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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Eighteen Months

My dearest Sonzee Bear, 

I do not even know how to begin this letter to you.  As I sit here the rain is pounding on the skylight, you and your siblings are sleeping, and your father is out at ice hockey.  I have so many emotions running through me right now I do not even know where to begin.  This has been a prominent occurrence during the past 18 months of your life.  I find myself constantly straddling two worlds simultaneously, the one where I am fighting back the tears because of sadness, and the one where I am fighting back the tears because of happiness.  One thing seems for certain, there are always tears.

In one more hour it will be exactly 18 months since I first ignored the signs that you would be making your debut 2 weeks prior to your due date.  A day after the day your father joked that you would be arriving.  In true Sonzee fashion, you had your own agenda planned.  Luckily, for the both of us, you did not make me wait long once you decided it was time.  In just 8 hours, it will be 18 months since I first held you in my arms.  18 months since you made us a family of six, a family of four girls and two boys.  18 months since our lives became part of a storm, similar to the one that is going on outside.  So much has changed since those first moments, yet so much has remained the same.

Since your arrival I have received many new titles; a mom of 4 beautiful children, a NICU mom, a mom of a child with epilepsy, a mom of a child with a CDKL5 mutation, a mom of a special needs child.  I embrace my positions with a smile, but sometimes they mask the pain that I feel for your suffering.  While I am thankful that we are celebrating this momentous occasion with you in our presence, it pains me exponentially that undoubtedly you will have at least one seizure today and you will struggle to communicate your wants and needs.  This day of celebration is clouded with the fact that you will be in pain in some form or another and just like every day for the past 18 months, there is nothing I can do for you to make it go away.

I have been waiting in anticipation for this day as I did with your siblings.  You of course have a specific outfit that was purchased with your personality in mind.  I had distant dreams of the accomplishments you might have achieved, but thankfully, I always keep the backdrop blurry so that you never feel like you have let us down.  I push you like I do your siblings, and while there are days that I am frustrated with the situation, I want you to know that you could never disappoint me.  I am just so thankful for your current capabilities and your consistent determination.  

These last 18 months have been so hard on me for a multitude of reasons, one of them being the constant worry that I am not honoring your wishes.  I just want you to live the life that makes you the most happy.  I sometimes wonder if that is just letting you lay on the green mat so you can roll off it 100 times while you secretly enjoy making me walk over to place you back on it.  You have such a strong fighting warrior spirit, which has become evident; as we have watched, you hover over the fine line of life and death far too many times for my liking.   

While there is no guarantee for anyone, celebrating birthday moments like this is bittersweet to me, as I live in constant fear that it will be the last.  So I apologize now (not really) for the insane amount of pictures and poses I will undoubtedly be making you participate in.  18 months is a date I was uncertain we would even reach with you a couple of months ago and yet it snuck up on me so quickly.  These last 18 months have been one big contradiction; I cannot believe how a year and a half has flown by and dragged on all at the same time. 

Thank you my little bear for helping me work on my patience, and for giving me strength I did not know existed.  Thank you for helping me find my voice and making me a better parent.  Thank you for helping me unlock a hidden desire and passion of writing, that without you would never have come to fruition.  Thank you for brightening my day with your crooked adorable wide mouth smile (when you are in the mood to do one).  Thank you for allowing me to hear your sweet little voice and even your not so sweet and loud cries.  Thank you for being a great teacher and student to your siblings who love you so so very much.  Most importantly, thank you for being YOU.

I hope and pray that these next days, weeks, months, and years of your life will be filled with more joys and accomplishments than seizures, pain, and sadness.  I wish for you many more "ema made" celebrations so we can see your cuteness as you are forced to wear ridiculous customized outfits that bring me so much joy and happiness.  I hope you have an idea of how much you are loved by us all.  

Moreover, thank you for the past 18 months.

Love always, forever and a day, 
Ema

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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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Purpose

I have typically been a person among the group of people who have wondered why G-d has allowed unfathomable things to happen to babies and young children.  It is not to say that it is okay when adults or seniors fall ill, suffer catastrophic events or die, but as most people would agree, they have experienced "enough" life that it is more "acceptable".

I used to be on the other end of these situations; feeling a mixture of complete confusion, anger, sadness, and slight relief that it was not my child or experience.  Now, I find myself in the midst of it all.  At the center of IFSPs, routine (sometimes not) hospitalizations, a schedule worked around medications, and of course the unknown.  Yet, unlike I would have assumed I would feel, I have not (yet) found myself asking "why me?", or "what did I do to deserve this?"  I often wonder if I will as part of this process, or if I really am oddly at peace with this outcome.  

I know that G-d had a purpose when Sonya was conceived.  I know she has a responsibility far greater than us average Janes/Joes.  I actually have this odd excitement when I think how special Sonya must be to have been chosen to bear such a responsibility as she has been given.  How lucky we are that we were chosen to be her family.  

You hear this a lot from families whose children have debilitating and or terminal illnesses, and I'm sure some (if not all) of you are like how I used to be when I heard these statements, and are thinking, "Do these people really feel blessed? Are they just saying it?"

I have definitely had feelings of sadness that Sonya was chosen to be part of such a rare diagnosis.  I feel sad that she "won't be like everyone else", but when she is older and we ask her, I bet she will tell us she is really happy.  I bet she will tell us she couldn't imagine being like the majority.  She will probably have moments she wishes her life was not so difficult, but don't we all? Don't we all wish that at least for a day we could be someone else? The popular kid in school, the Olympian, the smartest kid in class, the president of the United States, the CEO of a company, the head of a Fortune 500 company? Don't we all wonder what it would be like to not be ourselves?

It would be dishonest to tell you that I don't wish I knew the purpose behind "why Sonya?" It wouldn't be truthful to say I don't sometimes have the "I wonder what it's like to have four genetically unaltered kiddos" feeling while scrolling through Facebook.  But then I look at Sonya and I love all the lessons she has taught me already in her short time with our family.  I love how much I am going to learn from her.  I love how much I am going to grow because of her, how much her siblings will be better because of her. 

I do whole heartedly believe G-d knows what he is doing.  We may not understand the reasoning because we aren't privy to flipping the pages of the book to the last chapter to find out the ending.  We just get to be characters that help make the story come to life, one chapter at a time.  Maybe one day we will know what G-d's purpose was, but then ask yourself this; would it really even matter?