Life isn't...

I can't seem to shake the words Sonzee's GI doctor said to us during one of our visits over the past year when we were debating putting her on gut rest.  The words keep taunting me, popping up during every diaper change, every time we put the thermometer into her ear, every time we pick her up and carry her, during every transition, every time we get her dressed, and really every time she moves.  During and for at least 1-5 minutes after each and every one of those previously mentioned activities she screams out loud and cries hysterically while her body trembles and shakes. 

"I don't know if it will help, because her body will find something else to interpret as pain".

I keep telling myself but for two weeks she was perfectly happy.  It was only after we did the infusion for her bones that the proverbial avalanche started.  The one that we still cannot seem to get to the bottom of.  Was it just a trigger?  Will the pain eventually dissipate?  Did we just divert the pain but not really solve anything?  Is this just a small bump in the road on the path to recovery, or is this going to be her new norm?  Did we not only lose the happy bear we were so beyond excited to meet and get to know but instead make things worse for her?  Did we just spend 22 days inpatient for nothing?  Did we introduce a vessel of potential bacteria that could kill her for nothing? 

How much longer will this last?  Why does every good intention end with a huge lump in the back of my throat and tears in my eyes?  Why does she always have to suffer at our expense?  I want to just fall to my knees and scream, we are just trying to help her, WHY??? why is it another thing?! Why can't she be given a break?!?  Just once I would like a decision we make on her behalf to actually help her and not cause a secondary backlash.  Was it the solution to the gut pain?  Was this going to occur despite the "GI pain distraction/elimination" no matter when we did the bone infusion? If not the bone infusion would it have been something else? 

Sadly, I have played this game before.  We have been here so many times I only wish I was numb to it.  I know that we won't ever receive any answers to any of the above questions.  We will simply have to let time give us some cryptic answer that won't be straightforward and will likely only come from us having to make another educated guess.  Life isn't always perfect.  Life isn't always easy, and life certainly does not always make sense.

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If only

It was "one of those days" yesterday.  Sonzee's seizures were nonstop, she cried when she wasn't having them, she slept after she had them, she was in visible pain when she was awake, and she was having a very difficult GI day.  All in all, by 5pm I was trying (unsuccessfully) not to cry by my desk and by 6:30pm I was officially over the day.  I managed to get myself under some sort of calm by adding makeup into my shopping cart and posting an epilepsy awareness post; at least the latter makes me feel like I am doing something to help.

It does not feel like it has been that long since I have been in this position.  The one where everything between the last melt down and the one on the horizon becomes too much for me to keep bottled up and eventually I turn into a New Years champagne bottle being opened.  I know this is all just part of the repetitive cycle that comes with the situation, but I hate when it gets to this point.  Within the next 24 hours I will no longer be able to hold in the tears; it is ok, it is time for them to come anyway.  By Thanksgiving I will have be able to smack a smile on my face and almost feel the same behind the scenes, and by next Sunday I will have pulled myself back together to face the next unknown period of time.

If only this was not the reality.  If only things could be easier for her and I did not have to watch her suffer so often.  If only there was a magic potion that could be created to completely fix the damage that has been created and will continue to be by her mutated CDKL5 gene.  If only I could close my eyes, go to sleep, and wake up to a Sonzee who was born with a complete CDKL5 gene.  If only prayers such as the ones I have relied on for the past 3 years 9 months and 8 days could actually come true.  If only. 

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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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Firsts

Yesterday was Sonzee's first day of the 2018-2019 school year.  Since she does not wear a uniform she of course was wearing an adorable "first day of school" outfit, complete with a rhinestone centered hair bow.  She took her first day of school picture in front of the chalkboard wall in the playroom and when it came time, she was escorted by an entourage into her classroom.  Since she attends school with her same at home nurses, I am left with little to no anxiety about the process.  We found her cubby, placed her items inside, explained to her teacher the stationary note I will send to school daily to keep her updated on how things were after the previous school day and the current morning before school, gave Sonzee a kiss, and off we went.

I walked down Utah Dr (which is the street in her building that her classroom is on) while I saw and heard the sounds of a more "typical" drop off experience.  Children sad to see their family members leaving, parents quickly running out in hopes that it would make it easier for the distraction to begin so their child would calm down, and me too preoccupied to give anything a second thought, while trying to hurdle the other kids I had with me out of the building so we could get to our next checklist item.

Due to every school day this week being a half day, a mere 2 hours and 45 min later, with the entourage in tow, we went excitedly to hear all about Sonzee's first day.  Maybe it was because of how wonderful things were last year during school, I did not give any thought to the possibility that her day would or could go any other way besides perfect for her.  I honestly do not know why with all of discomfort, cries, and pain she has been experiencing at home, I assumed that being away from home and back in school would make her magically better.  I do not know why I was taken off guard when her nurse told me how miserable she was and how she wishes something would work for her because she cannot spend her days like this.  I know all of this.  We have been living it all summer.  We have lived this so many times before.  

Last night as I sat thinking about Sonzee's first day of school I was brought back to a position of frustration.  Frustration that yet again, another first for her has to be tainted.  Frustration that another day for her was spent in pain and that we are failing her by having no answers or giving her any relief.  Frustration that this has become our normal.  Frustration that whatever band aid we do provide will likely result in more pain in a different way.   There is not winning and no matter how much normalcy we attempt to provide for her, it is nearly impossible for her to just experience a first. 

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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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Pieces

I am always in awe of how the brain works.  I never really appreciated parts of its inner workings until watching a baby have frequent seizures.  I honestly "forgot" some of the emotions and thoughts that I used to have when things were the way they are now, and when they were worse.  I am not sure "forgot" is the most appropriate term, more like I didn't realize how much protection your brain can offer to you as a shield of sorts.  It wasn't until yesterday afternoon when I was subcontiously avoiding putting Sonzee down for her afternoon nap that my feelings of fear and anguish triggered the distant memories of familiarity that overcame me.  I had forgotten how much I used to dread putting her to sleep knowing that as soon as her brain was in a deep sleep the seizures would start...and here we are again.

There is something to be said for how the comfort of a familiar situation and the travesty of what that situation is interwine within one another.  The comfort of knowing that she is sure to have a seizure once her eyes close mixed with the fear of the certainty that she will actually have a seizure as soon as she is asleep, it is insane.  How are we already back in this situation?  How did her honeymoon already run its course?  How come she never even had the chance to gain any skills?  Why so soon?  I shouldn't be sitting here with wine in a tumbler and tears in my eyes while staring at her monitor praying that she won't be woken up to another seizure since she is sleeping off the one that occured an hour ago.

I honestly never thought she would ever have a honeymoon period.  A year ago things went from bad to worse so quickly that I never entertained she would actually get a break.  After her 8 weeks of high dose steroids she went through many periods where she would not have a seizure for a couple of weeks, never long enough for me to get comfortable...they always returned.  Then in August we started her on Sabril and immediately after her first dose it was as if a miracle had occured.  She spent exactly 33 days and 2 minutes seizure free.  33 days and 2 minutes we never expected but completely appreciated.  After a small medication adjustment she went another 23 days 23 hours and 59 minutes, then 53 days and 13 minutes. I foolishly started to think that maybe some sort of control was within our reach, that we had found her magic concoction and given her an actual chance against her own body.  Then after another 28 days 23 hours and 43 minutes the bulk days of freedom came to an end.  I am so appreciative and grateful that she has had a combined 138 days and 55 minutes since August 19, there are so many of her CDKL5 siblings that have't been afforded this blessing, but my heart is broken into an indescribable number of pieces right now.

I had so many visions and dreams of how much she would achieve when...if she was ever given the opportunity to be seizure free, but none of it happened.  I have always known that seizures were just a result of a CDKL5 mutation, that even without them her development wouldn't be typical, but the realization of what her specific mutation limitations are has hit me like a huge semi truck this week.  This is definitely another valley on this journey....I just didn't realize a week ago that we were at one of the highest peaks.

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Battles

It is Monday afternoon and I am exhausted.  It was yet again another sleepless night with little bear and her constant screams of pain.  It is beyond frustrating that whatever remedy we find for her works only temporarily.  Her GI doctor has called in another antibiotic that helps with balancing out the bacteria in her gut and her palliative care doctor has told us to go ahead and increase her Gabapentin for the pain.  The GI and neurological systems are so tightly woven that in Sonzee's case the slightest bit of GI movement sends her nerve endings into a tizzy.  I was so naive to think that if we could only control her seizures that her life would be smoother sailing.

Her life is a series of battles.  Every time I think we have tackled one successfully, another one begins.  There is no time to celebrate and there is nothing it seems that we can do to prevent them from happening.  All of these battles keep continuing back to back and we are running out of supplies, I am running out of energy, and my sanity is on the verge of nonexistence having to listen to screaming and crying for hours on end each day.  It is taxing to keep living like this.  I honestly do not know how little bear does it, how do any of these children do it?

I remember when seizures were our biggest fear and threat.  When I thought nothing could possibly be worse than watching her have multiple ones a day.  I was wrong.  What is worse than watching her have constant seizures is having her be miserable screaming in pain for the majority of the day and night.  It is far worse having her cry and me not being able to do anything for her but just listen.  I cannot fix this.  I won't ever be able to fix this.  All of these battles, and there is no chance of ever winning the war.


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