Fate Sealed...

On March 17, 2015 during her first PEMU stay we agreed to send off lab work for genetic testing.  When the neurologist brought up the suggestion stating it was to rule out genetic causes of epilepsy, I shrugged my shoulders in a cocky manner because Sam and I had genetic testing done through a reproductive endocrinologist prior to any pregnancy, and everything as far as genetic compatibility went, checked out great.  Of course, in my mind, Sonzee didn't have anything genetic, how could she?  On March 26, 2015, the lab received her sample and began to compare her genetics to that of 187 genes associated with causes of epilepsy.  Life for us carried on, but oh, how naive I truly was.

4 years ago yesterday the report was sent to the hospitalist at Phoenix Children's Hospital.  Theoretically, her fate was sealed with that fax, but really it was always present; before I even knew I was pregnant, the entire 9 months I carried her, and for those first few weeks of her life during every questionable movement that was attributed to "baby's do weird things". Who would have even considered a genetic mutation for epilepsy?  Who knew such a thing existed, especially with no family history?  I honestly didn't even think about the potential positive result phone call, thinking back I don't even remember thinking about the tests after they were sent off.  While there was "no reason" for her epilepsy, that was "okay", it meant she could grow out of it, and that's what we wanted, that's what we hoped for, but that is not what we got.

4 years ago today, the hospitalist who sent for the testing electronically signed that she received this document.  I wonder if she had even heard of CDKL5 before this was placed on her desk.  I know when her neurologist at that time received the result she had not.  We remained blissfully unaware of what was sitting less than 5 miles away for another 4 days until her neurologist called to let me know she received results.  I wish I could remember life before seizures, before hospitalizations, before real worries and fears, before life with CDKL5 became our world and our normal.  I wish I could remember what I was like as a parent before our lives became consumed with all things CDKL5, before my naivety of the medical world was stolen from me, and essentially before her fate was signed, sealed, and delivered on a faxed piece of 8 x 11 paper to a doctor we hardly knew.

Nine

When Sonzee’s oldest sister began Kindergarten I wrote a blog post wondering what it would be like when it would be Sonzee’s turn to do the same.  I have this constant inner battle trying to emotionally prepare for future scenarios such as that while trying to protect myself from the possibility that another scenario could take its place.  This past week has been birthday week at our house again.  Today is the day before Sonzee’s oldest sister turns 9.  A birthday that is a milestone simply because it is the LAST single digit birthday she will ever celebrate.  A thought I honestly probably never would have considered if it weren’t for Sonzee.

As I was getting ready to take a shower, abandoning the idea of writing a blog post, the post began to write itself.  What chapter will Sonya’s Story be on 5 years from now,  What will have unfolded in the days, weeks, months, and years between now and then.  Will I be in a state of shock that we would be 3 weeks from a celebration I was fairly doubtful would occur?  Or will I be mentally preparing for the day in a completely different manner?

There are situations that parents should never ever have to consider, fates they should never have to entertain, obstacles that should never need to be overcome.  There are realities parents should never have to face, yet unfortunately so many have to.  When you are faced in such a slimy predicament, the most difficult part is allowing yourself to dream of the less “expected” outcome becoming the reality.  It is telling yourself that maybe, just maybe things will work out differently than you can allow yourself to anticipate.  It is trying to convince yourself that it is OK to think positive because you might actually not get hurt doing so.

Living life with a medically complex and fragile child is working really hard at playing devils advocate in the opposite manner and challenging yourself to believe that your child could defy unknown odds.  What I personally find the absolutely hardest thing to process when it comes to mentally “preparing” is overcoming the notion that no matter how many wars we win, ultimately, at some point in time, the unsugar coated reality of this type of life means that we will lose the battle...it is just a matter of when...so while we wait for “when”, I have to sometimes require myself to celebrate all the nows.

Playing the part

I often find myself wondering why people are "chosen" to live the lives they are specifically given.  I like to equate it to casting actors in a movie.  The majority of the time I find myself saying "no one else could have done that role as perfectly, the casting director did a fantastic job".  Occasionally, there are those movies that might have been a bigger success or at least turned out a bit differently had another person been given the part.  However, there is nothing that can be done after the roles are assigned and the movie is created. In all fairness, it is difficult to see how good or bad the movie will be until it all comes together and at that point the actors did their bests, the movie is what it is, and there is no going back to the drawing board.

The thing about casting is that it is highly subjective.  For whatever reason the specific actor was picked and not everyone might agree with that choice.  I find myself wondering if the actor selected always feels that it was the best choice.  Maybe someone else urged them to try out.  Maybe they went for it on a whim.  Maybe they did not really feel they would get it.  Maybe in the end they did not actually want to be that character.  Yet here they are given a specific opportunity to represent this character.  They have to now give it their all and put their best foot forward.  They have to become one with this character as if they have always been this person.  They have to own their role.  For better or worse this is what it is.  There are no ifs, ands or buts about it. 

This week especially this has been on my mind.  I have been cast into the position I have been for literally G-d only knows why.  Despite my hefty desire to shout up at the sky and say "what are you doing?", "why is it I can handle this?", and "how is this even possible?" I am playing this part because it is mine.  I didn't realize I had been auditioning and I am sure someone else can do this entirely better.  I have no idea in what direction this movie is going, or what the end will look like.  All I know is that this was given to me for a specific reason and like I have been doing since April 2015, I will just keep having to fake it until I make it.



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Inner conflict

I have been staring at an empty blog page for close to 2 hours.  I have so many things going through my mind and emotions traveling through my body.  My inner dialogue is about as organized as my diaper bag, and to lend some insight, I just took out an extra outfit for Sonzee's baby brother that was a size "Newborn"...he will be 5 months in less than a week.  For some reason, the impact of CDKL5 is all of a sudden just hitting me hard, and I cannot escape it. 

While the more rationale part of my brain tells me “You cannot live like this.”, the other parts are not strong enough to win that argument.  The trauma caused by this diagnosis has planted its roots deep into my psyche, making things feel impossible.  I try not to live in the fear of the potential of losing Sonzee on a daily basis, telling myself that “the length of life is not certain for any of my children”.  I am trying to convince myself that Sonzee’s baby brother is going to be a typically developing child, and that when my children have “minor aches and pains”, they are just minor, that they “will not be the worst case”.

I cannot decide if I am spending more of my time panicked about the potential “worst cases” or trying to thwart those thoughts?  Each day I wake up and for a split second I feel calm and at inner peace.  Then the panic fills my chest as if I just breathed it in, and then it finds a nice cozy spot inside and just sits.  I cannot breathe it out, I cannot make it go away.  Every moment from that point on is spent trying to tell myself that what I feel is not healthy and that I need to not focus on these things.  I can only try to take deep breaths, ignore the heaviness, and pray for it to go away. 

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It is with sadness...

We had a great Thanksgiving day with some close friends of ours and then we put the big kids to sleep.  Sonzee fell asleep in her favorite spot on the floor and then I went onto Facebook.  As one of the admins of the CDKL5 support group I receive notifications when a person makes a post.  I typically pop over to see what information is being shared or what question is being asked...and that's when I read the news.  The news I foreshadowed as the season began to change almost a month ago, the news that the entire CDKL5 family dreads...the news that informs us that we have lost another precious CDKL5 family member.

Instantly my heart begins to ache as it simultaneously breaks, my chest begins to tighten, and my pulse increases.  Unfortunately I know this feeling all too well because our CDKL5 family endures these losses far too often.  It is a mixture of pain for the family, panic that we could be next, relief for the child that he (in this case) is no longer suffering, anger that this child and his family had to deal with CDKL5, and sheer frustration that in 2016 science hasn't found a way to fix or eliminate genetic mutations such as CDKL5.

No matter how optimistic, hopeful, or positive we are as parents of a child with a CDKL5 mutation there is no winning.  We do our best to make our children as happy and loved as possible.  We give them as many opportunities to thrive as we possibly can.  We make decisions that will hopefully only increase our child's quality of life.  But in the end no matter what we do, we can't beat the CDKL5 mutations themselves.

As the holiday season officially begins as well as #GivingTuesday this Tuesday, I ask you all to consider giving a tax deductible donation to Sonya's Story to help fund crucial research (such as keeping Hope4Harper's cell line maintained for a year) so that posts like this one don't have to continue happening.  I ask you to consider buying Sonya's Story and CDKL5 apparel to help spread awareness of CDKL5 (all proceeds from those sales go directly to Sonya's Story to be given to research institutions to help us find a cure).  I encourage you to help us find a cure!


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Change

It is close to midnight and my eyes are so tired that it is a constant battle to keep them open.  It is getting to the point that the blurry vision is getting more challenging to blink away.  Each blink clears them up a bit, but then within a millisecond, they are fighting the weight again and I have to blink multiple times and rub them to be able to focus.  Now comes the million dollar question, Why am I still awake?

Since adulthood, I have never been the best sleeper.  Scratch that, since I became a mom I have honestly lost all capabilities of going to sleep, and forget staying asleep.  We can casually blame it on nerves, worrying, the fact that nighttime is the only time I can get things done, and the fun fact that 50% of my children prefer to sneak into my bed multiple times throughout the night, steal the blankets, take over my space, and hope I do not notice their presence.  If I am honest, those are all fancy excuses for the fact that nighttime is the time I get most of my inspiration in terms of my blog posts.  It is the time I am most in touch with my emotions, the time I allow myself to reflect on the day, and the time I am able to decompress and process everything that is going on within my life and around me.

Tonight as I sat in front of the computer screen trying to figure out what I wanted to share, I started to think about the events of this past week.  In a short summary our house air conditioner broke on Sunday, our cars compressor melted (YES IT MELTED) on Monday, and our brand new car's (that we purchased Tuesday) air conditioner fizzled out on Wednesday.  Looking back at the past 4 days, I am left with my usual mixture of emotions.  

• Thankful that if something had to happen it was to inanimate objects and not Sonzee or one of our other children.  
• Amazed that if we did not have questionable luck we really would not have any luck.  (<-which reminds me, we REALLY need to start playing the lottery, because our chances of winning are surely MORE than the amount of rare things that can occur to one family).  
• Numb.
• Confused by how I feel about it all.

When I think about me prior to Sonzee, I think of how my reaction to this past week of events would have been very different.  Maybe better in some ways, but not in others.  I think how I probably would have been so excited that Sam actually went out and bought me a NEW 2016 vehicle, not a used one.  If you knew Sam, this is HUGE.  Yet, I am not excited I am honestly indifferent.  I am angry with myself for not doing a happy dance down the street, but the truth is, I am incapable of getting excited about such an "insignificant" thing.  It is a car.  I think how "not normal" it is that when replaying the events aloud I actually said, "Well, if bad things had to happen at least it wasn't Sonzee dying".  (<-because that is a normal parent thought)  I think how I might have gotten more mad prior to Sonze, but overall, I just do not care.  

To be honest, what bothers me more than anything else is that I am numb.  I miss feeling more normal.  I think how I am just a shell of the person I once was.  I have some parts of me that are the same, but a huge part of me is no longer here.  I wonder if it will ever return.  I keep wondering if I am supposed to go back to the old me, or was the old me not who am I supposed to be?  Is one of my tasks simply to be able to overcome all these obstacles AND find my way back to myself, or am I supposed to become something better?  Just to give you a sneak peek into the workings of my tired brain, I will leave you with three quotes that represent my current thoughts...

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