Friday, January 11, 2013


My sweetie got me Anne Lamott’s new book for Christmas.  He knows me well; that happens after you’ve been living with the same person for 18 years. Lamott maintains that there are really three simple and essential meditations needed in our lives:  Help-Thanks-Wow. I’m not one to make or keep New Year’s resolutions, but I like this proposal of Lamott’s to ask for assistance, show gratitude and never be dulled to wonder.  These may not be prayers to a higher being, but as a hopeful parent (HA!), I’m going to try this exercise publicly:


My daughter has a rare disease, and she is most likely going to die sooner than the rest of us.  This is my daily reality, and I’m pretty sure it scares the hell out of most people.  Sometimes I don’t feel as if I have many friends, and my family is far flung. The search for new Personal Care Assistants is a constant project.  I feel isolated--deeply isolated, and I can turn into a mean and angry depressive. I want someone to throw me a raucous pity party!  We’re making a trek to Pittsburgh’s Program forthe Study of Neurodevelopment in Rare Diseases this next week to see the one key specialist in the country for Sylvie’s disease.  Perhaps there will be no new information garnered from this visit, but it’s one attempt to reach out for assistance in dealing with my daughter’s medically fragile condition. HELP! 


Sylvie’s snot has subsided!  Rejoice!  For now, the suction machine is put away and she’s back to school to hang out with her peers.  Last month I wrote about the mystery Santa we had last year.  Well, more anonymous gifts appeared this year on our porch the day after Christmas—boxes of wrapped gifts for the entire family, including more coffee for my man. Apparently these gifts had fallen off Santa’s sled.  We received two unexpected monetary gifts in the mail from good friends and one of my far away cousins.  One of my mentors and new friends gave us a lovely gift certificate to a nice restaurant in town in hopes that my sweetie and I can go out on a date soon.  I live in a town and a state that not only adores but lives for large piles of snow, and the huge snowstorm we got earlier this month caused great exultation! THANKS!    


My little girl was giggling so hard and loud last night at the dinner table that she made the rest of the family smile too.  She thought it was hilarious when we put a mirror to her face to show her how silly she looked in her papa’s winter elf hat. What music to hear that child laugh with clear lungs and bright eyes.  My beautiful twin girls turn seven in a couple of weeks and we’re planning a giant birthday party based on C.S. Lewis’ The Lion, the Witch and the Wardrobe classic. Narnia is a fantasy world of magic, dwarves, talking animals, an ice witch and Turkish delight, where children have great adventures.  In the last 3 weeks, our family has read six of the seven books of the Narnian Chronicles.  Hurray for great children’s literature and wild imaginations. WOW!

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When Kirsten isn’t preparing for her twin daughters’ Narnia themed 7-year old birthday, she is a professor of Communication Studies at the State University of New York.


  1. I try to keep Anne Lamott and Pema Chodron on continuos feedback loop on the cd player in my car. They keep me going when things get bleak. Glad that your man is so thoughtful!

    1. I'll have to take up Pema Chodron for my additional inspiration.

  2. I love this post. It is something I try to remind myself again and again. I will have to pick up a copy of this book. I know what you mean about the isolation and pity partying need! How was your trip to PA to see the specialist?