Able

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

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

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

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

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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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Revelation

"You can't change the outcome, but you will never get the time back"-Raquel Schnitzer

There have been a lot of different things going on lately, none of which I have any control over, and  naturally that sends my brain into a tailspin.  The fear of the unknown tends to paralyze me in a way that makes me over analyze and panic about every little thing.  No matter what I do it is nearly impossible for me to stay focused in the moment and actually be present because I am dreading what might be.  I dislike the feeling immensely, but also have found it an insurmountable task to focus on anything but, until yesterday.

Yesterday was mother's day.  A day that I have been honoring for myself since 2010 when our first daughter was born.  So much has happened to make me the mom that I currently am over these past 8 years.  Yesterday standing outside a Starbucks after painting pottery Sam took this picture.

I studied this picture over and over, and the quote above struck me like a lightning bolt.  Whatever "big picture" outcome is going to unfold in the lives of my children or myself I will never have a say.  As hard a pill that is to swallow, I cannot do anything about it.  I can assist with the twists and turns, but if I spend all my time and energy worrying about where the roads will lead I am going to miss the entire point and joy of this life.  Eventually the answers to all the questions will be given.  They may or may not be the ones I want, but in the end, what will matter is what we all did together and the fun times we had in the process.  

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Handling it...

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

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

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



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Weather

We woke up this morning to a gloomy sky and then some morning rain.  I love that the high today will be 74, which beats the 104 it is supposed to get to over the weekend.  Sonzee was up early this morning whimpering and uncomfortable.  She has been back at this routine for more than couple of days now. The catch 22 of her body ridding itself of Onfi is the fact that she is either more aware of her discomforts or now able to express them.  On the one hand it is so disheartening, but on the other, at least she can communicate with us.  Sadly, it does not put her in a much better position because we are still at a loss on how to help her.

It had been so long since she was in routine apparent discomfort, we were not sure why she stopped complaining, so we let it go.  We were fighting bigger battles trying to get her seizures under some sort of control, which continues to seem pointless, but it gives me something to do.  The seizures I know are an endless battle, the GI issues I feel should have some sort of resolve, yet the hamster wheel continues to spin, and we continue to get nowhere.  It is difficult to decipher if the seizures are causing the GI issues or vice versa, the two are so closely intertwined, we are playing another version of "which came first, the chicken or the egg?" and nothing we try seems to help either.

I feel like Sonzee's challenges are like the rain we had this morning, and weather in general.  They come down hard and unforgiving for a period and then they slowly get worked on, but not completely because there will be sprinkles for some time after.  Then eventually the skies will clear, and the sun will shine brightly, and we will enjoy those days for however long they last.  But the rain will become more frequent until monsoon season is in full force and we will do our best to stay dry.

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