I have been staring at an empty blog page for close to 2 hours. I have so many things going through my mind and emotions traveling through my body. My inner dialogue is about as organized as my diaper bag, and to lend some insight, I just took out an extra outfit for Sonzee's baby brother that was a size "Newborn"...he will be 5 months in less than a week. For some reason, the impact of CDKL5 is all of a sudden just hitting me hard, and I cannot escape it.
While the more rationale part of my brain tells me “You cannot live like this.”, the other parts are not strong enough to win that argument. The trauma caused by this diagnosis has planted its roots deep into my psyche, making things feel impossible. I try not to live in the fear of the potential of losing Sonzee on a daily basis, telling myself that “the length of life is not certain for any of my children”. I am trying to convince myself that Sonzee’s baby brother is going to be a typically developing child, and that when my children have “minor aches and pains”, they are just minor, that they “will not be the worst case”.
I cannot decide if I am spending more of my time panicked about the potential “worst cases” or trying to thwart those thoughts? Each day I wake up and for a split second I feel calm and at inner peace. Then the panic fills my chest as if I just breathed it in, and then it finds a nice cozy spot inside and just sits. I cannot breathe it out, I cannot make it go away. Every moment from that point on is spent trying to tell myself that what I feel is not healthy and that I need to not focus on these things. I can only try to take deep breaths, ignore the heaviness, and pray for it to go away.
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