Friday, December 25, 2015


Once a week or so my computer has a pop up that tells me it's time to restart my computer.  I usually press ignore the first 20 times it shows up.  The hours and days following the initial message, a pop up reminder randomly appears on my screen with the option to "remind me later" or to restart the computer.  I continuously hit the reminder button, until eventually my computer does not give me a choice and it automatically restarts itself.

These days I've been feeling all sorts of emotions.  Fear, anxiety, sadness, and sporadic bursts of happiness thrown into the mix.  Thoughts run wild in my mind and I am constantly reminded that I need to take time for myself, that my system needs to be refreshed.  I am constantly ignoring the pop up telling me I need to slow down, to take a break, to try and distress.

As we started Sonzee's first wean from a medication I have been thinking about reboots.  Every time she has a seizure I second guess our decision to wean, even though I know seizures are an ironic side effect of the wean.  The seizures may not even be related to the drugs efficacy, just a side effect.  We increased her cbd oil a couple of weeks ago prior to her wean and an increase of seizures can be related to that as well.  She isn't experiencing any more seizures than she normally does, I just wish they would stop.  It's so disheartening when I read about other kiddos with CDKL5 who have seizure control, why not Sonze? 

Eventually whether I like to or not, I am forced to take a much needed break.  We are currently on a little family vacation, complete with Disney princesses and a cabin in the snow.  What better way to get a reprieve and take some much needed time to just enjoy time as a family and be driven crazy by normal family of 6 experiences.  It is so nice to have a chance to get a break.

 At the same time, it's hard to fully enjoy my much needed start over when I think about Sonzee.  She has had at least one seizure a day during this vacation.  Her little body needs a break, a refresh to her system, a simple reboot.  I wish she would be afforded the same automatic shutdown and system reset, complete with a vacation from these awful seizures.

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