Sleep no more

As many of you know, this is the title of a popular, yet confusing and somewhat annoying show here in New York City.  It’s also the title for my life right now, which is somewhat confusing and annoying.

I know this sleeplessness is just a phase.  But it’s going on way too long.  And it’s different from her previous episodes.  Lily’s inability to fall asleep lately is tinged heavily with bouts of hysterical laughter.  Yes, it’s cute.  And a lot of the time I do laugh alongside her because her giggles are infectious.  For those of you who are fortunate enough to have heard her belly laugh, you know what I’m taking about.  But at midnight?  When it’s been going on (and off) for a few hours?  It’s not so funny.  It’s downright alarming.  And annoying.  There, I said it.

So I’ve been researching the laughter.  And it turns out, it’s one of the many facets of Rett syndrome.  Something neurological is going on in this kid’s mind.  And it is likely linked to the increased ‘Rett episodes’ she’s been having.  Yup.  In August, and into September there have been more than a few times that she’s woken up, shortly after falling asleep, with scary shaking and convulsing spells: she’s fully aware of what’s going on and is looking at me with terror in her eyes begging me to make it stop.  That, my friends, is Lily’s version of a Rett episode.  It’s not a full on seizure as she’s present during the convulsing. But something terrifying is going on in her brain.  And it’s terrifying the both of us.

These episodes have also impacted her physical function.  She’s become much more clumsy these past few weeks.

We are going back to the hospital in early October to see the Rett specialist. Likely the doctor’s recommendation will be to give Lily the trazadone she prescribed last year when her last awful sleepless period happened.

For now, I’m keeping an epileptic activity journal, noting all the times Lily has these ‘Rett episodes’.  And, in the meantime, I will do my best to keep laughing alongside my sweetie.

Lily's favorite sleeping position, 'the starfish'

Lily’s favorite sleeping position, ‘the starfish’.

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2 thoughts on “Sleep no more

  1. This sucks. Keep laughing with her. You are truly a,special person Chrissy. And lily is the luckiest little princess in the world to have you as her mom. I love you

  2. My heart goes out to both of you!! And the starfish sleeping pose is so very cute. I’ve always thought kids who sleep like that must feel really safe and taken care of – it’s just such an open shape! Oh, but you must be so dang tired. And Lily too – I don’t have much more to say except that I’m rooting for you both!

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