Sunday, February 21, 2016

Dead of Winter, Day, Sun

That's the view out my back door on this late February afternoon, but it was certainly the bleak mid-winter about twelve hours ago when I was going on my sixth or so hour with Sophie awake, four o'clock in the morning, the darkest hours before dawn, the dark night of the soul. I didn't want to write about what had come before because -- well -- you know me and my southern Italian superstitions.

Sophie went nearly two weeks with only 1-2 seizures, and those were so mild I'm not sure I even remember them. 

One night, I thought I heard her seizing and jumped out of bed to run to her room and see her soundly sleeping. That was weird. But until yesterday, nada, nul, nothing. I was secretly exultant and outwardly cautious. She's taking a new strain of cannabis called ACDC and a tincture of THC at night. She's taking a larger dose as well. Her other medications are stable, as we don't change more than one thing at a time.


The moon is waxing full and my nighttime psycho caregiver self was waiting on the sidelines.

Oliver has a terrible virus and is laid low, so when Sophie started the old seizure drill yesterday, I sighed and figured she's getting it, too. Yesterday, she had some weird grand mals that were short but very vocal. She was in her room at one point, sitting on the floor, and I had just settled down to do some writing when I heard it -- a long, high-pitched groan. Henry and I reached her room simultaneously where we found her face down in a pile of toys, her right arm bent backward and banging against the padded closet door. It's like a horror show, folks, except that it's not. It's our life.

Henry quickly scooped her up and brought her to the bed where he gently lay her down and then disappeared into his room to probably continue stealing cars, while I sat with Sophie and just brushed the hair off her face and told her it was okay. We've done this a million million times, and there's just no getting used to it. Every single damn time.

The nighttime psycho caregiver self that was waiting on the sidelines, ran in to full play around 1:00 in the morning when it looked like Sophie was probably not going to sleep at all. I don't really know how to describe myself during those hours other than to emphasize that my disarray and delirium and despair are all mostly internal. I am prone to dark, dark imaginings of the end of times sort where I might think about the decades I've done this in incredible detail. I generally run through all the things I've done wrong and then my regrets and what ifs. I might entertain the thought that our lives are ruined. I allow thoughts of Baby Sophie to reemerge -- the hospital visits, the screaming, the Ketogenic Diet Days, the tromping through Manhattan for therapy days, the first PET scan and her suffering through countless blood draws and sticks. I am, of course, obsessed with everything that I've done wrong and how it will be like this forever and ever and ever. I think it's a sort of Continuous Stress Syndrome Disorder that strikes in the hours between 2:00 am and dawn.

Pray that I die, pray that I die, my Italian nonni used to mutter as she roamed our house on visits, her rosary beads clutched in her gnarled fingers that smelled of soap. I am her.

Would that I had an underground bar to visit, connected by tunnels, where those of us with these children might gather together, drink whiskey, tell dark jokes and look at paintings until the light comes.

The light comes. The darkness pulls in, is quite suddenly quenched. I feel chagrin but open my arms to morning, every single damn time. And the sky today, dear god, is so blue. And the sun. The sun!


  1. Replies
    1. Dear king. Of course you would. We'd be barflies together.

  2. My daughter is sleeping at night at the moment, instead of watching her computer all-night-long and sleeping away the day. I think. Oh... no. I hear it, actually, now that I listen.

    I am lucky that I get to sleep, now, I am very grateful. I'd still come to the bar, though, and discuss all the things I've done wrong, and the guilt, and the panic about the future, and what may come and what if.

    I wish I had a magic wand.

  3. Dearest Elizabeth-Night work, night work. I cannot compare my life to yours but I do know that angels or devas watch over night workers. When the city is asleep, there we are, doing the soothing in spite of our own need for sleep. My work has many happy endings but not always. And I can be drawn into the dark; failings, shortcomings, irritations, fault lines in my psyche that make me wonder if I'm up to the task ahead. Sometimes birth is just a shit show and I think we midwives working alone in the night are just nuts. Still. I do get to put it down and go home.

    So bless you, dear heart. For coming here to tell your story and the story of your family life. Know that we, your readers, welcome the new day right along with you. And your Sophie is our child too.


    1. I think the bartenders of the night shift are the midwives.

  4. "I am, of course, obsessed with everything that I've done wrong and how it will be like this forever and ever and ever."

    Me too! But without the staying up all night. I love that picture of the Madonna of the Night Shift. My stepdaughter would qualify as well as her little one doesn't like to sleep.

    It's not just Katie I worry about, it's my other two that I worry about as well. How much did I mess them up? Not just with caring for Katie but with my own concurrent depression. And yet there is nothing else we can do but put one foot in front of the other. Sending hugs and thank god for blue skies:)

  5. The sun. Again and again. The sun. You, dear Elizabeth, are Sophie's sun. And you are ours.

  6. It makes me so sad to think of beautiful Sophie continuing to have friggin' seizures and of you having to be on constant guard. My heart is touched when I hear that Henry gently lifts Sophie and puts her in bed. It is such a difficult and moving life. What Angella says makes me cry and is so true. I love you.

  7. I'm digging the tunnel to that bar as I write this. Meanwhile sending love. Hope you are sleeping right now.

  8. I was awake last night - and thank goodness for sunrise and for the freshness of a new day and a new beginning. I hope Sophie is better.

  9. I'm crying with you.

    Jen in San Jose

  10. What is it about the night that brings out the crazies in us? I am reminded of the scene in The Addams Family where Grandma tells Pugsley about Acrimonium. "Takes the lid off the id. Brings out the dark side. One swig of this and Mary Poppins turns into Medea." Who needs Acrimonium? All I need is to be awake in the wee dark hours of the morning when I don't want to be. Sounds like you're filling up that bar, my dear. I'd head over, for sure. Now, who to hire as the bouncer so the riff raff stay out....


  11. Dear Sophie mother, you made me cry. I wish I could offer you whatever it takes.

  12. I always wish for someone to talk to on nights like that - they are endless and scary.

  13. My mom would join you all. We are good diggers. Some days it's all too much. One thing i know, and i'm sure Sophie does too, is what with the drug smuggling and various sword-wielding, life with epilepsy clearly reveals a mother's love. I think seizures are hardest on moms. I don't ever remember yelling. it's maybe a blessing and a curse that that's what we do just before it.



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