Navigating the Inevitable

Constantly aware, unusually prepared at a moments notice, we as parents of chronically ill children work to navigate the inevitable with whatever disease ails them.  This becomes even more important when our children cannot, will not or are not able to advocate for themselves.

Talking to Emily last night, working on coaxing her to go to sleep despite her hesitations to, I reminded her that every time she wakes back up.  Every time- sometimes it takes longer, but she always does.  She retorted, yes, but you never know with me, Mom.

Truer words were never spoken.  How do I argue with that.  Emily knows all too well what can and has happened to her throughout her SIOD medical journey.  I take great hope that every single day, week, month and year Emily is teaching, leading and showing the world how to navigate this rare genetic life limiting disease.

Emily has been having more break though seizures and the anxiety is creeping back in, but we have increased her seizure dosage with her neuro doc and should be seeing her conquer this again, too!