It's been 4 years....

It's been 4 years and yet I was caught off guard on Friday.  I would like to say this is rare for me, but for some reason this past week, I have been experiencing all sorts of whacked out crazy sensitivities and emotions.  Maybe it is the accumulated exhaustion of participating in this journey over the last 4 years?  Maybe it is the fact that I prefer to not deal with a lot of my emotions because I tend to write a blog post about how I am feeling in that moment, press post, and then move on.  More often than not that way of living has seemed to work best.  But then there are those moments, like Friday where three concepts slammed into me at full force despite the fact that I have dealt with them multiple times over the last 4 years.

It became extremely clear to me on Friday that I am not over Sonzee receiving her CDKL5 diagnosis.  So for those of you just starting out, 1 year, 2 years, 3 years, 4 years or even more into hearing the string of characters "CDKL5" it is completely normal if you have yet to accept its fate or if today it is just clicking what it might actually mean.  As I sat with Sonzee's epileptologist and she answered the same exact questions I have asked every PEMU stay since 2015, on Friday, it clicked.  Even if we gain some sort of control of her seizures, which we all agree she most likely won't ever be seizure free nor will she likely ever be 90%, it won't change her background and it won't change the fact that CDKL5 is the reason she is able to do what she can and not able to be typical.

This led me into the 2nd revelation; the one where it becomes clear that even though I don't speak the words and I don't put much faith into it, somewhere in my soul I still believe there is hope for her, because it is during moments where I feel the wall slam into me at 500 miles per hour that I realize the slamming feeling is because I was obviously holding onto some sort of hope.  The hope that maybe one of these PEMU stays it will reveal she does not have an abnormal EEG background.   The hope that one of these PEMU stays will reveal she isn't seizing unless we notice and hit the red seizure button.  The hope that one of these days she will wake up and be typical.

Which led me to the final revelation that we are never going to fix her.  We appreciate who she is, we love her the way she is, but honestly, if you told me a specific amount of money would make her be able to become a typical child, I would pay it plus a tip.  I do not know why all these 3 items became clear on Friday.  I have heard the answers before, I am sure of it, and I do not know why, but for some reason, it all clicked and since then it has been weighing me down like a ton of bricks.  I am having an extremely difficult time comprehending that nothing we do for her will ever make her better.  No medication is going to stop her seizures, no medication is going to clear up her background, and no medication is going to fix her...but for some reason knowing this we still cycle through medicine cabinet trying to find the answer....and it's been 4 years.

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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Same place different year

It is 10:45pm on March 20, 2017 and we are in room 8128.  We do not normally face north so this is a nice change of view for me, instead of watching the planes fly into Sky Harbor, I get to watch the cars drive on SR 51.  Since March 2015 during this exact week I have found myself surrounded by the same walls, in various identical rooms, and usually cared on by a friendly face.  With a stroke of luck, it just so happens that tonight we are with one of Sonzee's very first PEMU nurses.  One of the benefits of the experience is when the nurse coming to take you to your room opens the door and says "welcome back" and you see the same smiley face that has been there to wipe your tears in the past.  

There are so many adjectives that I have in my mind to describe being in this predicament; comical takes the lead, followed by unfortunate, nervous, weary, relieved, eager, and my list definitely goes on.  I foolishly started to think that we would slide right past this anniversary without celebrating in Sonzee style.  I suppose that is what I get for getting too overconfident, for thinking that things could actually take a positive spin for little bear.  This is the part that hurts me the very most.  I just cannot understand why my baby girl just cannot catch a break.  Every time I start to see a small glimmer of hope it just gets ripped away.  I really am having a huge challenge comprehending this reoccurring Groundhog Day type of testing.  Clearly something is not being done correctly or it would have stopped repeating already.

This is one of those parts of living the medically complex special needs type of life that makes you muster all that is inside you and push through because there is no other choice.  There is no other way to make it through these times without reminding yourself that there is clearly a reason for all this pain and anguish and it will one day be revealed...unfortunately it was not in 2015, 2016, or 2017...and in 2018 I will just buy Sonzee a cake and schedule an in-home party for the week of March 18.

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