Thursday, November 3, 2016

It's NaFaCaMo, Folks! Day Three

Sophie the Phoenix and her driver, The Pile of Ashes


  1. LOVE Contrary to what some believe (and probably don't even realize), most of us love our children with disabilities as much as we love our children without them. This means we are committed to not just their welfare, but also to our responsibilities as parents. They are still our perfect babies. This is why when people say they couldn't do what we do, we roll our eyes and growl.
  2. GRATITUDE I am grateful that Sophie has a father who loves her, has always loved her and been a wonderful caregiver to her. I am grateful for my sons Henry and Oliver, for the joy they've given me, for the perspective they've given me, for the babies they were and the young men they are. And they're pretty damn perfect.
  3. GALLOWS HUMOR Even though I've made a groove in the shower with my forehead where it fits perfectly and from which is etched a narrow channel where tears have mixed with water that pool around my feet, salting them, I generally hit a point where everything -- and I mean everything is absurd. My two sons seem to have inherited this quality (is it a quality or just a characteristic?) as well which I think means the universe is abundant. One of my fondest memories is of Little Oliver, aged six or so, lying on the floor trying to pull a cup out from under a piece of furniture in the kitchen where it was thrown by a seizing Sophie. Who lives like this? he muttered. What kind of life is this? There are those who believe everything is a blessing and has a meaning, ordained by God. There are those who despair and give up. And then there's the rest of us, and we roll around and laugh.
  4. MONEY Yes, you've read that right. I'm perfectly aware that money doesn't make for happy or give us a cure (lord knows I've raised so much money for epilepsy research and we all know things seem as dark as ever). What money does, though, is make things easier. You get better healthcare when you have money. My parents have supplemented me with money for as long as Sophie has been alive. I use the money to pay for caregivers or for any expenses related to Sophie's care. I also get money from a program called In Home Supportive Services. Basically, I am paid by the state of California to keep Sophie at home and out of an institution. I'm paid under $9.00 an hour which isn't exactly what I'd probably have made if I'd had the career that I originally planned on having, but the money goes toward the near $20.00 an hour I pay Sophie's helper. Money doesn't just make things easier. It has saved my sanity and my family's life.
  5. FELLOW CAREGIVERS I would honestly have died inside if I didn't have my amazing community of fellow caregivers to share the road with me. I'm hard put to write anything but cliche about these men and women who offer support, camaraderie, mutual senses of humor, similar horrendous and wondrous caregiving experiences and always love. The beautiful world of the internets has made this possible, and I'm also hard put to imagine how in the hell I did it back in the dark days of the last century when there was no such thing, when I tossed out my copy of What to Expect The First Year. Oh, yeah. I remember how I did it. I met Jody and Susan and Lauren and Gigi and talked to Eleanor on the phone (literally the only person I knew who had a child with a disability). 
  6. MY REGULAR LIFE FEMALE FRIENDS I know everyone has their burdens, but there ain't nothing like having a child who is severely disabled. That being said, my friends who have not been uniquely blessed and cursed have taken me out of that very small world and supported me. We drink and laugh and go out to lunch and to see movies and complain about our teenagers. I have some online relationships with fellow writers and bloggers who sustain me as well. It's a beautiful world.
  7. MY PROGRESSIVE POLITICS I have a relative who once bragged to me that despite his unemployment and economic duress, he never accepted or expected help from the government. We all need one another, and I'm telling you that no family member or even neighbor is going to help me out in the way that I need help. I'm talking about changing dirty diapers for decades, lifting my daughter into and out of a wheelchair and a car, buying her drugs to keep her alive that cost thousands of dollars a month and providing her with a quality of life that is stimulating and has a modicum of beauty. I need help. Show me a conservative politician with truly progressive values who claims to honor the sanctity of life and supports policies that help the profoundly vulnerable in our country. 
  8. MINDFULNESS MEDITATION I took the basic six-week mindfulness meditation for stress reduction class when Henry was about two months old and Sophie went on a two year screaming jag. It saved my sanity. I might go days and even weeks without sitting (the practice of meditating), but I have honestly tried to live mindfully ever since. That means recognizing each moment that comes, the bodily sensations it evokes and not judging them. 
  9. LITERATURE, POETRY, ART AND BIRD PHOTOGRAPHY I'd be dead in my mind if I didn't surround myself with books and poetry and art and those who love them. My writer friends are probably my closest friends because we know that our salvation is our suffering and what we create from it. Oh, and then there's the bird photographer.
  10. SEX Just kidding. Maybe.


  1. Pile of Ashes. Driving a car. Wearing sunglasses and lip tint. I couldn't love you more!

    To your list I would add Relativism. E.g. Sunday emergencies seem to bore deeper into the bedrock then Thursday's.

    Sincerely yours, A Shredded Plastic Bag scooting down the street

    1. Dear Shredded Paper Bag,
      You float so beautifully.

  2. This is lovely. I think I need to try number 8.

    Katie is having a tough time. Her regular care giver whom she loves, has gone back to school so she now has new people. She doesn't like new people. And none of them has the patience and gentleness that Joseph has. She's banging up her face pretty good in protest.

    That's a lovely photo of Sophie:)

    1. Lily Cedar, I hate hearing that your girl is struggling. May she be well.

  3. From the first time I read your blog, I knew that Sophie was perfect and precious--just like Henry and Oliver. Sophie is one of the main reasons I cast my votes the way I do. The "Phoenix" looks beautiful and serene. The "Pile of Ashes" looks pretty good too!


  4. Sounds like you have a very, very good toolbox here. A toolbox fitted out after years of trial and error and experience and wisdom and education.

    1. Mary, I like thinking of it as a toolbox. That means I have a machete in there, too, that helps me whack out the weeds.

  5. Sophie looks great and so do you. Must be love! And your reasons seem anything but random.

  6. It's wonderful to see you and Sophie out and about again! Hurrah! On number 8, you att right on. Even is
    F I don't do it regularly anymore, it taught me so much about the silly working nag of my brain and how,to step out of the spiraling monkey mind. This entire list resonates, and I cannot imagine a life without these resources l

  7. Sophie the Phoenix, we could ask for no better news. Gallows Humor, whatever it's made from, it always keeps us afloat. Art, beauty, love, gratitude and being in the moment, I think you've covered it all and then some. I recall (I think) a John Leguizamo
    stand-up routine in which he had a line, "How do I DO it? I don't know, I just do it." xo

  8. I love you. ❤️ And I love seeing Sophie sitting up like a Phoenix, in the car with you.

  9. A great list... I connected to every aspect of it. Loved the Sophie the Phoenix and her Driver the Pile Of Ashes bit too with that great Selfie! If it were not for the Gallows Humor part that is hereditary in this Family too I am fairly certain Mi Vida Loca would have destroyed my Soul! Sometimes we laugh so hard about things that other people are dismayed we find ANY Humor in that it just makes it MORE Hysterical to us! Usually in hindsight, in the Moment sometimes I'm crying more than laughing... but the laughter ALWAYS comes later Thank God! Yes, the Universe is Abundant, for that I am forever Grateful! Blessings from the Arizona Desert... Dawn... The Bohemian



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