Hope. Another small string of characters that play with my
emotions on a daily basis. I rely so heavily on this word and its
definition, yet at the same time, I would prefer not to give its meaning any
time or day. There is a reason I have a love and hate relationship with
this word. It is one of those words that can make you feel elated and
excited. It can give you something to hold onto when there seems to be
nothing to grasp. Then on the flip side, it allows your mind to wander
into a dangerous territory, into the unknown, and to give homage to Gene
Wilder, "in [to] a world of pure imagination."
Hope is something
I prefer to keep in my back pocket because I am more grounded without it.
There are those rare situations where my guard is mysteriously let down
and I let hope sneak
up on me. I really dislike when that happens because when the situation
unfolds in a manner that wasn't part of my dream of hope, well, it is safe to
say it takes some time for things to get back to normal (and yes, definitely ice cream).
I predicted the
results of Sonzee's EEG. She has done enough of them (18 to be exact) for
me to qualify myself as an accurate EEG result predictor. I am by no
means saying I could translate the actual EEG itself, but I can give a fairly
accurate description of how the reading will be interpreted.
On Monday I shared
my predictions, "I am pretty positive
the reading will be "typical Sonzee", with her usual spike waves here
and there, but nothing too shocking for a child with a CDKL5 mutation.
What I did not really say in my post were the words on the soundtrack that was
playing in my head.
I did not share
that there was a part of me that hoped and
almost believed the reading would be "typical". I had dreamt in
my mind that her epileptologist would write to me and say, "Randi, this is
her best EEG ever. There is no seizure activity and her background is normal".
Along with the monologue in my mind, I envisioned Sonzee sitting, alone,
unsupported. I pictured Sonzee's picture watermarked with not only
"sonyasstory", but also as an advertisement of how a medical cannabis
product had completely changed her EEG. Do not get me wrong, the RSHO is
helping her cognitive capabilities (we think?), but nothing has performed the
miracles I had hoped.
So now, I am
sitting here thinking about hope.
Aggravated with the word even more because it is a necessary evil in
order for me to travel along this journey, I would not be able to survive
without it. Yet I am so drained from repeatedly having my hopes blow up
in front of my face like a latex balloon (if you are unaware of my fear and
hatred of latex balloons, consider this the moment where I let you in on my
secret). While I am so incredibly thankful, that Sonzee's hypsarrhythmia
is NOT back. I am definitely saddened and disheartened that her EEG was
not what I dreamed it to be...I guess that is just par for this course.
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