Thursday, April 5, 2018


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.

Everyone forgets that Icarus also flew, the poet Jack Gilbert wrote.


  1. It does take it's toll, this caregiving. The future is what scares me. And the present. I survived the past.

  2. The toll is great with extreme Parenting and Caregiving of anyone, whether Adult or Child. The respites, if it is possible to take them, and often it is just not, MUST be taken when they are available... even if it's difficult not to feel some guilt, which I also often do and I'm not exactly sure why? The Photography was breathtaking and I'm sure this was restorative to the Soul, I'm so Happy you took this respite with Family and Friends and graciously Shared it here in the land of Blog.

  3. I am grateful for your ability to get away, to restore and recharge and return. In this, too, you lead and inspire. Oliver is growing up to be another handsome young man. Such character in his face.

  4. Good to know you have experienced a measure of peace during this restorative time. I can see it in the portrait of you and Cara on the wooden walkway. I can see my why one of my oldest friends, who keeps to herself and whose life has had more than its share of trauma, moved to Cambria after being evacuated from her home in Santa Margarita during fire season a few years ago. The beauty of those spring hills and meadows and of the ocean is sustaining. Simply looking at your photographs lifts my spirits.

  5. I love this Elizabeth your joyful face all of it. Any time you need an island get-away my house is yours. I can make myself scarce for a weekend and you would have the forest and the beach (an eight minute drive from here) to yourself. Let me know. I will leave the fridge stocked the pantry open and the light on.
    Big Love,

  6. It’s people like you that keep me wanting to do a better job. If it only lightens your load by an hour, it’s worth it. I only wish it could be so much more.

  7. Read this as I ate pizza, alone, in a lovely Airbnb. Because... respite.

  8. I believe that it is a magnificent triumph that you have been able to find ways to care for yourself regularly without guilt. No judgment here. Only love.

  9. I am so glad you've been able to get away, and to such a spectacular place. (I don't have a clue where Cambria is, so I'm going to look it up as soon as I write this comment!) I can't pretend to understand all you go through as a caregiver, but I can see how respite and restoration would be essential, privilege be damned.

  10. I echo everyone's comments, especially kario. These photographs are gorgeous. It is amazing how restorative mother nature is. Even a small amount of time in the wind, on the shore, hiking the hills, lifts a giant load from our shoulders. So glad you are able to enjoy it with friends and family.



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