feel bathed in light, filled with gratitude for having the honor to care for her.