Puzzle pieces

A few weeks ago, my middle daughter brought me a 500-piece puzzle and emptied it on the floor.  She asked me to help her put it together and I got excited.  After separating the corners from the insides, I realized that when her baby brother woke up, the floor was a bad location, so we moved it to the counter.  It started with her helping and then eventually she just wanted me to finish it.  Honestly, it was really relaxing, and it was something I looked forward to completing.  It sat unfinished but being worked on for about 2.5 weeks, but really it was only 4 days I actually spent on it before it was done.  Sam thought it would be a great idea to glue it, frame it, and give it to the girls, so the plan was for it to sit on the counter until I got all the supplies.  Before that could happen, my middle daughter was looking at the completed image while eating breakfast and loudly proclaimed, "I am going to take this apart and do the puzzle again", and before I could speak the puzzle was back into pieces.

Staring at the location of where the puzzle was placed on the counter I could still see it sitting there, complete, and ready to frame.  But then I blinked and remembered that I would have to start all over again if I wanted to see it completed.  I left the puzzle on the counter in pieces for a few days, but ultimately decided I needed to take a break, and a deep breath.  I put it back into a bag and decided I would take it out another day when I was ready to tackle the job again.  So much of our situation with Sonzee is just like a puzzle.  We spend so much time sorting out the best way to bring out her best; we,  including her entire medical team do our absolute best to get her "back together" every time that something within in her falters, yet we always end up back at square one with a bunch of pieces in a pile.  

Yesterday Sonzee had one of her follow up appointments that was scheduled following her last inpatient stay.  It was an appointment I was eager for her to go to because its purpose was to give us the clearance to move on with original plan that was created while she was inpatient.  Over the next week and a half all the puzzle pieces that have theoretically been laying on the counter will be placed into their proper piles.  I am a little apprehensive over what is to come, mainly because I do not know what the final puzzle is going to look like, but it has been enough time that I am just eager, excited, and ready to put this puzzle back together.  

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But I wish...

I was scrolling through my Facebook this week and there was a little girl who is similar in her presentation of CDKL5 as Sonzee, and she is now sitting unassisted.  I was honestly so excited for her and even more so her family.  She has no idea how much that little milestone will mean to them.  It is one of those milestones I have shelved for Sonzee; it is just easier that way.  After I scrolled past I did not keep thinking about her sitting, but then another image of her sitting appeared, and it bothered me that Sonzee never has gotten to experience that sort of independence. 

I really do not know how or even if her life would be drastically different if she was able to sit unassisted.  Would she even like it?  It is not as if she would be able to crawl out of sitting, or interact with any toys, so maybe her being unable to sit is saving her from the frustration of being left in the middle of the room to essentially do nothing.  I wonder why I cannot truly accept these limitations her body has on her.  I wonder if it is just because there is an inescapable guilt that comes from not being able to help her achieve these developmental milestones.

I do understand there is not anything I can do more of to help her, it is either something her body is able to do or something it is not.  It has little to do with any choices Sam and I have ever made regarding her medications.  It is not because we do not have her enrolled in 12 hour daily physical therapy sessions.  There was not something we did or did not do to cause her to be unable to sit.  It just simply is not in her DNA.

But oh, how I wish it were.

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Miles

I went to a baby shower yesterday that was 41 miles away from our house.  Driving there was for the most part relaxing, I enjoyed the silence, the alone time, and was only mildly stressed about being late.  I kept checking maps to see the estimated time of arrival to see if it was going to change, but for the most part I was pretty content with the predicted time I was going to get there.  The event was a lot of fun and even delayed leaving a bit at the end due to the anticipation of knowing how long the drive was going to be going home.  As I got into the car for the drive home, I opened a ring pop because why not?  About halfway into the drive, around the same time that I wondered if I was ever going to finish the ring pop, I began to get antsy about the length of the drive that I knew remained.  I kept thinking how I just wanted to be home at that exact moment, but I knew that was not at all possible.  At the same time, I began replaying a conversation I had a bit earlier regarding Sonzee and I realized how much of our journey with her was similar to the feeling I was having about the drive.

It is funny how the drive to whatever situation we find ourselves in with her is always quicker than expected.  It is almost as if there is this unassisted rush to get where she is meant to be, yet there is no real eagerness to get there and we just follow the path casually.  After we "arrive”, and things settle a bit and we get a chance to maybe anticipate where we could end up, it is then that I feel this imperativeness to get to the next phase as soon as possible.  Yet it is always at this point that it feels like it takes forever for the wheels to get into motion and for us to gain any ground.  It is as if time stands still and there is all this time to reflect on where she has been, where we are, and where we may or may not actually go.

As it stands today I know where the nearest path is taking her, and it was one of those slow yet fast trips that is bringing her to the starting point.  Part of the outcome has been a long time coming, resulting from multiple consultations and literally years of pushing it off.  Inevitably we knew we would find ourselves embarking on these next steps, yet I am so nervous and scared about how it will turn out.  Naturally in true Sonzee fashion she threw in a few extra speed bumps and we are also faced with completely new territory that is also just as nerve racking, but I think mainly because of its unfamiliarity to us.  We continue to travel along this slow/fast paced road, taking things as they come and go, yet ultimately wishing things would "hurry up and finish" so that we can all take a break and maybe settle into a comfortable status quo, but ultimately move onto the next, hopefully, more happier portion of her journey.

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So it begins....

Literally every year since we have been part of the CDKL5 family fall has become a season I have grown to loathe almost as much as all of the challenges mutations of CDKL5 bring to every family affected.  It is with the changing colors of leaves (in every other place besides Arizona and Florida), with the breezier air, and with the near end but almost strongest hurricanes of the season, that our tiny little family is reminded of just how relentless CDKL5 mutations can be.  Fall is when we all get the friendly reminder that is never very far from our minds; that our children can be taken from us quickly, without warning, and with no real justification as to why they had to suffer or have challenges in the first place.

Yesterday Sonzee had a miserable morning and afternoon, until we placed her into her spa.  Our happy little bear returned.  She swam with her big siblings, Auntie A, and her dad, while baby brother took a bottle, and I took in the gallons of water being splashed out of the spa while attempting to try and take pictures.  After we all got out I signed into Facebook to post about the fun she had and instead what I opened was post after post asking for prayers for one of Sonzee's CDKL5 brother's family because he had passed away.  Immediately, my heart broke, and sharing the afternoon of smiles did not seem very appropriate.

I STRONGLY DISLIKE everything about life with CDKL5.  I HATE that my other children must grow up knowing and worrying about seizures, GJ tubes, surgeries, hospitals, therapies, a sick sister, medications, and everything else that CDKL5 has taught them.  I absolutely LOATHE parenting a child who has a CDKL5 mutation because I find it hard to believe there could be anything worse than watching your child suffer his/her entire life and knowing that you will eventually be burying them.  

There is no escape.  There is only the false sense of security brought to you by better days and healthy moments, along with the denial that it will not happen to your child, paired with the fact that they have already (somehow) made it out of the most unlikely situations a time or two before, so of course he/she always will.  It is the comfort in seizure alerts and oxygen/heart rate machines while he or she sleeps at night because naturally when you are alerted you "will be able to intervene".  The panic, the fear, the uncertainty, it never really was gone from any of our minds no matter that we did not post any messages asking for thoughts and prayers to a CDKL5 family, but now that we are settling into fall, so it begins again.

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Unexplainable joy

One of the greatest joys of being a parent is watching your child participate in something he/she loves and be able to express that love in an outward manner complete with giggles, a grin as wide as the width of his or her face, and an invisible aura that radiates from the soul.  If you are not a parent, I am sure you have at least experienced seeing a child engage in an activity that resulted in obvious happiness that it was contagious enough to enlighten your mood.  There are very few "life of a medically complex special needs parent" experiences that I feel I am lucky to experience, yet if you have never met a child who has difficulty outwardly expressing his or her emotions and then you witness him/her outwardly display joy, there is really little justice with words that can explain the affect it has.  It is one of those "you have to experience yourself" types of situations.

Over the past 3 years and 8 months there has not been one smile, peaceful or calm day, seizure free period, pain free time that has been taken for granted.  Every time our family is blessed with an obvious joyful day for Sonzee it is felt by everyone.  I personally can feel the happiness course through my blood and down to my bones.  It brings chills and tears to my eyes.  I have to fight the tears the same way I do when I am overwhelmed by negative emotions.  It is as if my brain does not know how to correctly process the information, I go into system overload.

I am sitting here tonight re watching the videos and pictures I have taken over the past 3 days of Sonzee in her Make-A-Wish spa and the tears are hard to hold back.  So many emotions wash over me.  Besides the obvious momentary bliss and joy being in the water brings to her, it is validation, we did it...we understand her...we did something right...we have not completely failed her...we can help her be happy.  I will not ever be able to adequately express how much of a positive impact this 2400-gallon rectangle of water has brought to this house, our family, and our little bear.  We will forever be grateful to Make-A-Wish and everyone in Arizona who made this possible.  This momma might actually get some sound sleep for the first time in 3 years and 8 months...

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weight

It is midnight.

My eyelids are beyond heavy and my eyes are blurry and dry, but as usual I am awake to welcome in the new day as the date changes on my watch.  My stomach feels a bit off and it is not any sort of stomach bug or illness.  My mind is a thought away from sending my eyes a memo that a flood is incoming and my chest a second away from skipping a beat.  I have been hitting refresh on one of Sonzee's CDKL5 sister's mom's Facebook page.  I hate this game.

Waiting is the worst part.  I try to tell myself no news is good news, it is the truth, right?  After all, it has been 10 hours since she last posted, and every other tag of her name on her profile page is her original post tagged, so I am sticking with my original thought.  The alternative is just too much.  I have lost count of how many of our CDKL5 siblings have been lost this year and it makes my heart feel excruciatingly heavy.

Today is one of those days that makes CDKL5 feel suffocating and inescapable.  I replay in my mind and on my camera images of Sonzee smiling in her spa during her first swim.  While the images bring me immense joy, the reality behind why there is an aquatic training vessel in my backyard and the organization that gifted it to us, paired with her CDKL5 sister in the ICU makes me want to run towards the trash can and then afterward partake in some ugly crying.  There are certainly times that the weight of this life is just beyond any earthly comprehension and I can tell you 12:40am is one of those times...

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Light

One of the most important lessons I have learned while being part of Sonya's story is that moment to moment everything can change and without warning.  One minute we were celebrating seizure freedom and the next we had the seizure tracker app opened and the timer ticking by.  One minute we were trying to give her a little taste of ice cream or frosting and the next we were changing her clothing and cleaning up the mess brought on by a miniscule amount of food.  One minute we were relishing the fact that she was able to roll from side to tummy, and the next we had to worry about potential bone she could be fracturing.  Trying to keep the imaginary see-saw of positive and less desirable balanced is a skill we have not yet mastered, yet we continually strive for.

As we near on two weeks since our 10 days in the hospital I am slowly coming closer to crawling out of the hole I fell into.  Every day home is another day our family gets to rebuild.  It is another day we can make memories together and another day we can attempt to celebrate the successes, whether big or small for each specific moment that occurs.  The further we get from day #1 of admission is another day to reflect on something potentially positive that is happening, which is honestly a daily struggle for me, but I do try.  I have to constantly fight within my mind to focus on happy thoughts and push away the ones that ultimately bring on fear, panic, and anxiety.  Then the rain came this past week to Phoenix.

Heavy downpours came from the sky, roads were flooded, debris was scattered into the streets and then just as fast as the storms came in, they passed.  They left behind floods in some areas, but overall, the sun came out and light blue sky returned along with 65-70-degree weather.  Then today, Sonzee smiled.  The breeze hit her face as I placed her into her wheelchair while I took her out of the house for her first activity since September 16 and our little bear smiled.  She smiled throughout the entire 2 hours she was with her (best) buddy Emma and she smiled when she came home.  Today was just another reminder that the storms will undoubtedly be back, but the image of her quirky little grin while holding her pacifier in her mouth will make the next one a little more bearable.

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Recovery

It has been one week and a day and a half since we have been back home.  It seems that every time this chapter repeats, the recovery is always different and becomes more difficult.  I wish I knew why.  Maybe because the reasons behind the initial admission are rarely ever the same.  Maybe it is because the situation, and life surrounded with the complexities of CDKL5 in general effects every family member in a different way.  Maybe it is just because we are all exhausted from everything that is constantly thrown our way.  I can throw out my guesses from now until I am blue in the face, but odds are the reason will just be added to my never ending list of things I won't ever understand and lengthy list of "we won't ever know why".

These situations literally drain the life out of my body and take me weeks, really months, to truthfully be back to okay, or whatever okay has even become over the last 3 years and 7.5 months.  It is usually just enough time for another floor to be pulled out from under us so we can start sliding down into the dark CDKL5 abyss.  This past week after my rock bottom moment Sam reminded me that if I am feeling overwhelmed then odds are everyone in the house is feeling it too because this life is not normal.  It is true, nothing about any of the situations we find ourselves in when it comes to Sonzee and her life is normal.  None of them are fair and none of them do or ever will make any semblance of sense.

Yet here we are again playing the same game but with different specifics.  The all too familiar chaos that unearths another consideration, another complication, another source of suffering for Sonzee, and another bout of muddy clarity for the rest of us.  I wish I really knew what all of these hospitalizations and inconsistent crazy home life was doing for Sonzee's siblings.  I wish I really knew and was able to truly understand what Sonzee's perspective and overall desires over everything were.  Are we still making the correct decisions and are they the ones she really wants?  Most importantly, will we ever truly know the truth to that last one and what would we do if she disagreed?

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Hollow

It's Monday night and I am finding myself in a situation I know all too well.  Around 3:30pm they transferred her from our past weeks residence of 8118 to PEMU room 8138, to get a behind the scenes look at her seizures.  I have now spent the past 4 hours hitting buttons and documenting potential activity.  The familiarity and absurdity of this life rerun catches me after the last button pressing.  She has been whimpering for 20 minutes now, almost an ironclad confirmation that the reason I hit the button was validated, I will know for certain in 12-14 hours.  As I look into her blue/green eyes they taunt me; that was stupidly the wish I made the whole time I was pregnant, "please let me have another blueish eyed baby".  I see the glossiness in her eyes as she whimpers and the emotions build behind mine. 

I don't understand.  I really do not think I ever will.  Why her?  Why me? Why us?  We should be home with her siblings, with Sam, in our house.  I should not have to be here alone during another holiday.  It hasn't even felt like one to be honest.  Since Saturday I have read more than 500 pages of a book I never would have considered opening, finished 5 magazines from cover to cover, timed airplanes taking off and landing, and studied the arrival and departure of cars from every parking lot that is within my view.  This is not my first time completing the tasks that I just listed.  In fact, I am pretty sure I have resided in each of these rooms at least one other time over the last 3.5 years and have partaken in other meaningless time eating activities.  At least I got the rooms with the bed.

My heart hurts for Sonzee in so many ways.  Another specialist now added to her list, more diagnoses added to her already lengthy compilation, and more pain.  Always pain.  Why couldn't her CDKL5 mutation give a lifetime of laughter and trouble with being too happy?  Why couldn't she just not have a CDKL5 mutation to start?  Instead we have nights of pressing buttons that result in more taunting alarms that are triggers in and of themselves, taking me back to the very first stay when she was only 4 weeks old.  I can still picture everything about that stay, as I stared at her image on the screen in the video I even saw her look the ages she has at each PEMU hospitalization, these wounds won't ever heal.  The room itself is taunting as it gives us new information but rehashes the old. 

A CDKL5 mutation for her is the gift that keeps on giving...or rather really doesn't give anything appropriate in order for her to be pain free and content.  When I think she has hit rock bottom I quickly learn there was so much further she could go, because she has hit it now.  That is until the next byproduct of having a CDKL5 mutation comes sneaking out from the depths.


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Thought but never said...

I should be folding the massive amounts of clean laundry sitting in the hampers; besides seeing the other kiddos, that was my 2nd reason for allowing Sam to switch "night duty with Sonzee" for tonight.  I have somehow managed to order two Shutterfly books, one 16 x 20 canvas of our most recent family photo shoot, made and stored the baby his food, ate some amazing dinner brought to us by our longest Phoenix friends (and amazing cook), answered a lot of texts, watched our 2nd oldest yank out another tooth (gross, it is always so gross) but still have not folded the dang laundry.  Instead an earlier text conversation is repeating itself in my mind.

"It must be so incredibly hard to watch your child go through this..."

The replies I wrote and erased:

Watching her seize I am honestly used to, except on occasions.

I am used to it all.

Eh, she has been in pain for so long, it doesn't even phase us anymore.

I settled with:

"It sucks :-("

I debated sugar coating my reply.  That is usually my " go to".  I try to pretend.  I do not know why, who am I actually fooling?  I settled on the middle ground, with a quick and succinct reply of "It sucks...(semi cushioned) with the sad face".  It is the truth, it does suck, and the sad face is how I have felt the majority of the time when it comes to all things Sonzee.  The reality is this is so incredibly hard.  In fact it is so beyond incredibly hard there really are no words to do any of the feelings justice, and unless you are a parent of a child with CDKL5 or some other disability or genetic mutation that results in a nonverbal child along with every potential pitfall that could possibly occur in life, then there really is nothing comparable to offer the situation to.  

I cannot even find a way to express the extreme guilt, sadness, anger, and broken heartedness I have felt since Sunday.  Before now I could not really imagine feeling worse than I already have over the past 3.5 years of her life.  These last 30ish hours have brought on an entirely new level of all of my feelings.  More than 5 people today reached out to me concerned they were the ones who potentially hurt Sonzee, they are not even related to her, so I can assure you telling me any similar phrase to "Do not be hard on yourself", is never going to make a difference.  I am her mom, I should be able to know what, how, or if ever, (and g-d forbid) who is hurting her.  The depressing reality is, I DON'T AND I REALLY DO NOT THINK I EVER WILL.

This feels like the heaviest blanket of extreme parenting failure there ever could be.  In addition is the paralyzing fear of wondering what if we cannot find an actual fix? Not a band aid, but an actual useful, ongoing, actual real permanent fix?  What if she keeps getting hurt?  What if we wait too long to bring her in?  What if we keep causing her to suffer more and more?  Doesn't she suffer enough as it is?  

So if you ever find yourself thinking "It must be so incredibly hard to watch your child go through this..." the brutal honest answer is that it is something I wish and pray for with every ounce of my being that you never have to ever learn about, think about, imagine, or experience, because no parent should ever have to experience this form of parenting and from the bottom of my heart to every parent who does..."It sucks :-(". 

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