Thursday, April 5, 2018


Sonzee's baby brother turned 4 months old last week, and I wish I could say I am enjoying every minute of the experience, but that would not be the complete truth.  After you have a child following your child who falls under the category of "rare" it becomes challenging to accept the "typical atypical" baby behaviors for what they are, and not for what they might be.  So here I find myself sitting at my computer watching videos of my first daughter when she was 4-5 months old after spending the entire day sending videos of my son to his pediatrician, two good friends, and panicking to Sam that things are not right.  

It was on my 7th video of watching my oldest doing everything similar to her youngest brother, yet vocalizing significantly less, that I wanted to cry.  I sent two different but similar texts, one said "I want to go back to being that mom", the other continued to say "...the mom you sadly never got to be and the one I miss being.  The one where her baby does everything [Sonzee's brother] does and even more questionable movements but the mom who had zero [expletive] clue about rare".  Then the tears could not help themselves, because this is just too much to keep inside.  This is not how it should be.  

No one should know raising a child with CDKL5.  I have always been grateful Sonzee was baby #4, I got to experience my naive mommy-ing moments.  The negative is that I am aware of how my mommy-ing was different, I know the type of mommy-ing I am missing.  Despite my son's congenital heart defect, there was nothing that prepared me for the situations CDKL5 has brought to the table.  I wish I could go back to being the type of neurotic mom I was with my first, because CDKL5 has brought me to an entirely different level.  

Every day I wake up and tell myself that my son "is not seizing", "he makes eye contact", "he has an adorable laugh", "he smiles at everyone and everything", and "he is fine".  But then there is a picture posted to Facebook of another child his age doing something he is not that I did not even consider he should be, or there is a momentary flashback of Sonzee at his age doing the same "weird" movement, and the panic washes over me in an unstoppable manner.  There is no rationalizing with me, or convincing me otherwise, because I am sitting here waiting for the shoe to drop.  I am so confused between my actual gut feeling, nerves, and the potential to journey down a similar path of Sonzee's with another child that it makes me nauseous.  There is something to be said about the carefree first-time mom of a typical child, the one I will not ever be again, and sadly, the one I never realized until now, I once was.

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