Sunday, December 23, 2018


Last Monday I took Sonzee's oldest sister to a doctors appointment at one of PCH's specialty clinics.  They are scattered all throughout Phoenix and I tend to take whatever is first available, so I drive all over the valley.  It was when I typed in the directions into maps and the blue pin popped onto the screen that I knew exactly where this one was located.  It's the one specialty clinic I have managed to avoid since April 16, 2015.

I cancelled the directions, because I knew exactly how to get there.  Every time I am on the 101 going west I do a quick glance out the window as I drive past, almost as if it is a nod of respect.  Yet in 3.5 years I have never walked back through the doors.  The entire drive there I was hoping my emotions would be in check.  After we parked and walked in I was surprised how unrecognizable it was to me.  There were no flashbacks in my mind of waiting in the lobby, no visions of where we sat or which door we walked through.  I couldn't remember if the room we were sitting in was the same room where the printed and highlighted research report along with 2 sheets of paper were handed to us.

I would have thought all of the details of the day would have stuck with me, but all my memories have a blurred background.  I remember the conversation we had with her doctor verbatim and I remember getting into the car and doing the exact thing she had warned against.  I remember every detail of the drive home and the first person I said things to do at my daughter's dance class that evening when she asked how the appointment went.  I remember the next morning when I could hardly get out of bed, and my mom telling me "time is of the essence", that I needed to get up, make phone calls, and do everything I could.

Little did we know that no matter how much effort was poured into our research of CDKL5, or how many therapies we would enroll her into, or how much money we spent on every alternative option provided, or how many second opinions we would get for treating her various symptoms, the outcome wouldn't be any different.  While the genetic mutation written on those pieces of paper certainly does not define her, it does set forth incredible limitations that even the most well intentioned, sadly, cannot overcome.

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