29 weeks and 1 day

Dear Sonzee, 

I am having one of those periods where I feel like I am being consumed by my missing you.  It's the time where the tears aren't far from falling or just fall on their own and it is more difficult to swallow them and pretend like I am not actually a bereaved mother.  I actually commented in one of the "special needs moms" groups I have been unable to leave but typically have on mute and I wrote about you had given me a plethora of experience in the area the poster had stated but that you had died.  It was met with a fellow bereaved mother who buried her little girl, also at the age of 4 just shy of turning 5...12 years ago.  She also had seizures.  I went out of my comfort zone and sent her a private message.  I supposed you are bringing her into my life for a reason, so I will embrace it.

Last week a few of "my kiddos" at work received some of your items we had just sitting around collecting dust.  I decided I am going to compile a book of pictures of everyone who is able to benefit from your things, I just decided as I am writing this that I will call it "Sonzee's Stuff".  It will be another one of those double edged swords, but ultimately knowing we are able to help others keeps it possible.  I am working on a couple of other projects in your honor, and I am so proud of your story and the continued chapters that are still being written without your physical presence.  

I haven't made it "Facebook official" yet, but your brother is retiring in his red, white, and blue hockey team for a team with two different colors.  I am waiting for all of his gear to be ordered or for him to at least sport a team shirt beforehand.  I keep wondering what you would think about no more red hat or comfy red boots?  I mean lets be honest, you only used the boots as projectiles anyway, so maybe you wouldn't have minded to trade them in for a different pair?  I am nervous for the day it comes to fill out the extra items form because I always made sure you had your own set of items, and made your sisters share.  I won't need an additional blanket, an extra shirt, sweatshirt, or beanie just for you.  Crazy the things my mind tries to prepare itself for.

The finishing touches are almost all complete here at Bear Pines.  I think once the final picture is hung and the interior is complete I am just going to sit on the floor and cry.  It's just such an overwhelming feeling to know this entire house is based off of you and your essence.  Anyone who stays here and knows you will be able to pick up on all the little bits of Sonzee inspiration.  I might be setting myself up for disappointment, but I can imagine those who knew and loved you having to hold back a tear or two themselves when they walk through the door.  It's such a crazy thing to feel you here.  So much so I haven't physically been to your grave in over a week and I am doing okay.  (Auntie A and Uncle Mathias checked on you after the storm last week and Facetimed me while they were there, they appreciated your extra special breeze...and Auntie A was better prepared this time.)

I finally gave in and allowed your sisters to watch Descendants.  It was not at all what I anticipated, but to be honest I never even looked into what it actually was and thought it was meant for older kids. I am somehow forgetting the whole aging process and that if you should be 5.5 than your sisters can't still be.  It was a really good movie honestly, and so naturally it led me to listen to some of the music from all 3 movies, and so I will leave you with this.

And you can find me in the space between

Where two worlds come to meet

I'll never be out of reach

'Cause you're a part of me so you can find me in the space between

You'll never be alone

No matter where you go

We can meet in the space between

Love always, 
Ema 

Another 30 days

My new least favorite days have become the last one of the current month and the tomorrow that follows.  It represents another month that is finishing without Sonzee being here with us and the new one that is beginning without her to ever be part of.  Today marks the end of the 2nd full month of 2020 that she was not part of.  Tomorrow marks the start of the 3rd month that she never got to see.  On Sunday it will mark 3 full months, 90 days, 1/4 of an entire year that she was not here.  Just typing the words suck all the air out of my lungs and fills me with an immense amount of suffocating weight.

It seems unfathomable that the world has continued to go on without her presence. It is almost impossible for me to grasp that the laws of life even allow parents to outlive a child, how can such a situation be allowed to occur?  How is it that I have woken up every single day since February 4 and she hasn't?  How is it that she has been somewhere else being taken care of by someone other than her parents, other than me, for yet again another 30 days?

Today marks the 30th day of April where there were was not one single picture of her taken.  Tomorrow will begin another month on the calendar that in the future won't be able to provide any throwbacks during the year 2020.  I wish the milestones that occurred after death could be celebratory instead of overshadowed with harsh realities.  I wish I could say that the closing out of April taught me something more than the knowledge that it is possible to continue to live without her.  I wish I could say that May will teach me something different, but it won't.  It will just be another 31 days of survival.

When life gives you lemons

When Sonzee was only 10.5 months I wrote a blog post about lemons.  As I read it now I know it was one of those posts that I wrote to try to boost my morale and attempt to be positive.  So much has happened since that blog post, yet there is still the same passionate desire for "her life [to] be easier, less painful, less scary, and less dependent."  I cannot say that these past 3.5 years have brought any of those things, but it certainly was not for the lack of trying.  I know we have made every decision for her based on our desire for her to achieve her best quality of life possible.  I will always wonder if she feels we have been successful or if she wishes we made different choices.  

Last night one of her sisters was at a class at the mall and while I waited I was able to walk around a little.  I have been meaning to get the initial bracelet for her baby brother because my best friend started the tradition when our oldest was born when she sent me the "L".  So when I saw the Alex and Ani store, I walked inside.  After picking up the letter "N", I was taking a look around.  These last few weeks we have been bearing an extremely heavy weight on our shoulders and I wanted to see if anything spoke to me, so when I saw the lemon, my only decision was necklace or bracelet.

I wish I knew what you're supposed to do "when life gives you lemons" because Sam and I don't always agree.  We have tried shelving them, squeezing them, making lemonade, freezing them, throwing them, making margaritas and every other possible alcoholic beverage with them.  Nothing seems to be fulfilling, nothing seems to make me feel like we have done anything correctly, nothing seems to make sense, and nothing seems to have made a damn bit of difference for everything we have done for Sonzee.  The only thing I can say is that we have been doing our absolute best and no matter where this journey goes, there won't ever be regrets.  

So every day I put this necklace around my neck I will remind myself that when life gave us lemons we did everything we could with the information that was given to us, with the support of those who have shared in the ups and downs of this roller coaster ride of a journey, and that really was the best we could do, no matter how short-changed or inadequate it might have felt.

I knew

I knew the day would come.  I thought about it numerous times during her first year of life.  I wondered when exactly the moment would happen, how it would occur, the situation I would find myself in.  I never had a clear image of what exactly would transpire, but I knew after so many encounters that one-day things would be vastly different. I knew there would come a day when the small talk surrounding a run in encounter with a "baby" in a stroller would yield a different response than "how cute", "oh, is she 1?", "what's her name?", "she is so pretty", "what pretty eyes", and/or some other similar but positive and smile exchanging encounter.  I wondered at what point it would occur, always fearful of the day it would happen, but then of course forgetting about the potential on the day that it did.

After all the years of hesitant exchanges standing next to her stroller, eager to just smile along and chuckle at whatever praising remark was made, the one time that I forgot it could occur, is of course when it did.  I knew she wouldn't be a baby forever, I knew she wouldn't be tiny forever, G-d knows she has enough tubes and medical interventions erasing the Failure to Thrive diagnosis as we speak.  I was never naive enough to think that she would always get positive head turns, but in the end, maybe I was.  I knew once she was bigger she would get noticed for her hand stereotypies and her abnormal flexibility.  I knew people would start to realize she wasn't a baby, but in the majority of ways, she really still is, and ironically the phrase "look at the pretty baby" that used to make me grit my teeth because she wasn't a baby, I wish would return.

I knew her growing up would eventually happen, but I didn't expect for the day to occur while walking down 68th Street in New York City.  I knew one day someone would act in a way that hurt me to my core, but I didn't expect it to be a man walking a cute Yorkie named PJ, who (I can only assume) had zero intention to break a mother's heart while he was out walking his friendly dog.  I knew one day it would be completely obvious that the little girl in the stroller with splatter colored framed glasses and a customized pacifier clip was not actually a baby, but I didn't expect the silence after responding to the question about her age to be so deafening and feel like an eternity was passing by.  I knew one day there would be no words to fill the awkwardness that filled the air.  Yet the thing about preparing for the future with a diagnosis like CDKL5 is that there really is no way you can, because no matter how many dress rehearsals you have; when the curtains lift and you find yourself center stage, it is never exactly how you anticipated it to occur.

CDKL5 Awareness Day 2019

2015 was the very first year that today became "a day" in our house.  The very first June 17 we all wore CDKL5 shirts and we hung balloons on the CDKL5 awareness yard sign that was placed at the edge of our yard.  We had only known what life with CDKL5 was for technically 4 months and 6 days but really only for the previous 7 weeks after we first learned that CDKL5 WAS the reason behind Sonzee's lack of eye contact, her lack of ability to hold up her head, her lack of ability to give a social smile or to roll, and the reason why she was constantly seizing.  Since that very first June 17 I have always struggled with this day, staring at a blank blog screen but eventually figuring out the best way for me to give homage to a day I rather not know exists.

My biggest struggle with this day is that my brain is conflicted on what the purpose of this day should be.  I wonder if I am supposed to give a little more insight into what exactly life with CDKL5 really is.  I wonder if I should share statistics of the prevalence of CDKL5.  Then I wonder if it is better for me to not say too much, after all, there is surely a newly pregnant friend of mine scrolling through facebook who certainly does not want to know that such a life like this does exist and could happen to them.  I wonder how much I should share as far as how much Sonzee struggles or post one of her seizure videos that inevitably gets cut off at the 10-minute video mark because that is all the seizure tracker app allows.  I wonder if any part of this actually makes a difference to anyone who is not living this life and if so what type?

Bringing awareness to CDKL5 doesn't help prevent the diagnosis occurring to the projected 2 currently undiagnosed families wondering why their child is experiencing seizures, delays, and or difficulties each week.  It doesn't change the fact that based on the projected rate of incidence there are thought to be 30,000 individuals living with CDKL5, with the "official" diagnosed count between 2,000-3,000.  Knowing about CDKL5 does not change that 1:40,000-60,000 births will result in a new baby joining the family. 

Wearing lime green, a CDKL5 child's "team" shirt or some article of clothing with CDKL5 most likely won't bring about questions or do much to strangers walking by, yet all of us families essentially beg others to do so for us.  When you stumble across one of those requests you might continue to scroll by, thankfully it does not really apply to you, and luckily you dodged this really awful bullet.

As I sort through my emotions about awareness and balance out the ups and downs of this roller coaster of a journey, I am left with the feelings of respect and honor.  Today is a day that some of us will always love to hate and or hate to love, but regardless of which, we will shout about CDKL5 from the rooftops to anyone who says even one word to us.  It is a day to simply be aware of all that those of us with a child diagnosed with a CDKL5 diagnosis have lost but simultaneously gained.  It is 24 hours devoted to so many people coming together due to an unfortunate common bond as we try to do something, anything, whatever it is we can to try and make our children's lives the best they can possibly be.  And so to that I say, please help us spread awareness of CDKL5.  Please help us get our stories heard so we can continue research efforts to maybe one day, hopefully during our children's lives, bring about some sort of permanent formal seizure control, and or some type of way for them to make-up all the milestones that they continue to miss.  If for no other reason, please help support us on our journey as we simply parent children who could have very easily been yours.

Butterfly Effect

While I don't regret any decision that we have made for Sonzee, I do often wonder how a different one could have maybe, possibly, affected her presentation with CDKL5.  Deep down I know that really the impact of severity lies mainly in how the mutation itself blends within her body, but it doesn't stop me wondering about "what if".  The challenge I have with "what if" is far back do I go?  Where exactly does my one small change begin? 

While the obvious choice would seem to go back to around the time her mutation occurred, for this specific exercise it isn't the ideal choice.  I need her to have the mutation in order for me to let this alternative "choose your adventure" book to unfold.  With the intention clearly outlined I would go back to our headstrong desire to wean Topamax.  The drug that we understood only afterward was also referred to as "dope-a-max".  The drug that we also learned mid-wean in some children can actually keep the brain activity clear of hypsarrthymia.  The one diagnosis we prayed she would never receive because that would mean she fell victim to x-linked dominant infantile spasm syndrome-2.  That diagnosis was listed on the right side column of her genetic report that I had specifically asked her doctor if that meant she would have.  The one that her doctor replied to with, "I would like to think not", and yet, we knew she had at least 50% chance of developing due to the fact that CDKL5 is an early infantile epileptic encephalopathy-2. 

Had we never weaned Topamax would her EEG background never have developed into hypsarrythmia?  So many spirals down the rabbit hole came from that one diagnosis.  Would she have gained more skills vs the regression that we never noticed until we looked back on pictures of the skills we had forgotten she once acquired?  Alternatively, would she have never emerged from the fog that we didn't realize she was in due to that same drug? 

Even though it practically went hand in hand with the date of her last dose and when her background shifted, I suppose we could say she was bound to get hypsarrythmia regardless?  Maybe it wouldn't have mattered what we did because she was meant to be the 50% to keep the statistic what it is?  I really do not regret our decision to wean Topamax, we did the best we could with the information we had at the time, and I will chant that mantra for the rest of my life.  But I would definitely love to know if we would still have the same Sonzee and the same outcome of her EEG background with just having gone through a slightly different journey

Prepare

At night I tend to relax by scrolling mindlessly through facebook.  I do not understand why I have always been a magnet for seeing what feels like 50% of my feed being awareness/prayer warrior pages for children, yet I find it impossible to escape it.  Prior to Sonzee, I was hit hard in particular by three children who ended up passing away.  After Sonzee's diagnosis, I had to start to separate our reality from others, because it was honestly way too much to carry on my shoulders.  It is not that I care any less about the children being shared, but my heart and mind understand the situations in an entirely different manner now, and the words "I cannot imagine" have turned into "I get it" or "I soon will".  Even when the diagnoses do not align perfectly, the situations faced living with a child who has a life-limiting or terminal diagnosis overlap in some way, shape, or form.  It brings the feeling of suffocation to an entirely different level.

Last night two different posts popped up on my screen, back to back, neither giving me a chance to catch my breath.  Two little babies lost their battles with their respective medical complications.  Two families shattered into pieces.  The specifics of the situations different, the outcome the same.  My heart is left broken for them, and I do not have any first-hand experience with this yet.  No one goes into parenting volunteering for the position either, I wish I knew how those who are gifted the fate were chosen.  I wish (I am sure like anyone else) I knew what I could do to avoid it.  Rationally I know there is absolutely nothing, and I tell myself "it can happen to anyone", but we all know the odds, in this case, are more so in our favor.

So many stories I followed involved rare diagnoses, ironic that we are living out our own journey of rare.  It absolutely breaks my heart that so many of us are living rare.  It definitely makes it feel much less rare.  I have certainly learned that statistics really don't mean much once you become one.  I have also learned that you have to keep putting one foot in front of the other and just living each day as it comes because anything can happen.  Things can go from stable to critical in seconds. Things can bounce back to completely fine in a matter of minutes.  The curve balls keep being thrown, and the bat keeps having to be swung.  The rare life isn't so different than our life from before.  We still have no idea what is going to happen, how, when, or why...the only difference is that we can tell ourselves we get to prepare.

Best of your todays

From the time Sonzee was a little baby Sam has always said that my happiness directly correlates to how she is doing overall.  When we find ourselves in a time period where we are walking on "Sonzee eggshells" in terms of her response to whatever discomfort she is experiencing it is difficult for my attitude and overall demeanor to not be a mirror.  When she has a bad seizure day, a challenging GI day, or is just not up to much, the reflection in me is clear.  I have become a master at hiding my outward appearances, but a good portion of the time, I do not have the energy to shelve the reality.  On the flip side, when she is having a great day, you might as well call me Burt from Mary Poppins when he is doing the penguin dance.

As a parent its in our nature to want only what is best for our children.  We want them to first and foremost to be happy, once that occurs everything else seems to fall into place.  For those of you who think, wonder, or say "I can't imagine how you do it" when it comes to the situations we are faced with, it is beyond words for me to properly convey what it is like to constantly watch your child go through setback after setback when the starting point isn't even that great, to begin with.  Happiness is unfortunately not as simple as it seems to be with our typical children, and it is exhausting on many levels to try to make things even just tolerable for her. 

There are definitely moments throughout the day, albeit sometimes they flicker similar to that of a lightning bug, where a smile appears across her face.  Sometimes it is actually purposeful versus the ones that are simply a precursor for seizure activity.  Occasionally she will smirk in response to a statement made to her and it is actually voluntary.  There are times that catch us off guard with her reciprocal social participation.  It is during these times and moments that I feel like a charging battery.  Each little event gives me enough energy to continue pushing through.  It's in these little moments that everything is worth it.  Despite finishing our days on average with less of the positive it is in those sparks of positivity that fill my dreams of hope, and leave me saying to her "and may the best of your todays be the worst of your tomorrows".

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Adjustments

Every time Sonzee goes inpatient it always takes time for us all to readjust to being home.  The first day is usually filled with equal amounts of excitement and stress.  Excitement because of the obvious, and stress because life at home has been literally going with enough to get by and hospital life has had me missing so much of what has gone on at home that blending the two worlds usually results in the inevitable first night "Randi tantrum".  It is usually filled with everything a three year old would be giddy with excitement over witnessing, and everything a mother would be cringing her teeth over; but I would hate to disappoint either.

Overall I really do honor the motto "do not sweat the small stuff", but after coming back into real life pretty much all of the small stuff turns into insurmountable stuff; including but certainly not limited to items on the counter that have literally been sitting in the same spot for three weeks, laundry in the washing machine but the machine not turned on, and or toys sitting out or put in the wrong location.  I can feel the tension building up inside as 100 bags that have been accumulated from the hospital as if we went on a vacation and hit the gift shop spider web sit on the floor taunting me.  The kids are of course rambunctious and wanting to release their energy by either arguing with one another or playing with the least appropriate indoor toy.  I am exhausted and completely overwhelmed with everything, and then after walking by the filled but not running washing machine, or item sitting in the same spot, like a branch on a tree, I just snap.

They are certainly not my finest parenting/wife moments, and I hate that they happen, but sometimes Sonzee isn't the only fragile one in the house.  There are so many adjustments that come from each of her hospitalizations and it isn't like there is any easying into the situation.  It is like being thrown into the middle of the ocean where there are only sharks swimming around and you have watched a couple videos of people swimming but have never received any actual swimming lessons.  The fear of drowning, being eaten alive, or whatever else you haven't even considered is at the forefront of your mind.  You have no way of knowing the outcome or if the information you have learned will make any difference, all you can do is just close your eyes and pray you make it through.

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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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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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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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8 days

Our summer in NY comes to a close in just 8 short days.  I am wondering how some days feel so long but time continues to pass me by with record breaking speed.  By the end of this week Sonzee's oldest brother will have turned 7 years old and her youngest brother 8 months.  I would pray for time to stand still except for the fact that for the next 8 days I can confidently say that Sonzee will be uncomfortable and in some sort of pain, and so each day is one day closer to being able to address her needs in a more suitable environment.

I wish I could say that once we return home her issues will be remedied, but I am more realistic, and we have danced this dance a time or two.  In the recesses of my mind there is hope that our next solution will be successful, but it will not come without a hefty price tag of potential yet guaranteed challenges.  While Sam and I are finally on the same page, the pit in my stomach, weight on my chest, fear in my mind, and pain in my heart are all too much to handle. 

This summer as usual has provided the support I have needed to rest and recharge so I am able to tackle what inevitably lays ahead.  It has allowed me on a certain level to ignore life and choose what we want to focus on.  Being away has kept me from emailing doctors daily, kept us out of inpatient stays, and allowed us to provide some semblance of stability for Sonzee's siblings while keeping Sonzee as comfortable as best we could.  We have 8 more days to live in our version of fantasy, to go on our 3rd annual trip to Hershey Park that Sonzee's siblings have spent a year anticipating, and to continue creating family memories.  So while the next 8 days will be filled with bitter sweet moments we will do our best to highlight the sweet ones and overcome the bitter ones.


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"A cure"

This slide has been popping up all over my news feed from the CDKL5 conference this past weekend.  I do not know why specifically, but every time I see it pop up it sends my inner core into fight or flight and instant anxiety ensues.  I know that if I had been present and had all the information regarding the context of this slide I would most likely feel less threatened by such words, but as it stands, I just feel "vulnerable" to the potential of hope it should elicit.

After the 6th time I saw this image I turned to Sam and asked him why I was so angry over it.  It was and does give me such a strong negative feeling in the pit of my stomach, and I wish I could read it with the excitement of those who posted it.  I am unsure of the exact reasoning, but while trying to focus on a calming game of Sudoku, I couldn't squelch the numerous questions that came into my mind.  Firstly, is this really a cure for ALL of our children who have a CDKL5 mutation or will it only work for some?  Will Sonzee be alive in 2025?  Is it even possible to really cure a genetic mutation?  What would a cure actually look like?  Who presented this slide?  Does the presenter have a child with a CDKL5 mutation and if not, do they understand the weight that these words carry? and What really is the meaning behind the words on this slide?

It has, is, and always will be a challenge for me to truly embrace the words hope.  I wish I could say the word and actually believe in it.  I wish I could allow myself to be open to the idea of what hope represents, and allow myself to be vulnerable to every component.  I wish I was not so afraid, but that is really what it comes down to.  A bottom of the barrel, crippling, scary, dark, deeply rooted seed of fear that throws up this clear Plexiglas wall so that I can see what is on the other side, but am unable to be part of it.  I want to believe, I want to have hope, but I do not want to be hurt, I do not want to be crushed, and I do not want to be disappointed.  After all, this isn't about hoping for the sun to shine on a rainy day, this is about my 3 year old not suffering, potentially becoming a functioning member of society, and me not having to come to terms with the fact that I will most likely be burying her at some point in my life.

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Conference 2018

This weekend is the Biennial CDKL5 conference taking place in Denver, Colorado.  From the looks of my Facebook feed and the parent support page, the majority of our CDKL5 family will be present.  This is the second conference to take place since we have known of Sonzee's diagnosis and the second conference we will miss.  The obvious reason is because the weekend has coincided with our second weekend in New York both times, but if I am honest, the more psychological reasoning is a bit deeper in nature.

I would be lying if I said I wasn't a bit envious of everyone who is there.  A part of me that is sitting here in New York aching to meet all of my virtual family in person and to meet the children and siblings who went with their families.  There is a big part of me who would love Sonzee to be around children who are the most like her, just in case there are times she may feel like she is the "only one".  There is a piece of me wondering if I went if this would be the mom group that I would finally feel like I fit in most with.

Despite my envy of those at the conference, there is a significant portion of me that is not ready to be in the room with so many parents whose children also suffer from the effects of a CDKL5 deficiency.  I cannot physically see so many impacted children, in what would feel to me, a small confined space.  It breaks my heart that this is all of our reality, that such a debilitating deficiency exists.  I just will not ever understand and maybe avoidance is my way of dealing, because I realize more and more every day, I am still unable, incapable, and unwilling to fully accept the diagnosis. 

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More than seizures

Today marks day 4 of CDKL5 awareness month.  It is a month I have been lucky enough to honor over the 3 years of Sonzee's life.  The entire month brings similar feelings to that of her diagnosis day; a mixture of gratitude for having an answer to the "why", and pain because of everything that comes with the 5 characters that don't go away when awareness month ends.  Historically, I spend each day of this month trying to balance the positives and negatives that have come with this diagnosis, not wanting to highlight only the bad but trying to give the weight of these characters their due justice.  The truth is while the hallmark of CDKL5 is early onset, difficult to control seizures, CDKL5 is more than just seizures.

Two years ago yesterday Sonzee was finally discharged from a 28 day hospital stay.  It was a discharge we were not sure would occur, and the experience left us jolted to the core.  It was during that stay that it was clear she would most likely never tolerate feeds into her stomach again, 2 years later and those thoughts are pretty much confirmed.  She is still fighting the same battle and we still have yet to figure out how to help her.  That sadly seems to be a recurring theme, and it weighs heavily on me as a mother.  My job is to not allow her to suffer, and CDKL5 makes that nearly impossible on every level.

Sonzee is 3 years and 3.5 months old, yet our 6 month old moves circles around her, almost literally.  She cannot sit, she cannot crawl, nor can she walk.  I am able to say those words without tears now, and we focus on what makes her happy, but the facts still tug at my heart.  I wish for her that she was able to sit, that she was able to crawl so she could get to toys or places she wants, and that she was able to functionally use her hands to request hugs when she wants.  I wish for her that her voice was not locked inside her unable to communicate her basic wants and needs.

I do not need a month to remind me of everything that having a CDKL5 mutation has taken from Sonzee or our family.  I live the effects every hour of every day, and when this dreaded deficiency takes her earthly vessel from us, it will continue to wreak its havoc on those of us who have fallen in love with her over the years.  What this month simply does is allow me to reflect on the significance this string of characters has on Sonzee and every child impacted and share the weight so that I do not have to carry it alone.

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But then...

More times than I care to recount in the past 3 years I have made a "prayer request" post for one of our CDKL5 siblings or their family as they were in the hospital, on hospice, or already passed.  The topic no one wants to openly discuss but that every parent who has a child with CDKL5 tucks into the recesses of their mind.  Maybe we can rationalize that these posts are rare.  Maybe we can pretend that because there are much older children who are diagnosed with CDKL5, this won't "happen to us".  Maybe, because this time it wasn't us, we can pray for a multitude of reasons and go back to our reality.  Maybe when we wake up the post will have been a "false alarm" and we can all breathe a sigh of relief.

While there is a numbness that begins to creep into your body after making so many of these types of posts and losing so many of our beautiful children, there are always pieces of your heart that will never be put back together.  A portion that breaks because this child has been "adopted" into your family, and you have most likely been following his or her journey and witnessed his or her struggles and accomplishments along the way.  A portion that breaks because you have most likely stood in this position before with another family and you have an idea of how this is going to unfold and you know a parent is about to part of the group that you still cannot understand even exists and never want any part of.

While your heart is broken for this family, the reality is that your heart is also broken for yourself.  You cannot possibly imagine your child's journey following in the same manner, even if you could imagine it, you do not ever want to.  You cannot fathom how this family is going to make it through this, because it is incomprehensible how you would.  Other families will tell you that you cannot dwell on it, that you cannot live life fearful of this occurring, to an extent I think that is accurate, but then the reality sets in.

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Now

Yesterday was Sonzee's 5-year-old sister's birthday celebration.  It was a planned "girls only" party.  8 girls including the birthday girl were going to spend the morning getting their hair, nails, and makeup done.  My heart yearned for an inclusive experience for Sonzee.  I was apprehensive from the time of booking how this would play out, but I knew it was out of my hands.  I have learned to set the standards high for Sonzee, but to keep my expectations low to protect myself from the potential pain that comes with the "special needs life disappointment".  So, when we arrived at the facility and the girls began to rotate into their respective stations I continuously mentioned that we would try Sonzee, but that it was okay if it did not work out.  I yearned for her to take part without it being stressful for her, without her being upset, and without me wishing the outcome had turned out differently.  

Finally, it was her turn.  I was nervous about how the staffing girls doing hair, makeup, and nails would react to her continuous body movements.  It did require Sonzee's sister and myself to hold her hands and feet to get her nails done due to her kicking her feet around and her desire to want to eat her fingers throughout, but once she realized she was being pampered she settled right down and only got a little nail polish on her shorts and inner thigh.  She did not argue one time while the girl put gel in or combed her hair, or spent time doing a french braid side pony tail.  She loved the glitter shower at the end.  I helped make a beaded necklace with her, to be honest she was not overly thrilled (but those beads are tiny, and I honestly do not care for the patience it takes either).  She danced with her sister, and it brought me such an immense amount of joy watching her be included.  The staff included her, the girls included her, her sisters included her.  My heart was not prepared for the amazingness that occurred.

Lately things have not been the best.  We try to focus on the positive, but the weight of CDKL5 has been increasingly heavy over here.  There is the false sense of security because things have been going okay with the big picture, but the little things are what make the floor fall out from under us in an instant.  When will that happen?  The uncertainty of everything remains only a small thought away, and it takes a toll the further into this journey we travel.  It is easy to get caught up in that ball of yarn.  Yesterday while celebrating the past 5 amazing years I was reminded about happiness and joy.  I was reminded that life passes by in an instant and it will not be slowing down.  I was reminded about Sonzee-stones, simplicity, and the little things.  I was reminded that there is nothing I can do about the future, nothing I can do to fix the past, and that I need to be present in the now.

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Able

It is 1:29am, the house is quiet except for the washing machine and dryer that are spinning in the background, and my headphones playing music that takes me back to my high school and college years.  The lump in my throat keeps trying to bring itself to the surface and I feel the tears in my eyes trying to break free.  I am honestly not in the mood, so I will force a quick swallow and give a fast blink.   Sonzee's "obvious seizure" seizure freedom came to an end today.  As odd as this will sound, we are thankful.  She has not been herself with them gone.  She has spent the better part of the past week crying, whining, chewing her hands and vocalizing her discomforts.  Pain medication has been her only reprieve and we honestly have no idea what we have been treating.  With the return of a new type of seizure also brought her some much needed calmness, and me some much needed steps toward sanity.

There will never be any winning when it comes to this life of hers missing a healthy CDKL5 gene.  Seizures, no seizures, it all sucks.  I am unfazed by this portion of the journey at this point, completely used to it and out of the umph to convince myself that things will ever significantly change at this point.  I keep wondering how we ended up with this as our path to walk, trying not to question why we were the ones chosen to deal with what continues to feel an insurmountable challenge.  I keep wondering when our reprieve will come, when we will be thrown a bone, because it seems more challenges just continue to get sent our way.  It leaves me wondering what am I doing wrong?  What is it I still need to learn?

Tomorrow our middle girl turns five.  I often wonder what things would look like had we stopped having kids after we had her.  Where would our lives be?  How would her and her older brother and sister's lives look like.  It is hard to believe that had we never had Sonzee or her younger brother our youngest would be five years old.  Things would be vastly different.  While it would be easy to say that things could have been easier, that we would not have any challenges, I do not know if I truly believe that.  Having had Sonzee I have always wondered if she took on the task of a challenging life to spare something horrible happening to one of her siblings.

As the years have gone by.  As Sam and I have been given different experiences on our parenting journey some have been more difficult than others.  Each one has impacted us in different ways, and thankfully made us stronger individually and as a unit.  We do not have the answers, we have no idea where this path is leading, or what the story will look like at the end.  What I can say with certainty is that it definitely has not gotten easier, it most likely will not, but I suppose have been gaining the correct tools along the way and each time something new is thrown our way, we are getting better at handling it.  

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Handling it...

It has been a year and 3 days since this post was written.  I was around 2.5 months pregnant and too afraid to talk about it, for so many reasons.  I had lost the pregnancy before, we were debating on what, if any prenatal testing we would be doing, and I was so afraid of people who knew our situation with Sonzee judging our decision to have another child.  While the odds of having another child with CDKL5 are extremely rare, especially since neither Sam nor I have a mutated CDKL5 gene, we have 3 other children without a mutated CDKL5 gene, and because Sonzee's mutation is de novo, we were not really concerned that our next child would have the same mutation, but what about something else?  I distinctly remember carefully choosing the closing sentences of that post because I was trying to believe this to be the case.

I do believe everything will be the way it is meant to be, but no, I do not always feel things will always be fine.  I do however believe no matter what it is, you will be able to handle it.

 Here I sit a year and 3 days later wondering if I am "handling it".  Part of me feels like a completely unraveled ball of yarn.  I feel the lowest in my belief of "everything being fine", in having faith that this, our life, is what "is meant to be", and that I am actually able to handle everything being thrown my way.  I do not recall a point in my life that I have been so afraid of what new piece of information I will be given.  When everything "works itself out", will it be what my both my heart and brain want and need?  I do not feel special because I was "chosen to handle" the situations I have been given.  I know it takes a much higher level of person to feel blessed and chosen to be fighting certain battles, and to be honest, I am just not there. 



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