Resistance

It is the second week of February and this will be my third official post of the month.  I would like to say it is because I do not have much to write about, but it is more that I have no energy to put onto "paper" what is circulating in my mind.  It is partly because I am sure I could go to the search bar on this blog, type in a few words and voila, my exact thoughts, feelings, and words will be staring back at me.  I am beginning to realize that is just going to be how life works when dealing with CDKL5.  The seizures come, you throw out your best weapons, sometimes you win, more often you lose, but no matter what, you end up back where you started...in your arsenal staring at the walls and debating.

For 14 days, we have been trying to gain back some semblance of control, for 14 days she has had 1-3 seizures a day, for each of the 14 days she has spent an average of 4-12 minutes not in control of her body, for 14 days we have yet again failed her.  Feeling like a failure in this department is absolutely crushing.  There is nothing I can do personally to stop these things from coming.  There is no way to explain to her that we are trying our best and that our best will not ever be good enough.  It will not ever be good enough to just try to find a solution, and there is no solution for refractory epilepsy.  That is why refractory epilepsy is also known as uncontrolled, intractable, and drug-resistant epilepsy. 

There is no positive spin to put on seizures, no silver lining or ray of sunshine.  There is honestly nothing good that comes out of watching your child suffer and being unable to put a stop to it.  It has been two years since I knew things were not right, and while I am numb to the experience of watching her seize, and to the seizures themselves, I am not anymore okay with the feeling of daily defeat that goes with all of this.  I know I will not ever be, I do not think any parent could be.  I guess it is only fair that she is not the only one resistant to something.

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Retrospect

One of the best things about this blog is that it allows me to go back to a specific time and see what my actual thoughts were at a specific point on this journey.  As I begin to read the first sentence of my previous posts I am actually transported back in time to the exact moment I wrote the words for the first time.  The brain is such a fascinating tool in that sense, capable of triggering memories so vividly and easily.  When I read some of my posts I think about how the feelings I had are still the same to me now.  There are a lot of posts that still leave me unsure, while others leave me almost annoyed with how naive I once was.  I guess all the emotions are just a true representation of the stages a person can go through while on a journey such as this one.  The good, the bad, the ugly...but all the truth.

Prior to beginning this post I decided to view some of my writings from last June.  "Wonder", "Hope", "Experience", just three examples of the names of posts written during CDKL5 Awareness month in 2015.  It is a year later and I could easily write sequels to each one, but they would probably be headed in completely different directions.  When I read my older posts I can almost believe the actual hope and the actual belief in a miracle I once had.  I can still feel the certainty I once had that Sonzee would defy the odds and she would excel in areas that previously diagnosis children had not.  Part of me pities my older self for thinking those words could actually become our reality, Sonzee's reality.  The other part of me is so angry that I no longer have faith in those wishful words.  

I actually feel ashamed for admitting that aloud.  It makes me feel like a bad person for acknowledging that I currently don't have any hope or belief in a cure for Sonze, or that I actually do not expect her to defy the odds.  It makes me feel so weak, like I have let this disorder take the dreamer out of me.  It makes me feel like I am letting people down because I am not as strong as people consider me to be.  Then on the flip side I feel justified that I am not living in a fantasy land of maybes, could be's, or what ifs.  That doesn't do any good for myself, for our family, or especially for Sonze.  It makes me feel strong that I am able to be honest and realistic about such a devastating disorder and not sleep away my life or want to hide away from the world.  It makes me feel like I am letting people know it is okay to be true to their feelings and that there is no correct way to deal with a diagnosis such as a CDKL5 mutation.

This ride is turning into more of a "Tower of Terror" experience.  Moving around on the ground floor, then going upwards until finally you are located in the elevator shaft.  You brace yourself ready for the great 13 floor drop only for the drop sequence to be randomized for each elevator car.  So you find yourself going up and down never really certain how far you will actually drop each time or how many times you will fall during your single ride.  One thing is certain, you will eventually fall 199 feet and land safely at the bottom of the elevator shaft.


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Dealing with "It"

I am currently riding at the bottom of the coaster.  The part right after the steep drop and right before the track begins to quickly twist and turn, and you find yourself unsure which way is up or down and where exactly you are in relation to the start and finish.  The part where you take a second to regain focus and grip tighter on the harness because your stomach is in knots and you aren't quite sure what you are feeling or thinking.  The part where your mind is almost blank because even that is disoriented and needing a moment to find itself.  It is safe to say I do not like this portion of the coaster at all.  In fact, if the coaster could stop so I could walk to the emergency exit it would be greatly appreciated.

This part of the coaster in relation to this journey is one that today I would say I dislike the most.  The part brings on doubts, clouds my judgement, blurs the future, and makes me one hot emotional mess.  The type of mess that really doesn’t care if I am out in public with visible red eyes, dark circles, and others might be made to feel awkward when they look at me because they can see the pain on my face and tears in my eyes.  It’s the part of the journey where the words “I don’t know how you do it” make me think in my head and want to say aloud, “It’s all a façade, if you ask me something specific I am going to hysterically cry right in front of you and you’ll see I am not doing “it” at all”.

Let us have a moment of pure unfiltered honesty.  “It” sucks.  “It” hurts.  “It” is awful.  I would not wish “It” on my worst enemy.  “It” is so indescribably difficult.  I wish “It” would not leave me feeling empty, guilty, or unsure.  I wish “It” would not cause me to doubt every decision we have made or cast a shadow of doubt over the past, present, and future situations.  I wish “It” did not result in some unfair decision that ultimately came down to choosing the “best of the worst”.  I wish I was not having to deal with “It”.

It has been 15 months since Sonzee came into our family.  I wish I could say that we had blissful moments as a family of six that were rudely interrupted by seizures, doctors, and illness, but that is not the case.  20 minutes after she was born we were thrown into “It”.  15 months of facing the most challenging experience of my life.  15 months of continuous unknowns.  15 months filled with more ups and downs than a person should have to psychologically deal with in one lifetime.  The very worst part of “It” is that I do not want “It” to ever end.  

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A slump resulting in A CALL TO ACTION

Growing up I was always the athletic type.  I participated in pretty much every sport that was offered in whatever location we were living.  Softball ultimately became my game of choice.  I find it comical that my least favorite sport to watch is professional baseball, but I digress.  Softball was my thing.  I mainly pitched or was the short stop.  When it came time to my position at bat, it was typically 4th.  My nickname as well as the word written on the back of my shirt was "slugger".  The sport of softball and I clicked.  It was something I had a natural ability for, but at the same time I still had to practice religiously.  There were times that I struggled with my game and found myself in a hitting slump.  

I wish I remembered exactly how I worked my way out of those times.  That would definitely prove to be valuable information to me these days as I find myself in a constant fog.  The adjective I would use to describe my disposition...  "A slump".

I feel my overall performance level is well below expectations.  This is trickling over into every aspect of my life.  I feel inadequate as a mom as I am short tempered and I do not feel like I am giving all of the kids my undivided attention.  That part alone feels nearly impossible.  My mind is constantly racing; there is no way that my attention could be anything but divided.

As far as climbing out of the rock bottom pit we have been in in regards to Sonzee's health and development...it seems that challenge will be never-ending.  When I think she is on the mend, something random comes unexpectedly and knocks her back.  I wish things would get easier for her and stay that way.

In regards to my blog posts I feel like my slump is related more to the simple fact that I just do not feel like I have many uplifting words to share.  I want so badly to have words of wisdom and a nice little fortune cookie type of message that people walk away from the screen feeling all warm and fuzzy on the inside from reading.  I just do not feel like I have that type of stamina in me these days.  I try to abide by the "fake it, til you make it" type of approach...but the amount of energy it requires to simply "fake it" is even beyond my current capabilities.

In terms of Sonya's Story and raising awareness and finding a cure for CDKL5, it feels as if we have hit a roadblock of sorts.  While this blog provides a source of much needed therapeutic comfort, my main goal is for us to help bring awareness to CDKL5 at a significantly higher level.  We need the character string of CDKL5 to be known by MORE than just the children and families whom are personally impacted.  We need to reach farther out of our inner circles and get the disorder out there.  CDKL5 is important, our children are important!

ALL the children of CDKL5 need US to help them find a cure.  This is not just about Sonzee.  This is about bringing awareness for ALL of her CDKL5 siblings.  This is about helping CDKL5 gain momentum so more money can be raised, so more research can be completed, so children do NOT have to suffer, and so children do NOT have to die.  So families of these children do NOT have to suffer.  So NO ONE has to suffer due to CDKL5.   

For those of you on twitter our handle is @SonyasStory and please fill your twitter feed with #CURECDKL5, #CDKL5, or any other hashtag with CDKL5 on it.  For those of you on Facebook share this blog post and our journey.  For those of you with any type of media connection, sports connection, music connection, any connection...PLEASE CONNECT US!!!  Please help us tell Sonya's Story and that of her CDKL5 brothers and sisters!!!!  

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