worst fears, screaming & weaning

Thursday, March 12, 2015

This has been one of those really rough weeks I dread because it seems like they are becoming more frequent.  Paloma had her first big seizure in public on Tuesday. It's been one of my worst fears and kept me from going so many places.  It was a perfect spring day so we went to the dinosaur museum.  Paloma was having so much fun running and sliding. There was even a point that she was playing with a little girl her own age and I remember looking up into the sky and thinking, God this is so perfect its almost like shes normal. 
 Well then she was running in the grass and happened to look up at the sky and started blinking.  I hoped it would just stay in the face but it spread to the whole body in an instant.  I called 911 as a precaution because I only had 10 mg of Valium on me and lately its been taking 15mg to stop her seizures.  10mg alone is a lot and kids much bigger than her on that dose.  Thankfully, it stopped before they even got there.  As they were checking her out, several of the paramedics said, I think I've been to your house before.I just nodded. 

As they were helping me walk out, one of the paramedics was reminiscing, telling me about he used to bring his daughters here to play and how nice it was and oh what a nice day.  I was silent but what I wanted to say was, my kid can't even fucking play or enjoy this perfect day. My kid can't run in the grass or look up at the sky.  I cried in the car on the way home.  For Paloma, who was screaming from all the Valium, for my other two kids who never get to go anywhere or feel normal.  

Now as we are down to our last few drops of phenobarbital which I've been slowly decreasing a drop at a time since June, Paloma is inconsolable.  She screams all day long, wanting to be held then wanting no part of me.  She bangs her head on the ground over and over.  She screams go.  I think back to the neurologist that told me, "phenobarbital doesn't have withdrawal symptoms it should be a fairly easy wean."  And I sit here thinking when will it ever get better, will it?  How can I do this for the long run?  How can I?  


  1. She is so beautiful. And you can do it. Many of us have and do and continue to -- you're not alone, particuarly during the hideous times. I'm sending you love, even though I don't know you.

  2. oh Lindsay, this is so hard, you are not alone... I love you guys! JRR

  3. Thank you Elizabeth! Just knowing others have managed to get through this gives me strength to continue.