Thursday, November 2, 2017

Spoken Words

Before we left the PEMU last week our epileptologist came in to discuss the results of the previous 24 hours.  To say we love her is an understatement because there are no words that could adequately express our true feelings towards her dedication and treatment towards us and Sonzee since we transfered to her care following a PEMU stay in July of 2015.  She is no ordinary doctor; she spends so much time talking with us one on one, answering emails, and visiting us in person when she isn't even the doctor on call.  I am not sure if it is just her personality or all epileptologists in general, but I am so thankful every day that she is the one we have on our side during this journey.

As we were discussing the clusters of epileptic spasms that "she doesn't like", but that we "shouldn't treat with rescue meds" because there are so many and all it would do is have Sonzee fall asleep and wake up and repeat; as a team we decided to turn off Sonzee's VNS, and maybe a 2 week reboot of her system would somehow do the trick and get her some semblance of control.  Within 5 minutes of turning off the device, Sonzee had one of her "typical" big seizures.  These are our normal, part of our daily routine, "whatever, this is our life" type of seizure and so I continue to carry on the conversation while Sonzee seizes and I stroke her body.  Her doctor looks at me and has a vacant, heart broken look on her face, and says "I don't know how you do this, and I am so sorry".  I shrugged my sholders and said "eh, this is life", and then thought about her words as my heart broke for her.

I did not choose to have a child who would experience these atrocious events.  I did not go grow up and wish to be a parent of a special needs child.  This was all given to me.  This is just part of my journey for whatever reason G-d felt necessary.  Yet here is a woman, who chose to study neurology, who decided to study an extra 2+ years to specialize in pediatric epilepsy, who takes the most challenging and complex seizure cases, who has years and years of experience, watching what I can only assume to be her billionth seizure of a child, and it's her job to find the best course of action to stop my child from seizing, but she can't, and so she tells me she is sorry.  I felt more broken for her than I ever have for myself.   I hope she realizes how amazing she really is and if I had that moment again I would look at her and say "I don't know how you do this, and I am so sorry".

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