Stacking blocks

When my oldest was a toddler she had these rubber squeaking building blocks that she would play with.  She would take the blocks and build a tower high as she could before it would either tumble down to the floor or she got overly excited and decided kicking it down would be more fun.  Each time they fell she would squeal with excitement and then start the process all over again.  I can still envision her huge baby toothed smile while she was jumping up and down.  This morning her smiling face popped into my mind as I was thinking about how much this relates to Sonzee's milestones, more specifically her GI accomplishments, the main difference every time the tower falls there is no smiling face there to celebrate.

We spent years building tower after tower trying to find a solution to Sonzee's GI difficulties and pain.  Every time the reprieve would be short-lived and we were back to situating our building blocks into the perfect configuration to maybe reach some kind of success.  Finally, in December, after close to 3 years of being made aware of her struggles, it felt like our final tower was built.  Since then there have been a few occasions where a couple of blocks have fallen.  Every block that fell was replaced within a few days, maybe a week tops, but slowly the tower would resume its height and we would breathe in a sigh of relief.  It had been close to 6 months since the last time a few blocks fell from the top of the tower, so maybe my comfort in the situation was unfounded based on history, but since they say we are supposed to have hope,  we did. 

Over the past month, it seems like we have been traveling in a falling block zone.  It started with a single block falling, turned into 2-3, and now there is no proof there ever was a tower.  The base block is nowhere to be found, it too has lost its grounding and has completely disappeared.  We are back at square one, really below square one, everything has been erased, it is as if the tower was never built in the first place.  I feel defeated, I am angry and so incredibly sad.  I am in the place of wondering if this tower can actually be rebuilt or if our new tower will even include all the blocks we used in the first tower.  Everything is lost.  Everything is gone.  Everything has been erased, yet a tower needs to be rebuilt, but there is definitely no eager toddler awaiting the thrill of stacking the blocks waiting for them to eventually fall down.

Rerun

We are more than halfway finished with weaning one of Sonzee's seizure meds.  There is always the initial joy of watching skills return to her that we had somehow forgotten she once had, then there is the brief, but still, present sorrow that presents itself when we realize our choice of medicine is the reason the skills were put on hold.  Pair that with the fact that her seizure presentation was not significantly reduced or impacted by the medication, and knowing that our PEMU stay is going to present another medication as the (what is most certainly not going to be a) solution, and well, that continues to be Sonya's story.

This cycle of repetitious history you would think would make us wiser or at least pave the way to a clearer outcome, but for some reason, our continuous game of groundhog day meets real life is not changing.  Then there is the worst part that we somehow forgot happens when Sonzee is in a medication fog and it becomes temporarily lifted, her endless battle with her GI system.  The whimpering and pain that had seemed to subside, that we were optimistically thinking her gut rest had aided seem to be popping back up here and there.  The Aha moment always catches me off guard, takes me a day or two to actually realize I am entertaining and then smacks into me like a ton of bricks.  The question presents itself, "Was the gut rest and TPN the answer to her pain, or was the increase in her seizure medication masking her ability to process it?".  This answer, like every other one that is asked that would require her to be able to give us the answer, will always remain one of those unknowns.

The potential defeat that would come if the answer is the medication was masking her response to the pain will be so soul-crushing I am not yet at a place to fully even entertain it.  The potential disappointment that would follow if the answer is that the solution was yet again another failed bandaid will just be completely deflating.  Either way, the situation remains "wait and see", the question will soon enough become, "now what? ", and the answer will be whatever is feeling best for us to do for her at that time.

When?

I feel like this April, in general, hit me like a ton of bricks.  Deep down I know the reason is that we have been on this journey for 4 long years and even though each minute brings on something slightly different, the meat and potatoes are always the same.  It is the same race for a cure, the same challenge to find seizure control, and the same tight rope walking of managing a nonverbal 4-year-olds quality of life. The years seem to go by, the medicines and equipment change here and there, but the routine of it all stays the same.

Honestly, it is quite daunting.

It seems we are always trying to find the perfectly shaped bandaid to cover whatever difficulty Sonzee is facing, yet each time I feel like we are living out a real life version of one of those arcade games where you have to hit the chipmunk as it pops out of the hole with the rubber mallet.  Each time we manage to get one chipmunk back down underground, sure enough, the next one is popping up.  Sometimes I am quick enough to smack the chipmunk head on, a good portion of the time I maybe nick the side, but the majority of the time I am completely off the mark as I hover wondering which of the holes the chipmunk will emerge from.

Last night while dinner was warming in the oven, I was finishing up with TPN preparation, my sister and her family were hanging out waiting for the rest of my family to come over for dinner, and Sonzee was in her ppod, when she started having a 19 min and 50-second seizure.  That was not her first seizure of the day either, however, it was her longest by 5 minutes.  I stood next to her videotaping for the 10 minutes the seizure tracker app allows me to record, sent an email asking them to consider expanding the length of videos that can be saved on the server, and waited next to her until the entire 19 minutes and 50 seconds had passed.  Then, as if this is normal, because it is our normal life continued with getting her washed down and dressed for her TPN connection, yet as usual, I was left wondering what kind of life is this for a child, why does she have to endure this, and when is enough, enough?

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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How? Why? When?

Seizures have been consistently horrific since their debut (again) after the brief VNS miracle wore off back in July, however, this month it appears Sonzee is about to break her personal monthly record.  With three days of January still remaining, as of Sunday she was tied for October and December with a minimum of 415 minutes spent actively seizing each of those months...that is at least 6.917 hours.  Those numbers do not represent any questionable activity or brief spasms (even in clusters).  She has required at least one rescue medication a week since October, and we are extremely conservative with giving her those.  I am at a loss for words, I really do not understand, how does this happen? when is this horror going to stop? what is left for us to do?

I know this is what life is when CDKL5 is the diagnosis, but I am having such a difficult time accepting this for Sonzee.  She hardly complains except when the seizures are so horrible for her that they cause her to whimper afterward.  She puts up with every episode like a champ, sometimes even continuing on with whatever activity she was previously doing rather than falling asleep.  Regardless of how she handles each one, none of them are okay, none of them should be happening.  Why won't they just stop?  Why won't these medications we throw at them actually work?  Why is there absolutely nothing we can do for her?

I have become so used to seizures being part of our daily routine, their shock value has become nonexistent to me despite how dangerous they are and can potentially be.  I vividly remember the days when I wondered who would let their child seize 30 seconds much less 2 minutes before administering a rescue medication like the directions stated.  Now I wonder how I could possibly give her a rescue med at only 2 minutes when she will typically stop on her own around 5-6 minutes.  I have found myself saying, "what's 10 minutes?"  Are the addictive properties better or worse than the potential brain damage she could be experiencing?  Her brain activity isn't typical regardless, so I would prefer she not be exposed to more medications and so the clock can tick on. 

I wish someone could tell me how any part of this should be considered normal?, or why she continuously has to suffer? or when it will stop.  If I could have one wish granted it would be for her to wake up and have a functional CDKL5 gene, but until then I will continue to wonder how? why? and when?


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Gambling

I am not a fan of gambling, chalk it up to not wanting to lose, whatever the underlying reason is, I just don't care for it.  There is too much uncertainty involved, too much on the line, and while there is that chance I could win, there is a (bigger) chance (in my mind) that I will not.   There is too much uncertainty when it comes to gambling, and while some people enjoy the thrill of the experience, it honestly gives me increased anxiety, so if I can, I avoid gambling at all costs.

In February 2015 our journey of near daily gambling began, but instead of it being one of those situations where if you lose you can just shrug, walk away, and still go on your merry way, it became a gamble where it turned out even our best chances would leave us pained and drained on all levels.  There is nothing positive about making choices that will eventually backfire or provide more uncertainty.  I, the person who doesn't even like to put my money into the stock market because I consider it too risky, is stuck being forced to gamble every single moment with my 2-year old’s well-being and essentially life.

Last night I was making my new desk calendar on Shutterfly, because this year’s ends on October 31, 2017, and so I began to look through 2017 picture albums.  Every picture of Sonzee represents a decision that we made with the intentions of making her life the best it could possibly be.  We removed a tube from her face, traveled across the country for medical advice, had her undergo surgery, try (and fail) multiple anti-epileptic medications, try various medications to help her GI issues, and had her partake in various therapies (that honestly haven't ever made a difference in her capabilities).  When the tears entered my eyes, I was not sure of the exact reason.  Was it happiness over the ones of her smiling or sadness over the ones of my three typical children smiling without her in the picture because they were standing somewhere she couldn't be, she was asleep from a seizure, or she was in the hospital?  So many pictures involved the blue sheets of the hospital bed, hospital gown, EEG hat, or IV.  Each one represented a gamble we took in her honor to help, yet ultimately failed her in the process.

I try my hardest not to look at our failed attempts as a reflection on our decision-making capabilities or my bad gambling luck.  I tell myself this is just the deck of cards we have been handed and we are doing our best every day.  I try not to get angry over the situation, because it is what is meant to be, for her and for us, but this gambling is breaking me down.  Every decision if it has a positive outcome is short lived, and ultimately ends in heartbreak for us and it seems pain or discomfort of some sort for her.  I wish there was a crystal ball that gave us the right answers on how best to help her, but there aren't any right/wrong...it’s just outcomes that come from the best decision we can make at the time with the information we have....

...but no matter what, it will always be a gamble.

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Muddy water....

When Sonzee was first diagnosed with epilepsy and then shortly after with CDKL5, I would only bring up CDKL5 as the reasoning behind her daily seizure activity if asked, but would just tell inquiring minds that she had epilepsy.  As we added more diagnoses to her file she morphed into what I would begin to refer to as a "medically complex" child.  It was easier for me to summarize her to others with two words vs going into the extensive list of specific difficulties she presents with.  I never really considered that even within the land of medically complex she could be even more complex than any of her diagnoses summarized.  

We flew 2,344 miles from our home to have motility testing ran to help us treat her better.  In my mind, I assumed the results would match up with her symptoms and various GI diagnoses, and they would confirm that her stomach could not tolerate food.  I assumed we might be given different ways to manage her symptoms, but that at the very least her body would perform in the same manner it has for us each and every time we have tried to reboot her system and use her stomach.  Yet here we are and so far every single test is coming back normal.  Do not get me wrong, this is great in terms that her stomach is emptying appropriately, and we have specific evidence she has bad reflux, but it is also extremely disheartening because we do not seem to have a straight forward clear answer as to why she cannot tolerate being fed through her stomach daily. 

I suppose that is an answer, it shows there is no physical reason as to why she cannot tolerate foods.  It shows that theoretically, with time, we could transition some if not all her feeds back to her stomach.  It shows there might be potential for her to be fed by her mouth versus a feeding tube (given she does not aspirate).  However, it leaves us having to sift through the neurological component that is CDKL5.  It means that despite my best efforts to not use CDKL5 as the reason for everything Sonzee related, it seems to be the "only" answer to why that we have left.   

Since she was born I have always been on the search to uncover the cause behind her symptoms.  Maybe that is what all parents do when they are handed their unexpected present of a medically complex child.  In our case we found our overall why and it is known as CDKL5.  Maybe it is just me, but I used to think and say that if I knew the reason behind the "why" that I would be okay, that it was all I needed to know.   Maybe there is just no pleasing me, but I feel there SHOULD be an actual answer to why, other than CDKL5, because all I have learned in 2.5 years is that CDKL5 does not give us any answers and it certainly is not an answer in and of itself.  Then again, maybe there will never be actual answers and I should just stop searching... 

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Disappointment...again

For the past two summers I have created a list of "attempted goals" in my mind that I wish for Sonzee to achieve.  I always tell myself to be realistic, but to be honest, this is the one time of the year I actually feel extremely optimistic that during these four weeks there is no reason why she cannot progress leaps and bounds when there is nothing else to do but work with her.  Then the summer begins and the hours of each day pass by, the days turn into weeks, and I am left realizing that my fantasy of Sonzee gaining substantial ground is just that, a fantasy.

The scenery has changed, the environment is different, but the effect of CDKL5 is and always will be the same.  The seizures perform their daily havoc, actually, they are pretty much the only skill that she seems to make advances with.  Just 5 weeks ago she was having small little questionable moments, and now twice a day on average she has undeniable episodes.  I do not know when I will truly realize that we are not ever going to beat the seizures.  There is no magic potion to wave them away, and deep down I really do know this.

Her jumper is hanging in the doorway here in our townhouse and her stander sits by the wall.  Both have been used twice.  The Upsee has spent the entire time hanging in a bag on the laundry room door, my desire for us to walk together for 5 minutes a day has yet to be met.  Her bike sits by the fireplace next to a basket of toys she has zero desire to play with despite the various attempts her siblings and I make to get her interested.  Essentially, nothing has changed except my feelings of defeat are far more pronounced. 

It is the moments like these that I realize that even though I thought I had lost my hope with her, it was there, hidden away in a small space in my heart and mind, hoping to prove the majority of my heart and mind wrong.  In the end, all it does is leave a pain in my heart, a fog in my mind and it solidifies why it is I really dislike everything that surrounds the word "hope". 

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Never ending with GI....

If you have been following Sonzee’s journey for a while now then you are probably aware that her biggest battle has always been her gastrointestinal system.  Since she was six months old she has battled with gaining weight and from trying to solve that issue we found ourselves on a downward spiral in the land of GI.  We started by having a gtube placed, thinking that would solve the problem, but we all know that did nothing to help.  From that point onward it has been a constant battle of trying to keep her health and keep her comfortable, lately, both I feel we are failing with.

When she hit rock bottom last May we had no choice but to start her on TPN (Total parenteral nutrition: Intravenous feeding that provides patients with all the fluid and the essential nutrients they need when they are unable to tolerate anything into their stomach/gut).  We transitioned from TPN to intestinal feeds that went through an NJ (naso-jejunum-from her nose into her intestines).  A lot of people assumed her tube in her nose was going into her stomach, but it was actually bypassing her stomach and going into the 2^nd part of her intestines.  The thought or hope (if you will) was that her stomach would miraculously turn back on and we could get her off the intestinal feeds.  A year later and this has proven to not be the case (I am honestly not the least bit surprised).  When she was finally big enough, we had the NJ removed and they added in an extension to her stomach tube, which is what she has now, and it is a GJ tube (goes to both stomach and intestine).  We only use her intestinal port except to open the stomach side to let out excessive air in the hopes it will make her more comfortable.

She has had various tests performed on her GI system, besides showing she has extremely slow motility (movement of her stomach and intestines as far as processing food and moving it through the system), they all always come back “normal”.  She has spent most her days over the last year miserable, in pain, and uncomfortable from her feeds.  We cannot turn them off because she needs to keep hydration, we cannot run them any slower because she needs to keep hydration.  We are stuck, grid locked by the way her body interprets typical bodily functions such as gas, digestion, and bowel movements.  She was diagnosed back in November with visceral hyperalgesia, which is the term used to describe the experience of pain within the inner organs (viscera) at a level that is more intense than normal.  A diagnosis that gets her nowhere but to take another medication that does nothing to relieve her symptoms. 

I have reached my breaking point with these GI issues.  Her doctors tell me they have done everything they can do.  I agree that they have tested plenty, but I do not agree that there is not some option out there that would be a better answer for her.  We have an appointment with her palliative care doctor next week because her quality of life is far more important to me than the quantity.  She CANNOT be this miserable any longer.  It is beyond disheartening to watch her suffer daily.  There must be some solution besides “dealing with it” and another medication that only appears to be a solution but in reality, does nothing long term.  I am hanging onto a small thin thread of hope that we will reach some sort of resolve next week, whatever it may be…but let me tell you, after the past two years it’s really challenging to believe we will find a winning solution.

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Only human

Whenever Sonzee's seizures start to occur more often and increase in intensity, it is only a matter of time before my tightly woven sense of control quickly starts to unravel.  It begins with me reminding myself that watching and waiting is the best course of action.  It then turns into a friendly email to her epileptologist, usually accompanied with a video or two for her so she can share her opinion (which 95% of the time is agreeing with my observation and thus giving me a little jolt into reality).  I then brace myself because I know her follow up email is going to include a medication increase, and by this point I am only half on board with her suggestion.  1/3 of the time the first boost in medications does the trick temporarily, but the other 2/3 of the time we might as well be syringing her additional doses of water.  Then a few days go by and we realize things are getting worse, the emails continue back and forth, the seizures are more often and longer and scarier, resulting in us maxing out all the current medications she is taking.  Despite knowing that this will most likely do nothing, we have no choice...right?   

Besides the obvious negatives of the medication change not doing what its sole purpose was intended to do, there is now the figurative ledge I find myself trying to balance on as the winds pick up their speed.  The moment by moment nerves, the anticipation of the unknown, the fear of realizing that our options are dwindling and even if they were not, we know nothing will work for long.  The desire to figure out the trigger(s), is she getting sick? is she sick but her body is hiding it well? is it just CDKL5 in all its glory?  I am overwhelmed with doubt, my mommy-gut is confused and challenged, I am numb and do not know what the right answer is.  The chaos of the situation fills me to the brim and I feel like I am standing in a room that just spins around me and I cannot find the door.  As the room spins and walls close in on me, I am supposed to believe that "I can do this", that "I can handle this, and "that I am strong"...but I am only human.  

No matter how many times or how often we find ourselves here, in this exact situation, I have not learned how to handle it properly.  I can carry on small talk and keep my feelings inside.  I can fake a smile, and make myself laugh, I can put on a good show, but it takes everything in me to make it through weeks like these.  I can only take so much of this before I break.  I do not understand how this situation is meant for someone like me, because honestly, I am only human.

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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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Tough times...

It's another one of the times while on this journey that I don't dare think "it can't get worse", but rather wonder what exactly it will look like this time.  Whenever the incessant crying begins things always go down hill and rather quickly.  Maybe it is because I am grappling for something to hold onto that makes the fall feel that much quicker or maybe it is just that my patience and ability to cope at this point has evaporated even faster.  This. Is. Hard.  (Yes, I did just write one word sentences)  I never assumed that it would be easy, but I didn't really understand this version of hard.  Sadly, there is a mom reading this with a tear in her eyes thinking..."you have no idea".

This is such a painful journey.  It hurts on a physical and emotional level like nothing else and sadly there is no outcome that could change that.  I cherish the days that are good and result in Sonzee smiles and giggles, just as much as I loathe the ones spent on hours long crying sprees.  It is beyond horrific to have to see her be in such agony.  The worst part is there really is nothing we can do...we are doing everything we can, it is just that nothing is good enough, nothing works for any acceptable amount of time.  I dislike that everything with CDKL5 is trial and error, I want the "tried and true", the "sure thing".  Why doesn't that exist?

I would say "I don't know how much more of this we could all take", but I know that we will take it for as long as we have to and for as long as this is the best it can get.  I just really really hope that a happier alternative will emerge sooner rather than later.


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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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Angry/Sad

I am in one of my negative phases of being a special needs mom.  I am sad that my child is constantly in pain and suffering, I am angry because it is my child this happened to.  I know there are others in the same boat and I know you get it.  I know this is just par for the course and that I am not experiencing anything ultra special, but I HATE IT.  I hate that I cannot just be living a regular mundane boring life where my biggest concern is how many hours my children will spend in after school activities.  I miss the days of normalcy we once had and I miss that I cannot even think of one of those "huge issues" I used to think was huge because now it has become insignificant.  I miss the days where a decision did not directly relate to Sonzee's quality or length of life.

It breaks my heart that a cold/virus that a typical resilient child bounces back from overnight will take my little girl approximately 6 weeks to get back to her baseline.  I hate that waiting that long does not grant guarantees.  I am so angry she has to suffer all the time.  There is nothing that is easy for her, nothing that comes free.  After we meet with a specialist, she is sent home with eight lines of home care instructions where three are for pain medications, three are to try to determine the cause, and two are simply to keep doing what we are doing with her.  

It is absolutely draining as a parent to constantly feel like you failure because you cannot make things right, there is no way to fix any of this.  There is no doctor that has an answer, there is no child with CDKL5 who has been given a cure, and there is NOTHING that we can do but treat whatever issue arises with our best hand of cards...and pray it is enough.

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Complicated expectations

Often times my posts are written in my head while I am out and about as the random thoughts filter through my mind.  Some of the time I actually find myself smirking realizing all of the craziness that is occurring in my head during that time.  It is completely baffling to me how one minute I am "worried" about Sonzee's developmental milestone achievement and then a moment later her milestones are the most distant thoughts as I am overwhelmed with happiness that she is just breathing and we aren't at the top of the coaster looking at the end of the track.

This honestly happens multiple times throughout my day.  Thoughts that contradict themselves bombard my brain and confuse me to the nth degree.  To give it a visual representation, imagine that you are standing in a dark room and there are thousands of words flying at you from all angles.  Some of the words are huge, others are tiny, but all of them are white and bright.  They go by so quickly it can be hard to make out what they say.  It makes processing what I really feel an extremely daunting task.  I have to yell at myself to focus if I want to make any sense out of the situation.  Then I start to dissect my thoughts.  "Should I think this?"  "Shouldn't I just be happy with where things are?"  "There are other children worse off.  She has been worse off."  Etc. Etc. Etc.

It is when things are seemingly stable that I am less afraid to admit to myself that I wish my 20 month old would be able to sit on her own.  I know I am allowed to acknowledge this feeling, and I know it is acceptable, but I feel petty a lot of the time for caring about her accomplishing milestones.  For each thought that pops into my mind, its counterpart is right there by its side.  "I wish she would not succumb to the typical stereotypies and sensory issues of having a CDKL5 disorder, such as hand chewing."  (That really is so benign, why does it bother me?)  "I wish she would bear weight on her legs", (they are getting stronger).  "I wish she would notice me when I look at her face", (but if I make noise she does).  "I wish she would show her siblings that she loves them", (On occasions when our oldest plays with her arms and talks to her excitedly, Sonzee gives her the biggest grin).  My mind is constantly playing devil’s advocate with itself.  The reality of this life and the guilt for feeling unsatisfied at times are so intertwined with one another.

I want her to just be normal, but I want her to be who she is meant to be.  I really do not have any specific expectations when it comes to what Sonzee will achieve in her lifetime.  We meet every 6 months to create goals for her and most of the time we just keep them the same because they have not been met.  I have hopes and dreams galore, but who knows when or if they will be accomplished.  I do not want her to ever feel like she has let me down nor do I want to place unnecessary pressure on her, and I want what any parent wants from their child...for her to grow up and be happy.  It is annoying to me that every single aspect of her life has to be so complicated.  

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Disappointed but not surprised

I am disappointed, but not surprised.  I assumed it would only be a matter of time before her little seizure freedom vacay came to an abrupt end.  I wish it could have lasted 40 days.  I can only describe my feelings as similar to planning a vacation around a blizzard or a hurricane.  You hope and pray that you will make your flight and your trip will not be cancelled because you know at some point the weather will make everything close down.  In the back of your mind, you can still envision the fun that will ensue if you should be so lucky to make it to your final destination.  When it is time to be on your way you learn that your flight will be cancelled and they do not know when they can re-book you.  You are angry, sad, and extremely disappointed, though this was not shocking news, so you turn to plan B.

I wish we had a plan b.  I mean we do in a sense, we actually have a plan b, c, d, and e, but just like most plan B's they are not as good as the original plan and honestly, I just want my original plan back.  Oh wait, that plan has not been followed since 2/11/15, so I guess I will just suck it up and continue with the windy path that we are following.  I do not want to apologize for my bitterness, but I probably should.  I am just so sad and frustrated right now.  I wanted this seizure freedom to last longer, although I know deep down that is such a selfish request.  Plenty of children who have a CDKL5 mutation are not afforded 39 miraculous days of peace and tranquility.  I really am truly grateful for the time she had free of all of the fogginess in her little brain, and I can only pray this little setback will not turn back into the full-blown chaos it once was.

I can tolerate their return as long as they do not steal our little bear away.  I am willing to compromise as long as they are not relentless and unforgiving.  I know what they are capable of and I just pray they are in the mood to negotiate.  All of our potential plans are currently in a holding pattern as we figure out what the best move will be.  It is always a delicate balance between bringing out the nukes, the tanks or waiting and watching.  I also need some more time to wrap my head around the fact that our vacation has been cut short and we have not received our new itinerary.  

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Dear seizures

Dear seizures, 

I have been penning this letter for some time, waiting for the moment that I had enough courage to express accurately my dislike, anger, and overall hatred for you.  I hope this note reaches you when you least expect it, when you are relaxing from your long day of atrocious hard work, after you are finally settling in to rest and you are completely unaware of what is about to come at you.  I hope you are shaken to the core and completely sucker punched; you know, similar to what you do daily to my 17-month-old daughter and ALL of the children that suffer from the sudden abnormal electrical activity you love to share.

You are simply unrelenting as we, the defenders, play a delicate game of "walk the tight rope", balancing between medicating enough to maybe put you at bay and keeping our daughter's essence alive.  You have taken so much already from our daughter that your continued presence simply sickens me.  Each second of every episode that you infiltrate my daughter's beautiful body is another second I spend loathing your mere existence.  Today, alone, that was approximately 900 seconds.  That is 15 minutes of my life I spent feeling utterly helpless, fighting back tears with my heart torn into pieces watching as you took over the body of a helpless child.  It is so beyond frustrating and challenging to find the accurate words to express to you the complete and utter disdain I have for you.  I wish you were tangible so I could find you and give you the reciprocity you so deserve.  

I wish there was a magic potion I could find that would make you vanish from this world so no other parent, caregiver, sibling, or person in general has to witness what I do on a daily basis.  Most importantly, I wish there was a remedy mainly so no person has to succumb to the negative power you possess.  Too many parents have watched you take pieces of their children away from them far too often.  Too many parents have watched you literally suck the life out of their child.  Too many parents have you to thank for the disabilities their children experience and the daily struggles they endure.  Too much heartache and too many tears have been wasted because of you!

What I want you to know is that despite all the negativity you represent, and all the hurdles you place in my way my mission will remain constant and I WILL NEVER QUIT.

I will never give up the fight for a cure to stop your electrical misfiring.  You should spend each moment in constant fear that TODAY will be your LAST seizure.  You should live in a constant state of panic and worry that you will be obsolete from existence and that your damage will NEVER continue.  You should never get to the point that you feel you are a match to every drug manufactured, because my daughter and every other child and person who deals with you on a daily basis is far more resilient.  Most importantly, what you should remember is that every person you are attacking has a momma bear on the defense, and so my friend, you are the one whose days are numbered.

Good luck, 

From a fierce unrelenting momma bear warrior whose life mission is to eradicate you

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Anger

I have always been aware that this journey would follow a similar pattern to that of a grieving cycle.  I understand that the stages of grief can become blurry and that at one-second there can be feelings of acceptance and then snap, the feelings can quickly change to feelings of sadness.  Throughout the last 15 months, I have allowed myself to feel depressed; I have attempted to control the situation by thinking if I was better or changed my ways than maybe a different outcome would occur.  I have “come to terms” with all of the various courses of treatment we have had to try, as well as allowed myself to face the realities of the potential possibilities.  I have allowed myself to enter into the fantasyland of denial, because let us be honest, it is much more fun to dance among the stars.  What I have tried my hardest to do during these past 15 months is to place my anger on the backburner. 

I have had many a conversation with myself (you know you all do that too) rationalizing that getting angry does not serve a purpose, that it won’t change things and it is just a waste of my time and energy.  If I allow myself to be angry, that would indicate there is a person or thing to be held accountable.  (Sometimes I think it would be so much easier if that were the case).  I can justify why being angry is useless, why it will just make me bitter and well, obviously even angrier.  I can list hundreds of reasons why I should not feel angry, but what is becoming increasingly difficult is actually buying into my own logic.

The worst thing about giving into being angry is that I am even angrier with myself for doing so.  At least when I am in denial I can enjoy the moment while I daydream.  When I am bargaining with G-d for a change, I feel proactive, as if I am doing something that WILL help the situation; that will help Sonze.  When I get depressed, I can cry and tell myself that it is all part of the process and that it is necessary because this situation is sad.  However, getting angry, it does absolutely NOTHING.

There is NO tangible reason why my child has a mutation on her CDKL5 gene.  I am not even privy to a spiritual or philosophical reason for that matter either, and probably never will be during this lifetime.  There ARE not people, nor even ONE single person that can be blamed for the frameshift mutation on exon 9 of Sonzee’s CDKL5 gene.  There is NO one I can point a finger at, NO ONE to direct my anger to, No one that is, except G-d.

The spiritual part of me accepts that Sonzee’s CDKL5 mutation has more to do with her soul and its specific purpose here on earth.  The spiritual part of me truly believes that my job is simply to assist Sonzee as she fulfills whatever it is that her soul’s mission needs to complete before leaving this earth.  The spiritual part of me knows that neither she nor any of my children are actually mine, and they are all simply here in my care for me to help them do what they each need to do during their lives.  Then again, I am human.  There is that pesky human side of things, constantly getting in the way.  The human part of me is what is so angry.  Angry that I am forced to watch my child have seizures, pain, and constant daily struggles. I am angry that I do not even have anyone or anything to blame for my current predicament.  I am angry that this situation challenges me in every way imaginable.  I am angry that this situation has left me doubting my beliefs, my feelings, and myself in general.  Since my human side seems to be winning in this spiritual/human battle, it would be nice if my anger would be a benefit to Sonze, because if that would be the case, I can assure you her CDKL5 frameshift would be undone and she would no longer have a mutation on her CDKL5 gene.

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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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