Resurface

The pain that accompanies this experience is one that I am sure will resurface as the years continue to breeze on by. 

I was driving in the car this morning on the way to a toddler gymnastics class with Sonzee's baby brother.  I have been looking forward to starting this class since the minute he was born.  As the months past by I was so eager to enroll him, and finally about 3 weeks ago I did just that.  I confirmed that our beloved Coach Susan was teaching all the morning classes like she did over the previous years.  Halfway to the gym my eyes filled with tears as I was thinking the first time we set foot in this gym was 8 years ago, then our second child followed suit as soon as he was 18 months, followed again by our 3rd, but then our time with Coach Susan came to an end with Sonzee, and now here I am bringing baby #5.  At that moment I remembered I had written a post about that chapter closing.  While not completely surprised I found myself crying again in the car, it still caught me off guard.

My heart finds itself in a constant battle of celebrating these amazing family milestones and broken over Sonzee never being able to be part of them.  Had she been able to bear weight maybe we could have modified the class?  Had she been able to sit maybe we could have had her do the circle exercises?  Had she been able to use her gait trainer when she was younger and in an efficient manner, maybe she could have run in a circle?  Maybe if she hadn't spent her earlier years in excruciating pain we might have learned she loved gymnastics?  No matter how many therapies or activities we have tried her in, it won't ever make up for the things that she has been unable to participate in. 

Lately, my heart has been in so much pain over where we are today.  A giant disaster of a circle that truly is never-ending but yet always seeming to start back up with pain, discomfort, sadness, and difficulties.  I do not understand how much more her little body can take and I do not understand why it has to be this way.  I can't even imagine what else could pop up, but I am sure I won't have to wonder too long because inevitably it will present its unwanted self.  Not surprisingly, but yet at a level of fascination with myself, I cannot believe how spot on I was so early on in this journey to assume all of these emotions would resurface, because they certainly always do.

Chasing

She’s out on the corner trying to catch a glimpse
Nothing’s making sense
She’s been chasing an answer
A sign lost in the abyss, this Metropolis

It has been a little over 2 years since we first and last dealt with Sonzee's GI issues.  We have never really gotten a clear answer as to what is going on besides CDKL5, and the bandaids we have used always seem to fall off.  It has never sat well with me, but after searching in and out of state and with multiple professionals, "You are doing amazing with making the best out of a less than ideal situation" has always been how we have ended nearly every discussion on the topic.  Maybe that phrase is supposed to make me feel better over what little bit I feel we have been able to do to comfort her?  Maybe it is supposed to make me actually believe we have and are doing everything we can for her?  Maybe.

Here we are two years later, no better off, but not for any lack of trying.  If only that made our current situation any different.  We will be having another care conference, and for some reason I feel the same way I did on March 15, 2015 before I realized we were going to live a real-life nightmare.  Finding myself completely caught off guard despite knowing deep in my gut what the situation is.  No idea what I expect to happen but knowing something must happen.  Praying I am wrong while hoping the situation will just fix itself all on its own despite history proving repeatedly that will not be the case.  There is a heavy rock sitting in the pit of my stomach leaving me unsure what best/right choice will lift it and wondering about unanswerable questions.

I will never understand why our Sonzee must suffer the way she does.  I will never stop praying for the suffering to end, despite where that leaves me on this journey.  I will continue to tell myself and attempt to believe there is some real significant meaningful purpose behind all that she has to endure and hope one day it will be visibly revealed and that the bitterness inside me has not eaten me alive by that point.  

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A wish

I was putting my older girls to bed last night when I decided to ask each of them what they disliked most about CDKL5.  The younger one quickly said "the seizures", and after mulling it over a bit the oldest said "it is sad".  I first asked the younger one, "why do you dislike the seizures?", and she replied by putting her hands up, clenching her jaw, and saying "because you look like this".  I then asked my oldest, "why is it sad?", and I was told "because you cannot talk".  As I am sitting here I am asking myself the same question and I feel like it is similar to being asked, "would you rather be deaf or blind?".  Neither is ideal, both have their challenges, and I would rather none of the above.  However, if I had to choose what I dislike most about Sonzee's CDKL5 mutation my answer would be that she is trapped.

On Monday evening I received an email from one of Sonzee's doctors suggesting we put her back on the pain medication, gabapentin, at a higher dose than last time to help with the visceral hyperalgesia.  What if she doesn't even have stomach or intestinal pain and I am misinterpreting her vocalizations?  What if she is itchy or nauseous?  What if she just has a headache or is dizzy from all of the other medications she is on?  What if she is just a sassy toddler that cannot get her point across and she wants to be doing something else besides what we think she is wanting to do?

If one wish of mine would be granted, I would use it to have a day where Sonya could communicate to me.  A day where we could come up with a system for me to learn her specific movements, facial expressions, and vocalizations so that when our day was done I would still be able to understand her wants and needs.  I would ask her to tell me how she would prefer to be handled during a seizure and how best we could comfort her when it was over.  I would want her to tell me if I have completely missed the mark with my advocating for things I think she wants or my assumptions of her ailments.  There is not much else that is worse than the feeling I have in the pit of my stomach of being wrong about me potentially misinterpreting her discomforts and her being unable to tell me I am wrong.

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This, too, shall pass

It is 3:23am and little bear finished her seizure about 5 minutes ago.  She is back up to the 4ml dose of Zonisamide we attempted to give her last week while in the hospital.  We are trying to give this drug a chance, get her to a therapeutic level and then judge, but my gut says to jump ship.  I know part of that feeling is out of fear and the complete loss of control we have found ourselves in.  The other part of me believes whether it is now or a month from now, Zonisamide is not going to be her saving grace.

So here we are, here she is in this situation, and here I am back to my middle of the night posts and waking up to alarms and seizures.  I am angry and sad.  This is NOT what I want for my two-year-old, this is NO way to live, this HAS to stop.  But how?  Where is the magic?  Where is the cure?

I am doing my best to not play the "what if" game, to not analyze our decisions with a microscope.  I am telling myself that this would have been the outcome regardless of stopping Sabril, that this was all in the plan because we are in the dreaded toddler years of CDKL5.  That we are not responsible for her current situation.  I do not know if this is 100% true, but I also do not know that it is not.  I know I should try and be open minded.  As her doctor reminded me last week, we are running out of options, so I really want (need) this medication to work.

I am so beyond broken for little bear.  This is absolutely horrific to experience as a parent.  I am hopeful that we will eventually get her seizures under some sort of control, until then, the message I received in my bath bomb before bed is going to be what I make my brain focus on every time I close my eyes.

Deja Vu'

Pretty much since I started blogging I have followed a similar routine when it comes time to write my posts.  For the most part, I wait until all of the kids are in bed, I pour myself a glass of wine (or two), and I open YouTube so I can listen to the same song on repeat.  I am unsure if it is because of the message of the song, the notes of the music, or the actual lyrics, but what is a guarantee are the tears that flow on cue when I press play.  I guess that is why this has become the perfect therapeutic outlet for me.

The last month or so has been another tough one over here at Sonya's Story, especially for me.  There has been this lingering feeling of deja vu', I can feel it in my bones.  It is an eerie feeling; I know that we have traveled this path before.  One of Sonzee's biggest battles is with her GI system.  In May, she spent 28 days in the hospital and four days prior to me showing up at the ER frustrated out of my mind I wrote this post.  I am about at the exact same level of frustration, maybe even more because I have lived through that hell once already; I do not want to do it again.  I am just as sad as I am frustrated because I am fearful of my gut.  My gut has said since her labs in August that things are not what they appear.

I am so incredibly broken on the inside because I really do not know if there is anything we can do for her.  This has to be the absolute worst feeling to have as a parent.  I have been in touch with her team daily and/or weekly depending on their involvement, we are trying everything we can, but we do not even know what is really going on inside her complicated little body.  I know she is miserable.  I know she is frustrated we cannot figure out what she is telling us.  I know we are doing our best, but I also know our best just is not good enough, again. 

We are back at the drawing board, we are going to run labs, we are going to see results, but there still might not be anything we can do for her.  My feeling (and biggest fear) is that her intestines are following in the same path as her stomach.  I wish we knew what made her stomach stop working so we could figure out why it is happening to her intestines.  I am feeling like we are headed for a really steep drop on this coaster and I just hope my harness is on tight enough for this one.

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Grounded.

I have to remind myself to keep my feet on the ground, to only have tunnel vision.  19 months in and I know these feelings all too well.  It starts subtly and with some doubt, then the casual question between Sam and myself of "did you see that?", " what do you think?", "did you get it on video?".  We ignored the first questionable movements, but slowly the doubt becomes less and the panic starts to over take my mind.  What do we do? What's our next line of defense?  Do I email her epileptologist?

Ever since the varicella (chicken pox) vaccine her 39 day streak of seizure freedom was derailed.  I anticipated this would be the case, but as usual, I had some hope.  (I find the fact that I continue to use that word almost comical).  It started with some quick shakes (myoclonic seizures?) we originally wrote them off, and then a flashback of her first PEMU stay haunted my mind.  We have been doing the most slow wean of Keppra known to man kind (8 weeks), so after multiple shakes, I convinced Sam to go back to her previously weaned dose.  It worked, the shakes stopped.  I guess that solved that mystery.

But having CDKL5 isn't that easy.  Things can't be fixed so simply...at least not in our experience and certainly not for the bear.  So we plugged up one hole in the hose and then another leak sprung.   Now we are seeing the quick eye roll, the questionable head drop...the panic sets in, it's honestly suffocating.  It makes me want to get any drug to make them go away.  Then I take a step back, I go back into the tunnel...I remind myself she has a neurological disorder and she will always have odd movements, and her seizures are "refractory", after awhile they don't respond to medications...there really is nothing we can do.  Why am I panicking? The panic does nothing and there isn't any miracle at this moment either. 

So I need to find the floor and ground myself. I need to take a deep breath and let this unfold the way it's meant to.  I have to remind myself that there is no quick fix (or fix in general for that matter) and there (may) never will be.  It will always be trial and error and the sand will always fill the other side of the hour glass, but after it gets turned back over, we never know how long it will take for it to run out again and who knows, maybe one day a grain of rice will clog the path.

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