Monday, December 18, 2017

I Did not know...

I had a lot of assumptions of how things would be with a new baby after having a child born with a rare and complex genetic disorder resulting in intractable epilepsy.  I imagined the Moro reflex would make me question infantile spasms and that any type of twitch, jerk, or shake would cause my heart to skip a beat.  I assumed that leaving the hospital without a NICU stay would be emotional, and that the fact my kids were able to wear their "big/little" sibling shirts would cause me some tears because we never got around to doing that when we had Sonzee.  I figured that at some point it would be bitter sweet as I watched Sonzee remain frozen in time and our new baby advance and meet milestones.  What I did not anticipate or did not know (how) to prepare myself for was the constant flashbacks and memory reels playing in my mind of Sonzee as our new baby does something similar to a seizure, but is just being a "typical baby". 

I can vividly see every seizure she had while in the NICU that had me on edge, but that happened too quickly for any medical professional to share in my concern.  I can clearly remember saying to my mom during that first week in the NICU that my fear was Sonzee was constantly seizing because of her wonky eye movements.  I remember when my dad told me "the thing about seizures is that you just have to wait and see".  I don't even have to close my eyes to see the video of Sonzee's seizure that won us her ticket to the PEMU at PCH at just 4 weeks old.  I can "play it back" in my mind on repeat and tell you every detail.  I know it is completely acceptable that I am on "red alert" with Sonzee's baby brother, but I didn't expect for every little similar movement to bring back the live playback of Sonzee front and center. 

Despite relying on the statistics that "it would be extremely rare" for another child of ours to have CDKL5 or even another de novo mutation, there was and is a constant fear lurking in the back of my mind about "what if"; after all, Sonzee is an extremely rare statistic.  There is nothing anyone can say that will calm the fears of the potential of rare occurring in any facet within our family.  Despite a friend of mine who has a 2 year old daughter with CDKL5 and an infant son warning me that things would be different this time, I shrugged the warnings off, because I am a seasoned neurotic mother and all but one (now two) of my children have been to a neurologist at some point in their lives for various reasons. 

I did not know that a simple sound, eye flutter, or body movement would cause my body to freeze and bring on a complete panic attack.  I did not know there were so many "weird" things that newborn babies can do, and I have no idea how I did not notice these with my first three, or did I?  I did not know there were so many ways to analyze "typical baby behaviors".  I did not know how scarred I am or how tainted my views have become due to life with rare and specifically CDKL5.  I didn't know so much fear circulates within my body that I bury on a daily basis.  What I did not assume or know was just how mentally challenging a baby after Sonzee was going to be.

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