This, too, shall pass

It is 3:23am and little bear finished her seizure about 5 minutes ago.  She is back up to the 4ml dose of Zonisamide we attempted to give her last week while in the hospital.  We are trying to give this drug a chance, get her to a therapeutic level and then judge, but my gut says to jump ship.  I know part of that feeling is out of fear and the complete loss of control we have found ourselves in.  The other part of me believes whether it is now or a month from now, Zonisamide is not going to be her saving grace.

So here we are, here she is in this situation, and here I am back to my middle of the night posts and waking up to alarms and seizures.  I am angry and sad.  This is NOT what I want for my two-year-old, this is NO way to live, this HAS to stop.  But how?  Where is the magic?  Where is the cure?

I am doing my best to not play the "what if" game, to not analyze our decisions with a microscope.  I am telling myself that this would have been the outcome regardless of stopping Sabril, that this was all in the plan because we are in the dreaded toddler years of CDKL5.  That we are not responsible for her current situation.  I do not know if this is 100% true, but I also do not know that it is not.  I know I should try and be open minded.  As her doctor reminded me last week, we are running out of options, so I really want (need) this medication to work.

I am so beyond broken for little bear.  This is absolutely horrific to experience as a parent.  I am hopeful that we will eventually get her seizures under some sort of control, until then, the message I received in my bath bomb before bed is going to be what I make my brain focus on every time I close my eyes.

Dear seizures

Dear seizures, 

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

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

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

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

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

Good luck, 

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

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Every storm...

8:51pm, 7:11am, 8:07pm, 5:44pm, 9:06pm, 11:06am, 1:13pm, 11:10am the times over the past five days that I remembered to use the seizure tracker to keep a record of the seizures little bear has had.  I wish I could say that after watching her seize over the past 16 months that it has somehow gotten easier.  That it doesn't make me want to cry watching during or now, afterwards, while she sleeps because the last one was 5 minutes long causing the app alarm to ring to tell us it was time to administer her rescue medication.  I wish there was actually some meaning behind my words when I say, "they don't even phase me anymore", because honestly they still break and take a piece of my heart every.  Single.  Time.

No remote location, no amount of beautiful scenery, no amount of positivity can take the sting away from watching your baby seize while you watch helplessly.  Random thoughts running through your mind.  When is this going to end?  Should I have ignored Sam and brought her suction machine anyway?  How long until we should give her the rescue medication?  Why is the CBD oil stored in the refrigerator and not next to me?  Is this one causing brain damage?  Why are her hands and feet turning red and clammy?  Why is it still happening?  Is she breathing...is she going to stop?  

The fear, the anxiety, the extreme panic that occurs each and every time is probably enough to qualify me for a prescription of diastat (rescue drug) myself.  It takes me much longer than little bear to recover, to that I say Thank you G-d.  It has been over three hours and she is most likely out for the night; thankfully not awake reliving the experience, or in any more pain, (we gave her Motrin when she was whimpering and restless afterwards).  Me, well I sit here switching between Taylor Swift and Gary Allan, again exhausted beyond belief and blurred vision, sipping a glass of wine and holding back the tears that will eventually find their way onto my pillow.

It is the nights like tonight that I HATE the strength that I supposedly have.  The strength that leaves me feeling angry and sends me straight into the land of Why?  (For the record, I hate entering this land)  "Why Sonze?", "Why our family?", and the one I feel most guilty of, "Why me?"  Aren't other families that can handle this better, more gracefully, with more faith, who are actually strong and don't ask why?  Aren't there others who are better equipped to deal with this?  Oh, how I wish there was a way to take a little bit of the pain and all of these feelings and bottle them up into a glass bottle to be corked, buried, and NEVER opened.

My ability to keep on pushing through right now is in part to the lyrics in Gary Allan's "Every Storm"...

 Just put your feet up to the edge, put your face in the wind And when you fall back down, keep on rememberin' 

Every storm runs, runs out of rain Just like every dark night turns into day Every heartache will fade away Just like every storm runs, runs out of rain 

It's gonna run out of pain It's gonna run out of sting It's gonna leave you alone It's gonna set you free

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Closer than yesterday

I have always been my own worst enemy when it comes to expectations I have set for myself.  I can be hard on myself for getting easily frustrated with the kids, not being as well put together as other mother's, not being able to do everything that I have set forth on my agenda for the day.  There are plenty of days that I stare into space for a good majority and then find myself upset that I did not take advantage of the time I could have spent doing other things, maybe "more" necessary things.  I am sure there are people who tell me that I did the best I could for the day in question.

If you are a part of our Facebook family then you probably have seen the pictures of Sonzee bear working hard on her physical skills.  I cannot speak for her, but I can guess that if she could use her words, she would tell me how frustrated she is with herself for not being able to bear weight on her arms and knees.  I think she might express disappointment within herself for not having met the age appropriate milestones that have passed by.  If she could talk and she did tell me that, it would be beyond heartbreaking.  I know how hard she is working, I know that even though it may not appear obvious to the casual onlooker, each day she is achieving little Sonzee-Stones.  

I have been speaking with others who are feeling as if their life is not all wrapped up neatly in the perfect box with the perfect bow.  Things in their life are a little off kilter and they are not sure how to regain their focus.  They have conveyed their fears and their anxiety, and admitted they are just so unsure about the direction their life is going.  They have doubts about employment, mothering, and their day to day actions. 

It can be so easy to be bogged down by the hustle and bustle of everyday life that we do not really see the bigger picture.  It is not every day that we typically sit in a moment of reflection and really realize all each of us has endured over the years causing us to make certain decisions.  We all have personal challenges and difficulties we must overcome and little by little every day we all do just that.  Every day is a new day and a chance for us to start fresh but not to forget how hard we have worked to be where we are at this exact moment.  I think this is one of those quotes that need to be turned into a magnet and placed in the kitchen, because...

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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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Keep going

I am pretty sure it was quite obvious that by the end of last week I hit a personal low.  Those times are never easy to acknowledge or admit aloud, but thankfully this blog and all of the support that accompanies it has allowed me to really feel and embrace the emotions that come with being a parent of a child who has special needs.  There is always beauty in this chaotic and insane life I am a part of, but some days I do not want to see it.  Some days I just want to schedule some me time to wallow in self-pity, eat unhealthy foods, drink a glass a wine (or a frozen margarita) and just feel all of the pain that I work so hard to keep bottled up inside.  I feel like every once and a while it is okay to take a day to feel sorry for myself, but then I need to come back to reality and embrace the position that I have been placed into.

It is usually after I experience the darker days that I am more rejuvenated to get back on the horse.  I feel a sense of eagerness and excitement to tackle the tough times, embrace the joy, and celebrate the tiniest fetes.  It is as if my old blood has been replaced with healthier more positive blood that helps me to better function.  Once I "return" there is a sense of ease that sits within me, a new appreciation for the role I am playing in this life.  It is at this point, where I give in to the fact that I have no control over what the future holds and I just need to buckle up.

After a year, I can say this is my favorite part of the coaster.  The part right after the harness comes down across my chest and I tug it slightly to ensure it is secure and the coaster car pulls away to embark on the slow ascend to the top.  This is the part where I get to dangle my feet and think about everything that lies ahead with a sense of eagerness and slight tinge of fear.  The part where the course of the coaster is unknown but knowing deep down it is sure to be a thrilling ride.  It is during this time that I feel every emotion in me, but the sheer energy within me brings about a huge smile.  It is at this point when the Rascal Flatts song "Stand" fills my head and I just have to brace myself for the descent of the coaster.

"when push comes to shove

You taste what you're made of

You might bend till you break

'Cause it's all you can take

On your knees, you look up

Decide you've had enough

You get mad, you get strong

Wipe your hands, shake it off

Then you stand, then you stand"

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Brave

I am not quite sure what my thoughts are tonight.  It is definitely unclear where one ends and one begins.  This whole last week has been quite a blur.  I have been saying for some time that I knew Sonzee's toddler years were going to involve many hospitalizations.  I had an idea that she could very possibly come close to leaving us, but knowing deep down she would fight as hard as her little body could in order to stay.  I had no idea what the reality of these situations would entail.  Oh little Sonzee bear…it is so painful to watch her endure everything she has to.  I am not even sure how much a little body can tolerate, but I can tell you, this little girl is one strong little fighter.

I never fully understood what was meant when people called a sick child "brave".  I never had a sick child, so how could I?  This past year of Sonzee's life and especially the last week specifically has shed light on that phrase.  Since last Tuesday, she has had six IVs.  I have honestly lost track of the amount of sticks her little limbs and head have endured in order for those six IVs to be successful, not to mention how many additional blood draws she has had to have because her veins just shut down.  She has finally received "IV TEAM ONLY" status, which signals to every nurse not to touch her.  Her little veins clot so easily that each time she has an IV placed and they take the initial blood return for testing, the vein no longer gives any blood.  This results in more pokes and more bruises.  There is no location on her body untouched.  Even if the IV "works”, they start to agitate her around 24-36 hours after placement and then I have to ask for a new IV to be placed so she is no longer crying in pain.  It is truly heartbreaking to witness and not be able to do anything.

Thankfully, they started to take her to the treatment room for all of the madness; it will hopefully keep her less stressed when she is just hanging out in her crib.  I have that filled with toys and a drawing her "twin girl" biggest sister made for her, as well as blankets she is familiar with.  I am trying to make her days similar to how they are at home and as comfortable as possible.  It has been challenging trying to figure out the culprit to her infection and exactly what is bothering her.  Playing detective is definitely not easy, but the little bear is being a great sport.  I wish she did not have to suffer and go through all of this.  I definitely do not feel as brave or as strong as she is presenting, but she is keeping me in check, for her.  I am pretty sure after all of this is over and the dust settles I will have reached my breaking point, but for now, I will try to do her justice by being as strong and brave as she continues to be.  She is definitely one of the bravest little bears I know.

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