Split second

Sometimes I feel like Sam and I part of grand jury spending hours deliberating making a life or death decision when it comes to Sonzee's care.  Partly because that is literally what we are doing, minus the whole being paid to sit on a jury component, and partly because we spend so long making sure we weigh the pros and cons of every possible solution to ensure we are making the best possible choice when it comes to Sonzee's life.  Then approximately every 2 months, give or take some time, it seems one split second of time rattles all the confidence we had placed on whatever decision it was we had made.  I wish I knew why my initial reaction is to second guess the decision vs just acknowledging this is simply the beast of CDKL5, but alas that is what occurs.

I wonder if it's because of the fear that occurs wondering if the solution we were hoping would last has in fact failed.  Or maybe it just simply feeling vulnerable because our choice was not correct. (I do know there isn't an actual manual to follow in regards to caring for a child with medical complexities and we do our best, but that doesn't mean I believe it all the time).  Or maybe the choice was the best choice for the time period that has passed but now we have to go back to the deliberation room and review all of our notes knowing we are even more limited this time in our potential band-aids.  Maybe it could just be a simple fix, but history has repetitively negated that idea, so that is shelved until all the above has been ruled out in my mind.

In the back of my mind, there is always this voice that pops in to say what happens when we have exhausted all of our options and nothing works?  What then?  What choice do we have at that point?  Is there going to be a time that we say we have done all we can do?  If so, then what?  Gosh even with a little over 4 years under our belts in some ways I feel like we just started this journey.  The weight of the past and fear of the future continue to get heavier and heavier as time goes on, yet instead of it lasting a split second, it seems to be never-ending.

Innocence

From the very beginning of Sonzee's life, Sam and I have always been very open with her siblings about everything going on.  It would have been extremely challenging to not be when from the start I did not come home the first week after she was born because the hospital allowed me to stay in an unused portion of the maternity ward while she remained in the NICU.  Then just a few weeks later we found ourselves taking Sonzee to the pediatric hospital where her seizures were confirmed.  The hospital staff made an adorable epilepsy bear, complete with the EEG leads, gauze, and colored string so that our then 5-year-old, 4-year-old, and 21.5-month-old would not be scared to see her when they came to visit.  We did our best to answer their questions in age-appropriate ways and when they left us stumped or after I winged an answer, I would refer to child life to help me out and or let me know if I answered them appropriately.

During one of Sonzee's lengthy stays when she was 15 months old, her oldest sister did not want to visit her.  We respected her decision but always gave her the option every day.  It is a tough place to be as a parent because there is a fine line of reality and the black and white fact that any of the hospitalizations could be one way.  I was so worried that Sonzee was not going to leave and then her sister (who is extremely close to her) would feel this unnecessary guilt for not visiting.  But how exactly do you explain to a young child that her sister might not leave the hospital without causing nightmares and unnecessary fears?  When you become a parent, who even thinks of this under their list of top 10 potential parenting dilemmas?

As Sonzee has gotten older, the hospitalizations have become so routine, her siblings get disappointed, more than anything else, that the family will be split until she returns home.  They do not really understand or grasp the severity of what us taking Sonzee into the ER really means.  I think I am okay with that in general, after all, her siblings are now only 9, 7, 5, and 1, they should remain children as LONG as they can be, as long as every other child does.  But their life is not like that of every other child, there are just sad realities that come with this life.  Even though our children see Sonzee's daily struggles and know there are children "like Sonzee" who have passed away and have even met siblings of those children, they are still very much children, and still very much innocent.

There is a part of me that is relieved this is the case, and then there is a part of me that hurts because at some point in their lives it will make reality more heartbreaking.  On Sunday my oldest son asked how Sonzee would give herself medicine when she is older.  I let him know that she would not be able to live alone and that someone would be doing her medicine for her.  He took a second to process what I said and then inquisitively stated, "oh, she won't?".  To which my oldest daughter happily replied that she is going to be taking care of her, and she will be living with her.   My mind simultaneously gracious at the offer seriously wondered if I wanted her to put her life aside to even take that on.  Then my middle daughter interrupted that thought to ask how Sonzee was going to have a baby, and I let her know that she would not be having a baby.  My then oldest daughter paused for a second and with a surprised reaction said, "oh she isn't? well, then how is she going to be a mom?". I took a second to process where this conversation had just gone and simply replied that she will not be able to be one and then I asked them to make sure everything was cleaned up before we headed out to afternoon activities.

I texted two of my go-to's for these types of conversations and I mentioned that what broke me more than anything is that they really do not even comprehend what the most likely reality is going to be.  I have honestly not even thought far enough ahead to have even considered Sonzee as an adult.  I know there are many parents who might disagree with my thoughts, but at least once a month I post a prayer request for a family who has to bury their CHILD.  It is a reality that accompanies our life.  Whether I say it aloud or not, it does not change the facts of Sonzee being medically complex and that her body is unable to function in a typical fashion.  Yet, to be brutally honest, the most challenging part of this reality for me to wrap my mind around, is how this eventual inevitable outcome will affect my other children.  

Until

I admit that prior to having Sonzee I had no idea that becoming a special needs parent could happen to me.  While I knew anything was possible and working in the special needs field brought it semi close to home, I really did not think it would ever become my home.  Who would have thought those parents of the babies and preschoolers that were my clients back in 2008-2011 would now provide me with a different level of education and support.  I wonder if they worried for me when they knew I was pregnant each time.  I wonder if their hearts broke when one of their friends shared that they were now joining this unique and mighty elite club.

Even if you are told "the odds of" having a baby with XYZ are less than 1% you never expect YOU would become that statistic?  Literally almost daily a new Facebook friend of mine is having a baby.  The vast majority are (thankfully) healthy and amazing babies born to parents who don't seem to have considered what could have occurred.  Maybe they do and they just don't share those fears?  Maybe they really are obvious to rare.  Maybe they know but figure there is no point in worrying?

I will admit there is a little bitterness that occurs within me when I see my friends 3-4 year olds.  It just dawned on me yesterday that Sonzee should be in school with her cousins, sandwiched between their classes and playing with them at recess.  I know she has been 9 months younger and 18 months older than her cousins her whole life, but I did not stop to think about that fact.  It makes a little annoyed that they are all missing out on that experience.  (I know they have other ones, honestly, I don't care, I want the ones that are being missed).

The entire time I was pregnant with Sonzee's youngest brother I was a mess.  He is almost a year and it wasn't until recently that I have started to relax a little.  The fear of rare sneaking up on us again is real and at the forefront of my mind.  In a way I want a repeat because I feel like I missed out on enjoying his infancy.  When I think about how I had no idea about parenting a special needs child before Sonzee the way I do now, I think it was a blessing, and probably the reason no one ever really thinks about what could happen to them until it does?

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Trying to find the positive

Whenever I find myself getting sucked into the trenches I try to focus on something positive, even if it is a reach.  There is always a fine line of looking at the bright side of a situation and embracing it, but not fully relying on it remaining that way.  For me I have to be careful because the path of this journey can change in a second (literally) and then the positive reference is no longer.  It is because of the experiences we have had over the past two years, (during springtime especially) that I am having finding it more challenging than usual to find the "right" positive point.

It has been a little over 24 hours since Sonzee's last seizure.  It wasn't one of the scary ones, it didn't require oxygen after it was over, and she didn't sleep for hours on end.  I am so grateful for the past 24 hours, but I know better.  Maybe her medication increases are finally working.  Maybe her brain is being nice to her and giving her a break because it's been a pretty awful week, or maybe it is just giving her some time because of what is yet to come.  I wish I could be as excited as I once was over making it to 24 hours, but two years in and I know while it is a huge deal, the celebration will not last.  I am numb to seizures.  I wait and expect them and am more surprised than not when they do not happen.  Truthfully I prefer knowing they are coming because it is a certainty, something I can "plan", something "reliable", I do not like to be sitting here in anticipation.  So I am trying to focus on the past 24 hours...but I know the clock will reset.

It has been a significant amount of time since Sonzee has been inpatient and last year we spent approximately 3 out of 5 months in the hospital (not consecutively) from January-June.  Her health since her NJ tube was placed has been relatively stable, her feeding continues to be tolerated, her seizures haven't landed us in the emergency room requiring rescue medications.  I am truly appreciative of these blessings, but I know things can change by the time this post publishes.  I know too much of what can happen and I know she is not immune to anything.  I am trying to focus on the positive of all I have listed, but that almost feels as if I am asking for a challenge...and I am not all for tempting fate.

It would be nice if the current situation we were in did not leave me feeling a bit uneasy.  It is as if my brain and body subconsciously know things are going to spiral out of control.  I hope it is merely the fear of history repeating itself.  Since we are in this uncertain limbo, I am going to do my best to focus on the fact that she is stable and continue to try and find the "perfect" positive.
 

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Pity

We are all guilty of thinking it.  We are all guilty of feeling it.  When we find out someone's child was diagnosed with cancer, or when someone has a family member who has died, its essence surrounds us.  When we learn a child is diagnosed with an incurable disease, we all immediately think "How horrible", "I can't even imagine", "So awful", the list goes on and on, and so does the overwhelming sense of pity.

Pity: "the feeling of sorrow and compassion caused by the suffering and misfortunes of others"

I have a whole new relationship with these words.  It frustrates me in a way that I have never felt, but I am sure I am not alone.  I feel upset with myself for letting such a small word take me over and make a huge impact.  A negative impact at that. I feel so badly for all of those times I myself gave way to that feeling when I met someone who had a child or family member who was experiencing a less than perfect situation.  Now I am the person and family member on the receiving end.  I hate to impose my emotions on others, but many of us (if not all?) who find ourselves in a position listed above, or any other position that others might feel warrants this emotion....do not want or need your pity.

I can spot the look from across the room when a persons glance lingers a second longer.  I can feel it in the air when someone walks over to the stroller and attempts to interact with my daughter who does not even acknowledge this persons presence.  I can read it on the faces of the stranger who overhears my conversations with others as the conversation shifts to talks of seizures and development.  It is all around me and it is impossible to escape.

I understand the situation can become uncomfortable fairly quickly when someone realizes that Sonzee has epilepsy, a developmental delay, and is unable to eat by mouth.  Yes, it absolutely sucks that this was all caused by a random de novo, no one person is responsible type of genetic mutation.  I know the typical response is the stoned face expression followed by various questions about whether the seizures can be cured or if she will grow up to have the same cognitive abilities as typical children.  I can handle the conversational dialogue and in fact I encourage questions and love to talk about everything CDKL5.  But please hold the pity.

Awareness.  That is what I hope to impart on others.  I want others to learn that people are different for various reasons, and a good majority of the time it occurs due to random circumstances.  I want others to not feel embarrassed to ask why Sonzee has a sticker holding a tube on her face.  I want someone to question why I am unfolding a stroller from the trunk of my car that is parked in a handicapped parking space.  I want people to ask why I have a light up blinking toy in the water at her swim class.  I want to provide education.  I do not want people to assume anything.

What I really do not ever want is for others to feel sorry for me, for Sonzee, or for our family.  There is no reason to feel this way.  Everyone has challenges and misfortunes in their lives.  No one is exempt from tragedy.  Yes, the circumstances are unfortunate, and I wish my daughter was a typical almost 20 month old toddler capable of doing typical 20 month old toddler activities, but that is not the case.  Please do not ever feel sorry for us.  Please continue to ask questions, tell Sonzee's story, offer support and a shoulder to cry on when the days get overbearing, and do your best to be there to celebrate with us when the days are amazing.

What to do...

Sometimes I feel like I am stuck in the movie Groundhog Day with Bill Murray, reliving the same situations and having to answer the same questions and hoping if we do it correctly we can wake up to a new beginning.  Well, today Sonzee is 17 months old and after 16 months of making decisions, we clearly haven't picked the magic solution because here we find ourselves again with the pro and con list out weighing our options and figuring out the best course of action in terms of the best medication for the bear.

Sonzee's seizures are picking up.  We are up to about two to three a day.  They are lasting around 3-5 minutes.  We still debate on administering her rescue medication for a multitude of reasons that would probably be better off saving for its own post.  Afterwards she sometimes sleeps it off and then is in better spirits when she wakes up.  The seizures aren't currently interfering too much with her every day activities so we have just been riding this out, hoping they go away on their own.  (To this, I would insert the emoji who is contemplating things with the hand up to its face because I really should know better by now).  I have figured out that Sonzee knows when a seizure is on the way (we assume she gets an aura) because she has a distinct whimper that occurs anywhere from 5-15 minutes prior and always goes away once the seizure comes.  I wish I were as good at pinpointing the triggers.

So here we are again, with things coming full circle and us left to decide what to do.  Our antiepileptic drug options are down to two out of eleven.  Neither of which Sam or I really want to try, but they are the best of "all evils".  One medication Lamotrigine (Lamictal) (you can read all the fun this drug brings here), takes approximately 4 months to reach a therapeutic dose and can have a side effect of a deadly rash, BUT if the drug works, it is supposedly amazing.  The other option is Vigabitrin (Sabril), which can cause blindness.  Both of the side effects mentioned are extremely rare, and with close monitoring, can be caught early on.  Then again, the odds of Sonzee being born with a mutation on her CDKL5 gene were also rare.  Both of these drugs have been/are being taken by at least one other child with CDKL5 who have not had a negative reaction.

We know Keppra does absolutely nothing for little bear, and there is really no reason to keep her on something that isn't helping, but with the side effect of irritability, so benign in comparison, it is really scary to make a switch.  What if we just let her go medication free?  Well Sam was a huge advocate of this before she started to have seizures again, and me, well the though of her being without any type of seizure medication is extremely scary and something that I am unable to handle psychologically.  The one thing we both agree on currently is that she does need some sort of medication, one that won't impact her personality (too much) or hinder her development.  We could rely solely on the CBD oil, but that would need to show us a little bit more control for us to put all our eggs in that basket.

I wish there was a blinking sign indicating "THIS IS THE BEST CHOICE".  I wish there would be a sign indicating an answer that would not leave my stomach in knots and the thoughts in my mind running in circles.  However, what I have learned is that will never be the case, so we will just have to "make the best decision based on the information we are given".  Fantastic.

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Words

On Friday while Sonya's brother was at camp, the girls and I went grocery shopping.  I had Sonya in the baby ktan and her sisters were in the cozy coupe shopping cart.  We made it a solid 15 minutes before Sonya started screaming and the girls began invading each other's territories with their limbs causing one or both to whine continuously until I threatened to remove one and make her walk.

By the time I made it to the checkout counter I had already lost what little patience I began with and had dialed Sam twice (he luckily did not answer) to tell him with screaming baby in full force, this is the exact reason I do not like to go grocery shopping.  I pushed my cart into the line behind another mom who's children were also in the cozy coupe.  She of course turned around and gave me a pity smile (yes Sonya was still screaming), saw the girls, and matter of factly said "oh do you have your hands full"..."I remember those days".  

I did my typical smirk and shrug response to that statement, but gave Sonya a quick kiss on the head and thought to myself "if only you knew".  Normally little statements like these do not bother me, but lately when someone says something  "innocent" it holds a deeper meaning.  Truth be told if I had only had Sonya with me she wouldn't have said it.  Does that mean a mom with one child doesn't have her hands full?  They are just words, just a social nicety. 

I know this woman meant nothing by her words other than to acknowlege "hey, we have all been there, we've all had the screaming kiddo and this too shall pass".  Similar to the kind grandma and older man that Sam and I encountered on two separate occasions stating that we should enjoy the moments now because in a blink the kids will be 18 and moving out of the house...if only they knew.

Having Sonya has definitely made me more aware of others in regards to giving that extra thought before I speak.  It is not to say I walk on eggshells before I say something, but I try and be extra sensitive to others situations.  Nothing stings more than asking a mom when she'll have more kids when she is secretly battling secondary infertility.  Or asking a mom how many kids she has when she has just buried one.  These are both examples where unless you know these people on another level you wouldn't be privy to their struggles.  

Sam and I like to pull the positives, we like to embrace the good times.  We like to "brag" about Sonya's accomplishments because she is doing amazing.   I don't like to write about her seizure activity or what she is not able to do.  I do not fault those who say the "innocent" phrases, I know looking at Sonya gives a false sense of "normal".  I guess that's what makes it sting more.  The assumption that "maybe the doctors got it wrong" or "maybe it won't be as bad as you think".  But, no they didn't, and yes it will be.