March 16, 2015

Since 2015 the month of March has always been a difficult one.  I am pretty sure over the 5 March's Sonzee lived she was hospitalized at least one week out of March every year, and the dates overlapped 3 or 4 of those times.  I dislike the month of March in general, but this afternoon into the evening my body started to feel different.  This is definitely one of those things that is hard to explain, but anyone who has experienced a trauma of some sort in their lives can most probably relate.  Something started to nag at me, I couldn't place it.  I was feeling extra anxious, extra weight in my chest, and while it makes zero sense when I start to get my antsy anxiety I drink a cup of coffee. (Don't worry, it is 10:45pm and I opted for decaf, and yes I know the caffeine isn't helpful for anxiety, now moving on).  I made one of my fancier concoctions of coffee and sat down at my computer knowing I was feeling something Sonzee-related, but not quite sure what. Then as I normally do when I am feeling on the edge, I went to google photos and typed the date, March 16.  I realized quickly why my body was on edge.

March 16, 2015.  The official date that life forever changed.  The first night I would spend staying up all night and into the next morning not sleeping while waiting in the Phoenix Children's Hospital ER.  The night that I decided on my own that I had to trust my gut, the gut everyone else was telling me was just being neurotic.  The first night I recorded a seizure, not even really certain that was what it was, but yet knowing in the recesses of my soul that was exactly what those movements were that Sonzee had been doing.  March 16, 2015, was the night I called the after-hours line for the pediatrician's office and flatly told them I would be taking Sonzee to the ER because she had her second seizure.  They told me to call an ambulance. I told them that felt excessive. Since Sam wasn't home I called my neighbor instead. March 16, 2015, we sat in the overflow area of the old PCH ER during cold and flu season, with a brand new baby who was unvaccinated.  I was panicking. March 16, 2015, was the night I didn't understand how a newborn baby seizing wasn't the highest priority child in the ER, the rest of her life would teach me that.  

It is amazing to me how the body remembers but the mind can move the memories to a hidden bookshelf. 7 years ago today, around this time exactly I took a maybe 7lb little baby to the hospital with a video of her shaking in tow not even thinking further than someone was going to confirm my suspicions, tell me she was seizing, and send us home.  I honestly to this day do not know what I thought was going to happen, but I didn't even pack a hospital bag, (rookie mistake). 7 years ago today I can still feel all the feelings I felt. 7 years ago today I can remember the sites and sounds of that ER.  7 years ago today I could tell you the words spoken to every nurse and doctor. 7 years ago today as she seized again I mentioned to the ER nurse how horrible it was to watch her seize and she responded with "you'll get used to it". 7 years ago today I wanted to punch her in the face, but never thought to ask her how she knew that.  7 years ago today and I know how much that statement is true, eventually, sadly, I did get used to seeing them, but I never got used to not wanting to cry watching her having them. 

March 16, 2015, a day that marked the beginning of a story that wouldn't last more than 4 years 11 months, and 23 days, but also the beginning of reliving the trauma of those 4 years 11 months, and 23 days for my forever. 

Scars

Just about every day of the week I find myself driving past Phoenix Children's Hospital.  I always take a moment to silently nod my head.  Occasionally quick flashbacks of one of the many times we lived in the hospital will pop into my mind.  More often than not I can shake them out of my mind and continue on with life.  Except for a week ago when a brother one of our oldest son's hockey teammates was diagnosed with cancer and despite it being a completely different journey, and a completely different world I am brought right back to our old life.  

As I drive by the hospital my mind now pauses and thinks about the family that now sits a floor below our old home creating their new home.  Thinking back to all the times I walked the halls and shared the elevators with others sporting a bright orange bracelet.  A sort of comradery in a world of chaos, but yet it is now a feeling of panic drowned with an extreme weight of grief.  My heart is broken for the familiarity in our parallel stories with the knowledge of similar feelings and experiences, yet distanced by the fact that our journeys will forever be different.  Fear of where their journey might lead them based on where ours went, hope that theirs will be different, and fighting to constantly remind myself this battle is no longer ours.

Time can forever pass, but the scars from the trauma will never fully heal.  They are sometimes hidden from the outside world, but can easily be freshly exposed.  It's a deep-rooted knowledge of what really goes on behind the room doors at 1919 E Thomas Road.  It is life once lived where everything was done to protect your child, but yet it feels impossible, and the world doesn't understand enough, yet some will try.  It is a fear of illness plaguing your house mixed with trying to balance the quality of life for every member of the family.  It is trying to wrestle with your darkest fears while keeping hope.  Hope that feels like it is taunting as it starts out strong and becomes quickly watered down and forever altered to have various meanings.  It is a constant state of fight or flight and an inability to talk yourself off the ledge.  

Life will always continue to move forward, but so will the scars. 

Sacrifice

Last night our middle daughter was calling for Sam at bedtime because she was waiting for him to read her a book.  I was getting Sonzee's TPN supplies put away, giving her meds, and getting her ready for bed.  I let our daughter know he would be there in a minute.  During the time she was waiting, the other two elders called for him as well.  It doesn't make me angry that this has become the norm, it just is how it is.  But the moment flashed a memory in my mind of a time, that seems to be from a completely different life, but was just a few years ago.

There used to be a time that bedtime took hours because each child chose a minimum of 2 books and both Sam and I took turns going from bedroom to bedroom.  There was tickle time, laughter, talking, and books.  There was "Emmmmaaaa" being called and I was the one who cuddled next to each of them and endured the 2-hour long ordeal.  Sam and I joked about the length of time it took but also felt it was so ridiculous....I think about it now and cock my head to the side as the word perspective flashes brightly in my mind.

Since February 11, 2015, bedtime routine has never been the same.  Children certainly adapt to the situations they are presented, but it comes at a cost, and the price in this situation was their ability to rely on my presence.  In the beginning, it was hard on all of us, then at some point during all the hospitalizations, it became their norm, but for me, remains a constant heartache.  Each night when they ask for that extra kiss from Sam, for him to read the book, or for him to come back in, it is a reminder of all the nights I haven't (and won't) be there, and for the sacrifices that come living the medically complex life.

The Nutcracker

When my oldest daughter turned three a tradition was started for her to attend the Nutcracker ballet.  When our 2nd daughter turned three, she joined in the tradition.  I debated for awhile what I would do when Sonzee turned three, would I take her as well? Afterall she did turn three, and that is the only rule.  Would she like it?  Could she see it?  Would the music be too loud or the lights too bright?  I had so many questions and thoughts running in my mind, but ultimately I called up the theatre and bought her a wheelchair accessible seat; Sonzee would be attending her first Nutcracker.

As I sit here, in room 8129, my heart is hurting, and for so many reasons.  The majority of the rooms at PCH have their green lights on ready to welcome their new occupant.  There are literally three nurses on the floor when typically there are six or seven.  Sunday nights are normally my nights at home, but for a couple of reasons that didn't occur.  I miss being home, I miss what I don't even know I am missing, and I miss normal. 

Ultimately tonight I am a mixture of sadness and anger.  I like to think that overall my attitude towards life with a medically complex child thanks to a mutation within a gene that occured during a "fluke", what should have been, routine situation, is pretty positive, upbeat, (sarcastic) and "go with the flow".  For the most part I ride with the waves, take what comes our way and always try to make lemonade out of lemons.  I have handled the fact that the majority of typical children milestones will not happen for Sonzee, im fact I let it go the majority of the time.  I try to let it slide that Sonzee should be in preschool at the same school her siblings and cousins go to and she should be on the playground during recess with both of her cousins, because she is in between both of them gradewise.  I deal with the fact that my other 4 children are acustomed to and seemingly okay with the fact that I am not there every morning before school, after they get home, or to give them a kiss goodnight.  Those things are okay.  They are just part of our normal.  But what I am having difficulty with is the fact that within our new normal accomodations are made, plans and schedules adjusted, there is room for "life happens", and yet today has come and what should have been her first time seeing the Nutcracker will instead be spent in room 8129 for the 20th night. 

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Restrictions

When we first came to the hospital at the beginning of December I was excited and a little surprised when they said the kids could still visit the room.  The past two weeks we have been enjoying the ability to have the kids see Sonzee whenever they pleased, for me to see the kids nearly daily, and for us to all have dinner together on occasion.  After a walk downstairs on Tuesday one of the main greeters told me she had bad news and she wanted me to know because she knows the kids come every day and she didn't want us to be surprised on Thursday.  

Visitor restrictions went into effect yesterday at 8pm.  For those unfamiliar with that term it means no children under the age of 12, including siblings can visit inpatient rooms, nor can they be in the main floor lobby (unless they themselves have an appointment).  What it means to many families in a similar situation is that the already challenging balance of making sure you were doing your best to keep the "family unit" a thing is now nearly impossible because you have to go outside to the round-a-bout to see your other children and they now cannot see their sister.  It is a safeguard and in all honesty I appreciate the limitation of exposure of all the illnesses floating around all of Phoenix, however, it does make an already difficult situation more depressing.

I was able to attend my older children's honor roll breakfast, spend the day with Sonzee's little brother today, and surprise the kids at school pickup.  Sam and I did our visitor restriction routine, and exchanged pleasantries and a quick hug in the round-a-bout knowing Sonzee was left unattended during that brief period.  We are used to this game, and honestly I think we have perfected our system, but gosh it really adds an extra dose of emotions.  Hoping we don't have to stay too much longer and can manage to stay out until restrictions are lifted in April/May.

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Rafting

10 years and 3.5 months ago while Sam and I were on our honeymoon we went white water rafting in New Zealand.  It was my first (and last) time ever setting foot inside an inflated flotation device holding onto a oar and wearing a life vest.  I remember the (short) training we underwent prior to getting in the raft and for some reason we were chosen (maybe Sam volunteered) to be in the front.  Sam was ecstatic, I was not.  Immediately after we began the course I felt completely unprepared, and I fully regretted the decision to accommodate his adventurous side.  About 5 minutes in after our first wall of water rolled over my head I was done.  I was scared to death, I had just swallowed water, I saw my life flash before my eyes, and I wanted nothing more than to get out of the raft.  I looked over at Sam who was having the time of his life and who at first didn't notice the tears streaming down my face because of all of the water; and then I told him "I want to get off", to which he replied "this isn't a ride Randi, you can't just get off".

These past 13 days I have been learning everything I never knew I wanted to know about a central line, and specifically a port.  The last time Sonzee was on TPN she had a PICC line and for some reason, maybe it was because she never went home with it, or because I knew much less, I do not remember it being as scary.  Every time I wake up throughout the night I check her cords and the needle.  In the morning I do the same and sit in bed with her, careful of the lines, but completely fine; by the afternoon when we do her daily CHG wipe down, change her clothing and sheets my brain remembers she is leaving the hospital with everything on her body, and by the time the new TPN/Lipids are brought into the room the panic begins to set in.  As soon as the bag starts to get primed my body goes into a full blown panic attack, and all I can think of is my experience on the raft and all I want to do is scream to the nurses to remove the port, tell her doctor to stop the TPN, and run out of the hospital.

I cannot stop thinking of every way these items could potentially kill her.  Changing the tubing connector leaves an unfiltered opening directly to her heart, bubbles not removed from the tubing appropriately can cause air to get into her vein, bacteria not cleaned from her skin or accidentally transferred from the tubing or the nurses, or myself can cause an infection and lead to sepsis.  What if all of this does not even help with her GI issues?  What if she just suffers from a potential consequence of the we have to try?  What if this ends up being the worst choice?  I remember our first consultation with her surgeon almost a year ago when he went through the lists of risks and then said "but just know, when it comes time and you make whatever decision you make, just remember that even if something happens it doesn't mean it was because of your decision".  Those words played in my mind so many times as we made our final decision to move forward, and maybe I even told myself they made sense, that they are rational words, and I believed them.  Yet, for some reason now that we are living this reality I already feel such a heavy weighted guilt over where this could potentially take her journey.

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Room 8129

We knew before we "checked in" that this was not going to be a short stay.  Generally speaking, her average length of stay is 7-10 days, and when we asked her doctor what the "usual length of stay was" for what we are doing, and she replied "a minimum of 10 days" we knew we might beat her 28 day stay.  We have never had that sort of knowledge in advance, so we did our best to mentally and logistically prepare.  It was not the ideal week to get started because of Chanukah, but it was when it worked with our team of doctors, so we obliged.  Our first week has gone by with just enough hiccups to feel we are right on track, yet I cannot answer the million-dollar question of "when are you going home?"

Hospitalizations have become part of our family "norm".  We have a sort of routine if you will.  The experience is sadly, yet comfortably, familiar.  The bigger kids get excited when there are no "contact precautions" and they can enjoy the playroom after school or get to watch whatever movie Sonzee has on in her room.  They handle it all in great stride and complain minimally in respect to their ages.  I know it has to be taxing on their minds and hearts, I see it written in the words on the dry erase door in the hospital room; "I hope you come out of this hospital soon", "I love you Sonzee", and heart and various shape drawings.  It stings for a split second and then it makes me smile.  

We have met a lot of new staff this stay but have seen a lot of friendly familiar faces walking the halls, popping in, and assisting with Sonzee's care.  I have bonded with mom's in the laundry area, we have shared the floor already with 2 other families we know, we got a room with the "bed", our window faces North, and the view is beautiful.  There is a constant mixture of feelings because of the situation and because of this journey in general, yet there is this feeling of community and sense of normalcy.  I suppose it is hard to understand unless you have ever lived this sort of life, and I am not wishing it on anyone, but considering other variables, there are worse things than living in room 8129.

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Avoidance

It's 10:15 on Sunday night and I am sitting by my desk at home.  It is the one night a week I allow myself to sleep at home when Sonzee goes inpatient, specifically because it is Sunday night.  Not much happens on a Sunday night at the hospital, so it is "safe" to let Sam stay.  I only sent one reminder text to have him make sure the nurses wore their masks when they changed the tubing on her central line, so I think I am doing well.  The washing machine and dryer are running their cycles, there are lullabies playing in the kids rooms, and everything is calm; except I have already stopped myself twice after I swore I heard Sonzee's seizure sounds and I felt my stomach fall. 

This happens every Sunday that she is inpatient and I sleep at home.  I don't understand why my mind cannot take even a few hours off.  Once I hear the sound, the panic fills my body and it takes so long for me to talk myself down.  My thoughts start to bounce all over the place.  I sent Sam a text and of course she's snoring away with some soft music playing in the background, calm as can be, so that should give me some comfort.  Yet I feel like it is never really about the "seizure sound" when she isn't around.

The "seizure sound" is merely a lightning bolt that matches the internal struggle of chaos I feel over every admission she undergoes.  Most probably because they are never straight forward simple admissions.  They are always weighted and involve "small" but really massive changes.  Her admissions are the times I am unable to ignore the medical complexities that are very much a part of her daily life.  I have no choice but to actually face reality when she is in the hospital, and I would much prefer to stick on my smile and say "she's okay", "she's Sonzee", or some other simple pacifying phrase.  I dislike the nagging panicky feeling that accompany the majority of the situations with her life, and I really dislike when there is no way to avoid dealing with them.

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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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Getting too comfortable

This past week I feel like I have been sucked into an uncertain realm of chaos.  The little control I thought I had over anything has vanished into thin air with such speed that I can feel its whiplash.  I have looked up at the sky about five times since last week convinced that my life is listed in the dramatic comedy section of G-d’s library.  My brain is overtired, I am physically and emotionally exhausted, fear of the unknown is debilitating, and I feel like my world is closing in on me.  Moments like these I wonder where things would be if we did not have the CDKL5 component.  How would I be different?  How would our life look? 

The way my brain functions these days I know has been significantly influenced by what I have been exposed to over the past 3 years.  I know I have reason to have the thoughts and fears I have, but that does not change the fact that I wish that were not the case.  I wonder if there was a study done on my brain in January of 2015, before the birth of Sonzee, and then now, how things might look different.  Surely the psychological effects of watching your child seize every day and face near death experiences must play a role with how your brain continues to function from that point forward. 

I know the events of last week sent me into this 100mph tailspin because they caught me completely off guard.  I bought a new hospital bag weeks ago after a parent in a local support group raved about a new backpack that comes with a charger and speakers among tons of storage pockets.  It was on sale at Walmart and I thought, “I have to have this even though we haven’t had a need for one, because the current bag I use has only two compartments”.  It came and sat in Sonzee’s room with the tags on every zipper. 

Last Monday Sonzee went to school, she had her typical day and had a seizure with her nurse.  All afternoon her nurse, Sam, and myself sat waiting in anticipation for her next seizure.  When it happened at 6:10pm, I said “oh, there we go Sonzee…we have been waiting for it”.  Never had one seizure resulted in the use of 911, or as much medication as we loaded her with, for it to stop.  We have used the same cocktail to help with a day when she has a ridiculous amount of seizures, but this was our first experience with a seizure not stopping on its own, and even after rescue meds.  I guess that is what I get for getting too comfortable.  I guess that is what I get for thinking, “why would I need to have the new bag packed?”

You would think that I would have learned in 3 years there is no such thing as “letting my guard down” or “getting comfortable”.  It is just not possible.  Things can easily change in a minute, seizures have quite a way of smacking me back into reality when I start to get content with what her "typical" is.  I now have her new hospital bag packed and ready to go in her bedroom.  I can bet the majority of the money we have that it will get used again.  It will be when I am least expecting and at the moment I have gathered enough strength to think “things are going so well, how could they possibly change?”

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Crying

Crying is not really my thing.  In fact, prior to Sonzee I am pretty certain there were maybe a handful of people who I allowed myself to cry in front of.  I like to be the strong person, the one who sort of (pretends to) hold(s) it together for others, the one who likes to stay in control.  Then came Sonze.  The girl who has changed so much about my world and the person formally known as "Randi".  I am not sure if or which version of myself I prefer over the other, but I really miss the me who did not cry as much.

There was a time after I became used to watching her seize that they stopped evoking any type of emotional response.  Yes, it is heart wrenching, yes, it is unbearable to watch, yes, it is absolutely tragic, but it is also part of our every day, and it is our typical.  I remember the days when she was a newborn and I would drive with my eyes staring at the rear view mirror waiting for her to seize so I could pull over.  I now honestly cannot remember the last time I watched for her to seize while driving.  There was a time when she was tiny and little that I would hold her in my lap while she was actively seizing and I would say to her "you are okay", and then one day it dawned on me that nothing about seizing is okay, so I stopped.  I used to get tears in my eyes at the sheer thought of a seizure coming on and then after some time it all just became matter of fact.  For the past couple of months, I became an expert at being able to watch her seize and carry on conversations, or just peak at her in her crib in the middle of the night and then go back into my bed knowing that her alarms will tell me if there is actually something I can do for her.  Maybe it was because I expected them to stop, maybe it was because I was in denial about their forceful return, but this week the tears are back.

I have said more times than I can count that we were warned about the dreaded "CDKL5 toddler years".  I thought I was mentally prepared, or maybe it I was just in some form of denial that it would not be so bad for Sonzee (I really should know better by now, she is Sonzee).  After all, we made it without an admission for anything other than tube replacement for 10.5 months, but then again, she just turned two.  I think a little grace period after she hit official toddler zone would have been nice.  She is only 6 weeks into her toddler years and already her seizures and GI system are becoming worse.  There does not seem to be a permanent fix for either of these, so I have a feeling I am just going to have to get used to crying.

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Same place different year

It is 10:45pm on March 20, 2017 and we are in room 8128.  We do not normally face north so this is a nice change of view for me, instead of watching the planes fly into Sky Harbor, I get to watch the cars drive on SR 51.  Since March 2015 during this exact week I have found myself surrounded by the same walls, in various identical rooms, and usually cared on by a friendly face.  With a stroke of luck, it just so happens that tonight we are with one of Sonzee's very first PEMU nurses.  One of the benefits of the experience is when the nurse coming to take you to your room opens the door and says "welcome back" and you see the same smiley face that has been there to wipe your tears in the past.  

There are so many adjectives that I have in my mind to describe being in this predicament; comical takes the lead, followed by unfortunate, nervous, weary, relieved, eager, and my list definitely goes on.  I foolishly started to think that we would slide right past this anniversary without celebrating in Sonzee style.  I suppose that is what I get for getting too overconfident, for thinking that things could actually take a positive spin for little bear.  This is the part that hurts me the very most.  I just cannot understand why my baby girl just cannot catch a break.  Every time I start to see a small glimmer of hope it just gets ripped away.  I really am having a huge challenge comprehending this reoccurring Groundhog Day type of testing.  Clearly something is not being done correctly or it would have stopped repeating already.

This is one of those parts of living the medically complex special needs type of life that makes you muster all that is inside you and push through because there is no other choice.  There is no other way to make it through these times without reminding yourself that there is clearly a reason for all this pain and anguish and it will one day be revealed...unfortunately it was not in 2015, 2016, or 2017...and in 2018 I will just buy Sonzee a cake and schedule an in-home party for the week of March 18.

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Lessons of a 28 day hospital stay

**Part of the November writing challenge for themighty.com which has been published here

Our daughter was diagnosed with a rare genetic disorder, CDKL5, when she was only 8 weeks old.  This was preceded by a weeklong NICU stay immediately after birth and seizures that were diagnosed when she was 4 weeks old.  We as a family have endured multiple tough moments during her 20 months of life so far, however, nothing was more eye opening than the lessons I learned after her 28 days in the hospital when she was 15 months old. 

She was solely breastfed from birth until we transitioned her to a bottle in order to receive a special diet for her seizures (ketogenic); whatever she was unable to eat by mouth we fed into her stomach directly via her g-tube.  No matter how much we tried to feed her, she was unable to keep anything down.  Finally I hit my breaking point and brought her to the ER.  When our daughter was admitted to the hospital, she was already marked as Failure to Thrive due to not gaining weight or growing at all from the time she was 6 months old.  It was a scary time not knowing if we would find and fix the problem.  The doctors could not tell us when they anticipated her to be discharged.  As the hours turned into days, and the days into the weeks, there was a cloud of darkness that haunted my brain, and I began to wonder, “Is she going to come home?  
There is nothing scarier, nothing more real, and nothing more humbling than being faced with the reality that the baby you checked into the hospital with might not be coming home with you.  There are times on this journey where I am reminded that I have no control in my daughter’s fate; I am simply here to help her complete her purpose.  This is a challenging concept to accept as a parent, however, I consider myself lucky to have found myself in this situation. 

I watched my daughter receive potassium, phosphorous, albumen, and blood transfusions.  Her stomach was deemed un-useable and her intestines could not handle her nutrition goals.  She was placed on total parenteral nutrition (TPN) via a central line that emptied near her heart.  Her body swelled from water retention and she received diuretics multiple times.  Knowing how close my daughter was to not being physically here with us has made me learn to truly appreciate every moment we have with her.  I have learned to understand what it means to not sweat the small stuff”.  I learned I do not have time for petty inconsequential things because they honestly do not matter.  I continue to have an inner battle in my mind over wanting her to be typical and meet milestones, but to be honest; I am just appreciative when she wakes up each morning.  While I will always be haunted by the experience and limbo of her 28 days in the hospital, I know that without them, I would not be able to put life in perspective. 

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Outsider

Phoenix Children's Hospital is a beautiful tower that you can see from many locations throughout the Phoenix area.  Prior to Sonzee, I could count the number of times I had visited, and only one of those times involved staying over.  With our son's congenital heart defect, we go on a routine basis simply to check in, and after his adenoids and tonsils were removed when he was three, he was required to stay for 24-hour observation.  When we used to drive past the hospital while on the highway, our son would point and say, "Look, it's my hospital".  Before Sonzee, when our son would say those words I would agree, but in the back of my mind I would think how he had no idea what taking ownership of such a place, of "his hospital" even meant.

I used to look at the gorgeous building and think about what went on behind the windows and changing LED lights.  A stationary building that looks empty except for the light in random windows at night.  It was not wondering in the sense that I wanted to actually know what went on inside the walls; it was more of a melancholy feeling that overtook me thinking about the sadness of the types of children that required this type of establishment.  I had known a handful of stories of families who lived a hospital life while carrying for children who were sick and it always broke my heart.  In the back of my mind, I would pay a sort of respect to those in the hospital while I was driving by, but I was merely an unknowing outsider.  

There is no way to possibly comprehend the magnitude of the power that is held inside a building so simple and so grand looking.  There is the physical beauty combined with the fact that this entire building’s purpose is dedicated to helping save children’s lives.  A giant chandelier hangs in the entry of the main tower.  It doesn't matter the amount of times I walk in and out, I always wonder how could they have possibly hung something so huge and dainty without it dropping to the floor and shattering?  The main lobby wall is covered with floor to ceiling glass windows.  It is almost ironic that the separating partition between the outside and hospital worlds is the large clear windows that essentially trap you inside a type of hell, as if to taunt you.  On each floor, each elevator area has a unique statue placed in front of a series of windows that give you picturesque views of the entire valley.  The rooms are bigger than the basic cruise ship room complete with a personal bathroom and are all private, which is a good thing for the many times you will undoubtedly break down in the shower.

Many times a day I catch myself just watching the flight path of the planes taking off and landing from Sky Harbor Airport.  Sonzee's room faces the south central portion of Phoenix with a view of many parking areas, ambulatory buildings, and the fire station.  This fire station has always been a source of contention for me.  It has the word HOPE facing up towards the rooms in huge white block letters.  I distinctly remember the first day she was admitted when she was 4 weeks old and her room faced that sign.  I took a picture of the word and actually felt myself receive some inner strength.  A year and 2 months later in a different room but same view, I find myself just staring at that word and feeling overwhelmed with every emotion except the naivety that such a word could bring. 

The word HOPE used to take on a different meaning when I was an outsider.  As an outsider, I spent my time with a secret hope to never have to know what it was like to be privy to the inner workings of living a life that involves routine hospitalizations.  As an outsider, I would spend my car rides daydreaming and hoping to never need to know what truly goes on inside the walls of a children's hospital.  As an outsider, I would feel a brief sting when I learned of other families who were unfortunately joining the ranks of a hospital life, but I was definitely in a world of ignorant bliss.  I miss being an outsider. 

Interestingly being an insider makes me feel like a more well rounded person.  I cannot understand the battles of all the families I have met in the playroom or the hallway.  Nor do I have an idea of what they are specifically going through, yet at the same time, I have a different appreciation for their personal circumstances.  As an insider, I completely understand the extra 2-minute hesitation while ordering a morning Starbucks beverage and the need to go sit on a couch and just play on my phone for long periods.  As an insider, I understand the emotion that is hidden behind the outward expressions that caregivers wear on their faces.  As an insider, I can tell when it’s a parents first time in the surgery waiting area; which means I also don’t feel awkward giving them a hug and letting them know it’s okay to cry.  As an insider, I have deeper clarity and can appreciate more while judging a lot less.

However, truth be told, I would much rather I was an outsider.

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24 Days

24 days.  The amount of time Sonya has spent in the hospital during this admission.  4 Friday's, 4 Saturday's, 4 Sunday's, 4 Mondays (as of today), 3 Tuesdays, 3 Wednesday's, and 3 Thursday's.  The amount of time our family has not been functioning as a unit.  3 weeks and 3 days.  The most consecutive amount of time Sonya has ever spent in the hospital in her 15 months of life.  More than likely, it will be the minimum amount of time it will take for me to get over this experience emotionally, physically, and spiritually.

When Sonya was first admitted I joked with the admitting physician about how we needed to be discharged by June 26 as we are planning to spend the summer in update New York.  (By the way, her admitting physician has already made it through her rotation and is back with us).  We knew this stay was not going to be short; however, I am fairly certain none of us expected it to be this long.  We are two days away from June, and we have yet to hear the official word on when she will be discharged, although it could very well be just around the corner.

We cancelled this trip to New York last summer when Sonya was officially diagnosed with CDKL5, as we feared she would develop hypsarrhythmia while we were away and we did not want to deal with that type of stress while out of our comfort zone.  I made Sam reserve the townhouse in January this year to make certain we would be unable to back out.  I sent in camp checks prior to March 31 to ensure the kids had their spots in camp.  Her epileptologist has given us her well wishes and blessings (I am pretty sure it's because she anticipates a month of silence from her inbox).  I refuse to let CDKL5 stop us again.

We ARE going to New York this summer. 

I am so looking forward to the complete family time, the evening BBQ's outside with family friends and the new friends I am anticipating us to make.  I cannot wait for my brother to come and spend a weekend or two with us and for us to get to go to "Uncle's pool".  I cannot wait to sit outside and hear nothing but crickets and upstate New York sounds.  I am eager to see the evening skies lit up by lightning bugs that the kids will need jars to catch.  I can already smell the fresh smell that only comes when the lake meets tall forest trees and the air-cools at night while you sit outside and bat away mosquitoes.  I am calmed at the thought of the tranquility that awaits us.  The type of serenity that is only found by being tucked away in a little community off the main road.

After these last 24 days and however more we have to go, this trip to New York will definitely bring us back to where we need to be as a family, as a unit, as a whole.  It is definitely going to be a much-needed help for me as I transition back into being an active mom of four kids.  It is really something how being in the hospital for an extended period can knock you off your game.  We are going to have to relearn how to be a family again and I am so thankful it will be in such a beautiful location.

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Warnings

When you study a specific subject matter for a lengthy amount of time, you become extremely knowledgeable on that topic.  The same can be said in regards to dealing with certain situations for an increasing length of time; you become so well versed on that specific subject matter that you know its ins and outs.  When you spend your days caring for a child who has a specific genetic condition, even without any prior formal medical training, over time, you become an expert in this specific field.  That is why from the very beginning of this journey when other parents in the CDKL5 parent support group shared their experiences with seizure treatments, the best types of therapies, vaccinations, overall health difficulties, etc., we have listened and we have trusted.  

Every wobbly step Sam and I have taken on this journey has been done while holding the virtual hands of other parents with kiddos with CDKL5.  All of these parents love Sonzee as much as we do.  They want only the best for her.  They share their experiences both successful and those that turned out unfavorable for us to use as tools for guidance.  The successes they share to not only instill hope, but also with an extreme desire that this specific recommendation might result with the same positive outcome for Sonzee.  They share the unfortunate experiences not to take away hope, but more as a warning; a message to keep in the back of our heads that says, "Hey, this could happen" or "be sure to keep a lookout for....”   

As we all know there is no specific cookie cutter route for dealing with all of the situations that could potentially arise while having a child who has a CDKL5 mutation.  Each child has his/her own specific path to take, dealing with his/her health and developmental obstacles.  There are certain key elements that are present in the majority of the kiddos, but how each child responds to specific treatments, therapies, vaccinations, etc. varies.  The only option we have is to take the advice of other parents, combine it with the information shared from our medical professionals, follow our wavering instincts, and simply gamble.

I personally am not a fan of gambling, it is not a thrill of mine.  Maybe it is because the negative feelings of losing outweigh any potential feeling of joy that could occur if I were to win.  Maybe it is because I am not an inherently lucky person and I figure with the odds against me that there is no point.  No matter the possible reasons as to why, I just really dislike gambling.  This is an extremely difficult thing to dislike when essentially EVERY decision we will ever have to make for Sonze is based off some sort of gamble.  A gamble that no matter what the result is essentially life changing in all interpretations of that term.  From the very beginning, we have lived with only seeing the consequences of our choices in Hindsight.  

These past three weeks we have seen the consequences of our choices for Sonzee play out in a manner that has left me way down at the bottom of the coaster.  I do not and cannot regret any of the decisions we have made, I know we are only doing our best with the situation we have been given.  HOWEVER that does not change the guilt, anger, and sadness that follows when you see your child suffer based on the decisions you made with the main goal being to help her.  It is so hard to say if her current predicament is a result of the ketogenic diet, the gtube placement, the high dose steroids, or a combination of all of the above.  Was this issue inevitable regardless of any decision we made just because of her specific body and the effects of her specific CDKL5 mutation?  Regardless of the cause, I cannot say we were not warned.

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Humour

When someone I know is upset, my initial reaction is to make a joke.  Humor and laughter is my coping mechanism in serious situations.  I do not like the awkward tense feeling that accompanies depressing situations, so much so that I have been known to make “funny” statements during what might be inappropriate times.  As an extreme example, similar to those times depicted in Lifetime movies where the police are investigating a serious crime and the person has the most opposite reaction to what would you would expect, yet they are actually innocent.  A more personal example would be that time my oldest daughter tripped and fell into the corner of a wall.  She hit her head in the perfect spot to get a goose egg, which started growing at a grossly inappropriate rate.  Instead of being overly concerned I grabbed an ice pack from our neighbor (it was at her house), gave her a cuddle and was laughing so hard I had tears in my eyes as I held her.  In most cases, I do secretly wonder if someone is going to call CPS on me due to my reactions (although that could also be due to my overwhelming neurotic worrying trait).  It is just so much easier for me to make light of a situation.  If I feel uncomfortable, I automatically make a sarcastic comment and/or crack a joke. 

We have gotten close with many of the members of the medical team.  I like to think that it has to do with our family comedy routine.  I am pretty sure every nurse, doctor, primary care technician, etc. who comes into our room is well aware of my antics.  The majority of them understand my need to crack a joke or two and they typically join in on the fun.  I have to admit that these jokes are not “knock knock jokes”; they are typically a sarcastic statement as to what we are dealing with when it comes to Sonzee, seizures, and or CDKL5 in general.  I try to make our situation less scary by balancing the seriousness of Sonzee’s issues with the little Sonzee bear flare.  I feel like my little jabs are not only therapeutic, but they shed a little insight into my vulnerability as a mom, and how I handle things.  I think it gives the medical team and good representation of what type of person they are dealing with.

In creating a lighthearted atmosphere, we have made it possible for medical professionals to look at us as more than parents, at Sonzee as more than a patient, and Sonzee’s siblings as part of the package.  Just last Friday we had our favorite senior resident in the room while Sam and I were attempting to have a serious conversation with the Interventional Radiologist.  Simultaneously we had three rambunctious kids literally climbing the walls and furniture.  The senior resident left the room and came back 5 minutes later with three zip lock baggies each filled with a coloring book, markers, and stickers and then sat on the floor with the kids while they colored, which allowed us to finish our conversation with no distractions.

 I like to think that our inability to create boundaries with professionals and invite them into our lives on a deeper level has helped to foster this type of relationship. 

This most recent hospitalization has been one of the toughest experiences thus far on Sonzee’s journey with CDKL5, but in my opinion if we keep up with the laughter, with the jokes, with the sarcasm, and with a smile, we might just make it out alive.   

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Too Busy

There are many things that really suck when you have a child with special needs; dealing with developmental delays, making medical decisions, the emotional toll of pretty much every situation that occurs, and the list continues on and on and on.  However, I have found a new low as I continue on this journey.  A new pain experienced that hurts like nothing I have dealt with before.  A feeling that brings tears to my eyes with only a simple thought.  A situation I have tried to avoid since the very beginning and clearly like many other battles being fought along this journey I have been unsuccessful.  

"It's okay, Ema is too busy"

The words spoken by my 6 year old to my mother at dance when she could not get a hold of me on FaceTime so I could see her new dance outfit.  The words that are so untrue as it was just a bad connection and I had to disconnect from the hospital Wi-Fi in order for my phone to work.  The words that carry so much more weight and so much disappointment that my heart is torn into two pieces.  The words the express the pain of an older sibling trying to cope with an experience that no sibling and especially no child should have to endure.  

There used to be a time when days were not filled with constant talk of all things CDKL5.  When that combination of characters was not spoken in our home.  There once was a time when my 6 year old did not ask about G-tubes, NJ-tubes, and IVs.  When she did not draw pictures of four children and explain that the reason she drew Sonzee standing is that “when she is two she will be able to walk”.  There used to be a time when our plans were not contingent on a child with special needs.  A time when our 6 year old didn't have to wonder if it would be Sam or myself picking her up from school, going to her events, and/or spending the night at home.  There used to be a time when we were not a family who was constantly divided.  

This hospitalization has rocked us to the core and it continues to go on.  Apparently, there are some areas of personal growth I clearly cannot master without spending weeks in the hospital watching my baby girl physically suffer and the older kids emotionally suffer.  I guess there is still something to be positively gained from an experience that I will not ever understand.  I do not even know that understanding the situation would even matter.  A year ago I honestly did not ask G-d "Why me?"  On days like today, I am vulnerable to those types of thoughts.  

I wish I could clone myself and be at home and in the hospital simultaneously.  Even though ¾ of my children “do not need” me in the same way Sonzee does, ALL four of them need me as well as I need all four of my children.  My heart hurts thinking of the pain Sonzee’s siblings are experiencing and knowing that there are limitations to how I can fix it.  The worst part of it all is that it is a stark reminder that even though I am trying my best, sometimes my best is just not good enough.  

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