Friday, April 1, 2016


Sometimes I feel that when I am unable to do the typical, every day, mundane parenting tasks because my brain is not functioning at 100% because Sonzee has CDKL5 it comes across as an excuse.  I am sure there have been plenty of times where I have interacted and the person does not fully understand how CDKL5 really plays a role in the situation.  I get it because I did not always have a child with special needs.  I have such a newfound admiration and empathy towards special needs parents, because honestly, until you are one, even if you are the most empathetic person in the world, there is just no way you can get it.  It is why people bond over shared experiences.  Why only those who suffer from cancer "get it", why those who have autism "get it", why those who have lost a child "get it".  It takes one to know one.

Yesterday morning I left the house early with my two youngest girls.  I was proud of myself for getting up early, making sure all of our items that we needed for the day were organized and packed.  I had placed my oldest daughter's dance bag in the car so we would not have to rush home before going to get her from school.  I packed Sonzee's medications for the day, made sure I had syringes, cups for mixing, a pill slicer and crusher.  I poured 13 ounces of her formula out of the premixed container and split it into an 8oz bottle and a 5oz bottle, just in case she was ravenous.  Everything was all set to go and at last minute I decided to warm up the 8oz bottle in the milk warmer...and then I left.  It took me until I was sitting 30 minutes away from our house watching Sonzee's sister swim to realize that the milk was still in the warmer.  I was so frustrated, but still decided we would not return home, and I hoped we could stretch the 5oz bottle until I needed to get her sister from school.

On the way to our friend's house, I decided to stop for coffee.  The line for Starbucks was literally wrapped around the building.  I am sure it took me longer to wait then it did to drive to that side of town in the first place.  The girls were quiet in the back seat, we had music on, and I was slowly inching my way up to the window.  It dawned on me as the window came into view that I never ordered the coffee.  (Insert emoji face with hand on chin and tilted head).  Who goes through the Starbucks drive thru and doesn't think to order her coffee?  As I pulled up to the window with my rehearsed speech, I told the Barista that I had no idea how I had not placed my order.  In her upbeat, happy go luck Starbucks persona, she assured me that it was fine and that "it happens".  (Ya, I am sure it does.)  

I wanted to tell her that my brain is not quite in the on position, that I am living in a fog.  I wanted to tell her that the baby in the back seat has a rare genetic disorder and since her diagnosis, I have not been able to function to my fullest potential.  I wanted to let her know that I have not slept more than four straight hours since February 11, 2015.  I wanted to tell her we just got out of the hospital a week ago.  I wanted her to know that I also left a bottle of formula sitting in the bottle warmer.  I wanted to justify my space cadet ways, as if that was exactly what she wanted to hear at 10am.  Instead I simply placed my order, drove away, and I am pretty sure we both laughed about how the lady in the grey minivan drove to a Starbucks drive thru and never placed her order.

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