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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