Thursday, May 28, 2020


Three days are remaining in May.  I really dislike this month in general because it has always been the month of her 28-day hospital stay.  The number of consecutive days never did get trumped, but there were a few close seconds.  The month of May did have its perks, like the fact that for some reason the last week of the month would start her on some sort of seizure vacation until around the beginning of July.  Sometimes she would go close to the entire month span without a large seizure and only have her millisecond drops or spasms, sometimes it would be days.  Whatever it was, we never had a reason, it is just what happened year after year from 2015-2019, every single end of May.  I hope wherever she is that she has been enjoying seizure freedom for the last 16 weeks 2 days and 21 hours, if not I will have a lot to take up with the upper management.

On Monday it becomes June, another new month to start without her here.  It also happens to fall on what will be another new week without her here.  In 6 days it will be a complete 4 months without her here.  I cannot comprehend how summer is already here.  I really feel like I closed my eyes and it all happened in a blink, but yet it feels like the longest close to 4 months ever that I wish I could have actually slept through. 

Every day since February 3 has brought something new.  Supposedly the first year is the worst because of all the "firsts" you get to experience in a new way, but forget any of the special days, every day for the rest of my life is going to be something new I have to figure out without her here.  I dislike all that comes with that little fact.  Even in the crazy world of CDKL5 and Sonzee, we had a norm, we had a routine, and we had inconsistent consistency.  There was comfort and familiarity in the inconsistent consistency and we even relied on it, or at least I did.  I still feel so lost without her and the chaos as my guide, and I really really dislike all of this change.

The Mighty Contributor

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