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.