Wednesday, June 15, 2016


I have always been aware that this journey would follow a similar pattern to that of a grieving cycle.  I understand that the stages of grief can become blurry and that at one-second there can be feelings of acceptance and then snap, the feelings can quickly change to feelings of sadness.  Throughout the last 15 months, I have allowed myself to feel depressed; I have attempted to control the situation by thinking if I was better or changed my ways than maybe a different outcome would occur.  I have “come to terms” with all of the various courses of treatment we have had to try, as well as allowed myself to face the realities of the potential possibilities.  I have allowed myself to enter into the fantasyland of denial, because let us be honest, it is much more fun to dance among the stars.  What I have tried my hardest to do during these past 15 months is to place my anger on the backburner. 

I have had many a conversation with myself (you know you all do that too) rationalizing that getting angry does not serve a purpose, that it won’t change things and it is just a waste of my time and energy.  If I allow myself to be angry, that would indicate there is a person or thing to be held accountable.  (Sometimes I think it would be so much easier if that were the case).  I can justify why being angry is useless, why it will just make me bitter and well, obviously even angrier.  I can list hundreds of reasons why I should not feel angry, but what is becoming increasingly difficult is actually buying into my own logic.

The worst thing about giving into being angry is that I am even angrier with myself for doing so.  At least when I am in denial I can enjoy the moment while I daydream.  When I am bargaining with G-d for a change, I feel proactive, as if I am doing something that WILL help the situation; that will help Sonze.  When I get depressed, I can cry and tell myself that it is all part of the process and that it is necessary because this situation is sad.  However, getting angry, it does absolutely NOTHING.

There is NO tangible reason why my child has a mutation on her CDKL5 gene.  I am not even privy to a spiritual or philosophical reason for that matter either, and probably never will be during this lifetime.  There ARE not people, nor even ONE single person that can be blamed for the frameshift mutation on exon 9 of Sonzee’s CDKL5 gene.  There is NO one I can point a finger at, NO ONE to direct my anger to, No one that is, except G-d.

The spiritual part of me accepts that Sonzee’s CDKL5 mutation has more to do with her soul and its specific purpose here on earth.  The spiritual part of me truly believes that my job is simply to assist Sonzee as she fulfills whatever it is that her soul’s mission needs to complete before leaving this earth.  The spiritual part of me knows that neither she nor any of my children are actually mine, and they are all simply here in my care for me to help them do what they each need to do during their lives.  Then again, I am human.  There is that pesky human side of things, constantly getting in the way.  The human part of me is what is so angry.  Angry that I am forced to watch my child have seizures, pain, and constant daily struggles. I am angry that I do not even have anyone or anything to blame for my current predicament.  I am angry that this situation challenges me in every way imaginable.  I am angry that this situation has left me doubting my beliefs, my feelings, and myself in general.  Since my human side seems to be winning in this spiritual/human battle, it would be nice if my anger would be a benefit to Sonze, because if that would be the case, I can assure you her CDKL5 frameshift would be undone and she would no longer have a mutation on her CDKL5 gene.

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