No need for details... we got nowhere... Still in the same boat. If anything, I think it convinced us that the Vagus Nerve Stimulator is our last true option.
Thanksgiving night, my mother and I traveled half way to Dartmouth Hitchcock and stayed at a hotel.
We arrived at 12:30 in the morning Friday...
The first seizure rose my mother and I abruptly from our sleep at about 4:45am...
After the seizure subsided... My mother broke down in tears...
Mother:
It's not fair... (Classic response)
I didn't want this for you Rachel...
There must be an answer...
Came flooding out like a monsoon of pent up emotion.
Me:
Numb now to these emotions, I somehow mustered up the energy to counsel my mother...
Despite the urge to be resentful, angry and bitter...
I maintained compassion ... This is my life and others new to the trauma that is epilepsy have such a hard time digesting it... I get that.
I'm grateful my mother abruptly was thrown into the trenches with me.
The battle is only most real to those who preservere and fight each and every day until we let others in to join us in combat.. This is epilepsy awareness... We have to let others in our life experience that same RAW HOPELESS pain while we watch our sweet children suffer.
It isn't fair.
It fucking sucks.
But I must maintain strength for my child regardless.
I must be able to see the light and beauty in the short moments of clarity and fleeting consciousness.
I could choose to be bitter whilst watching others grieve our profound loss, the
child she would have been, had she not been tainted with this heartless and cruel condition.
But no, I choose to be in a state of compassion and love. Xo
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