Lifetime

As parents, we do our best to soak in every moment we have with our children and make sure to give them as many experiences that we can possibly offer.  Mainly because they are only little once and because the years fly by so quickly, but deep down there is the fact that tomorrow isn't guaranteed for anyone. We provide them with social opportunities, enroll them in extracurricular activities, take them on trips, and try to provide the most caring and loving environment to foster a lifetime of happiness.  No matter the type of child being parented, the situations may need to be adapted, but any loving parent will do their utmost to fill those first 18 or so years of their child's life with what they feel is the best for them.  In return, the payoff is watching your child grow older while developing their own sense of self and eventually one day moving on to do the very same with a family of their own.

Unfortunately, as Sam and I as well as too many other parents to list have learned, sometimes the typical way of life just isn't what is meant for everyone.  The typical parenting experience is derailed and you learn to adjust the opportunities that are provided, but always, the opportunities are provided, always the love is given, and always you watch your child develop their own sense of self in a different sort of way.  It isn't always clearly communicated, it takes a lot of guesswork and supports, but, your child is still the person he or she is as an individual, but one who just requires some level of assistance.  Regardless, you spend your moments with them the same you would as any parent, loving on them, kissing them, talking to them, playing with them...simply, parenting them.

But then there are special situations.  The ones that are unfathomable, the ones that aren't at all able to be processed because they simply don't make sense.  They are the situations that result in an ending that defies the order of operations.  Sometimes, if you are lucky you get a warning, and you get to prepare, whatever that really means.  You quickly make sure to squeeze years of moments into the shortest time possible.  You spend all your time thinking of every memory you might regret not having because you know you aren't ever going to have the chance again to get to them and you find a way of making it actually happen.  You spend all of your time loving on them, hugging them, and kissing them, but all the while wondering, how on earth you are going to get enough to last the rest of your lifetime.

"Strength"

I dreamed of becoming a mom for as long as I can remember, and when it first happened in 2010 it was the start of something that surpassed any dreams I ever had.  I have theoretically become a mom 5 different times.  Each of my children is as individual as can be making my mommying experience equally as distinct.  From being a competitive dance mom to a hockey mom to a free spirited child mom to a special needs mom, and a slew of other descriptive titled moms in between.  I am and will always be proud of all of the different mom titles I wear, however, the one no one ever thinks they will ever earn, the one no one ever wants and yet the one that I am soon to be awarded is that of the grief-stricken bereaved mom. 

It was suggested to us that we begin to make plans at this point so that any decisions that can be, will be made in advance.  For everyone who has said "you are so strong", or "you are incredible", I hand you back those words, medals, and sashes.  Yesterday, I was not equipped with the appropriate amount of strength to get me to go "cemetery hopping".  Instead, it was my amazing sister who graciously volunteered without even being asked and Sam.  I gave my "requests" and they did their best to make sure they will come to fruition.  I say requests like these things have been sitting in my mind for a lengthy amount of time, but the truth is I didn't even know I even had them more than 24 hours ago. 

Watching my child suffer over the last 4 years 11 months and 16 days of her life has drained so much of me mentally and physically, I think my strength quota has been reached.  The last 4 years 11 months and 16 days apparently isn't going to earn me much reprieve in how the remainder of this story is going to be written.  There is not going to be any first day of kindergarten picture or any sassy turning away when she wants nothing to do with us.  There is not going to be any more "hooray for Sonzee's" or cheering over some almost met inchstone.  While I am extremely grateful we are getting to segway into this new chapter on our little bear's own terms when she is ready, everything our family has endured with her isn't earning us an alternative ending, so whatever strength might remain after all of this is said and done, I am going to need to write my own.

Just wish....

Sam's first car when we met was a 2001 Honda Accord. It was 2 door, greyish-silver, and had an Israeli flag bumper sticker on the back right side.   He was so in love with this car, although I had a different opinion.  The car had so many different issues, the timing belts needed to be changed, the spark plug wasn't doing its thing and then the radiator started to overheat.  He would try these little cheap fixes and I would tell him he was wasting his time because he was eventually going to need to get rid of it.  After we got engaged and we agreed to move to Arizona, he mentioned he was going to drive that little car 1300+ miles across the country.  I laughed so hard while I told him there was no way that his favorite car was going to make the journey.  He disagreed.

By Spring of 2008, he finally decided he should take the car to the nearest dealership, which was about 40 minutes away in Valdosta Georgia.  So together we got into the car and started to drive.  About halfway into the trip the car began to smoke.  We pulled over and the radiator (again) needed to cool off.  He was so used to "fixing" the radiator, so it came as second nature.  While I sat on the side of the road he got a ride from a nice older lady to the nearest gas station to get some water.  When he returned, he poured the water on the radiator, it cooled off and we continued on our way.  It was finally time, Sam knew it was time, he still would have rather held onto the car, but he did admit it was time, and so he let it go.

I couldn't sleep last night, and at 3am I laid starring at the ceiling when this story popped into the forefront of my mind.  So many similarities from this experience, however, instead of a car, it is our little Sonzee bear.  Her entire life we have spent trying to put putty in all the water holes that have presented themselves, albeit never fully successfully.  Eventually, you realize and accept there really is nothing that you can do to try and fix the problems.  No amount of interventions can compete with the fact that her body is telling us it is tired.  It is not in the, I need to lay down and take a nap type of presentation of tired.   But in the "I cannot regulate any of my bodily systems appropriately for things to function" manner.  It is beyond devastating and really impossible to have to accept that there really is nothing left for us to do, we really have done everything for her.  So, what is left for us to do, is to respect what her body is telling us, respect what she is communicating to us and respect this process as horribly painful as that really is.  So to summarize the only way I know how, I give honor to one of the famous quotes from Steel Magnolias, "We should handle it the best way we know how and get on with it. That's what my mind says, I just wish somebody would explain it to my heart."

The Same

We are a month and 5 days away from Sonzee turning 5.  I really am trying my best to focus on the sheer fact that she will be turning five, that she is here to celebrate such a milestone; but the human side of me says that still is not enough.  It is honestly just not enough to be celebrating a milestone that I am not even sure she realizes is occurring.  The doubt in that fact alone is enough to bring tears into my eyes.  Watching her seize and sleep her days away otherwise is enough to release the tears straight down my face.  It just isn't fair.

We are a month and 5 days away from our youngest being officially more than 2.5 years younger chronologically from Sonzee, but developmentally 2 years more advanced than she will ever be, with an ever-growing gap as each day passes.  It hurts. It hurts in such an incredibly unexpected way.  Watching him as he gains every little skill.  As he speaks more words each day.   With each and every smile he flashes my way.  With every gentle pat and snuggle he gives her and concern he extends toward his bigger sister.  It just isn't how the roles are supposed to be.

I sometimes wonder if I will ever really wrap my head around the fact that this is the life she is destined to live.  I wonder if I will ever truly be able to accept that this is how it is supposed to be.  I wonder if I will one day truly believe she really is who she is and it was a purposeful genetic mistake, or rather not even really a mistake.  I wonder if I will ever be able to give up on what I still honestly secretly wish she could achieve, and the dreams of normalcy I wish her to have.  I wonder if there is ever going to be a way that I can look at her siblings and not have a cloud dampen it because Sonzee isn't or won't be able to do xyz.  The minutes and hours are ticking by.  The days are going by faster than I can keep up.  The years are speeding by at a rate I feel I am not even able to process, but Sonzee, she always stays the same. 

Karaoke

Sonzee's older siblings always love to put on shows, so when it came time for me to complete their wish lists for Chanuka Angels gifts it was a no brainer to include a karaoke machine and karaoke microphone.  The box of the karaoke machine came unwrapped and our middle daughter knew it was for her because it was in her pile, so she has been eagerly anticipating opening the actual box.  Our son who really didn't know everything that I requested for him was eyeing a specifically shaped box in anticipation of it being a microphone, thankfully it worked out for the best when he opened his gifts.  Sonzee did get a really awesome spinning light wand from her aunt that would be totally awesome to use during their shows, but as usual, despite our best efforts, she was unphased and indifferent to her gifts.

I usually keep Sonzee's gifts limited to things she actually needs, such as clothing, backpacks, pacifiers, or pacifier clips.  She doesn't show any reaction towards anything she is given, and honestly, she doesn't seem to even be aware that she on the receiving end of a gift.  It is probably more a protective mechanism for myself that I limit the types of gifts she receives because there is no excitement, no reaction, really, there is no awareness at all.  From a parent's perspective, it is really sad because the best part of having your child open a gift is their initial reaction.  Due to the safeguards I have in place and the fact that we are blessed with four other kiddos, I didn't find it difficult to handle the gift opening portion last night on the first night of Chanukah but then we started family karaoke and I have yet to find the solution to the unplanned emotional situations that inevitably occur.

The karaoke machine was hooked up to the TV, the microphones were connected, the lyrics were on the screen, red, blue, green, and white disco lights were spinning in a darkened room, and the music was blasting.  We might as well have been called club Zaila, it was the best.  I started to record the kids singing at the top of their lungs and then panned across the room until I got to Sonzee who was just laying in her ppod not participating.  A mixture of exhausted from her recent seizure, the multiple other ones she had throughout the day, and just CDKL5 in general.  She didn't care for the disco lights going, she wouldn't even look at the awesome spinning wand her aunt gave her.  She was just blah.  I felt the tears enter into my eyes, but I immediately pushed them away.  I didn't feel like letting CDKL5 steal another moment.  It was much more fun to focus on my older three dancing while they sang at the top of their lungs, so I flipped my emotional switch to off and pushed the pain away.  Always on the tight rope of acceptance and hope of something.  While I fully accept who she is as a person, I still hold onto some hope that maybe tonight she will want to look at her amazing spinning light-up princess wand when we turn back into club Zaila.   

The plan

I have always been a planner.  I surprise myself sometimes with my ability to continue planning, even though so many times over the last close to 5 years my planning has not yielded the same outcomes as I had anticipated.  I have learned planning is just one component and not even necessarily the most important part, it is the execution of those plans that almost weigh more than all of the preparation, and sometimes even though the plan is in plain sight and you can clearly see the words written out in front of you, your specific desire for the situation to unfold in the manner you thought, isn't always in the cards.

April 16, 2015, was the day that reality shifted, all of our parenting plans as we knew them, changed.  It was the day that I learned you could breathe but your lungs might not fill up with air.  It was the day that I learned that rare can happen to anyone and when it does, it doesn't feel very rare at all.  It was a day that time simultaneously stood still and flew by all at once.  It was the day despite being married 6.5 years already that I would first see Sam cry not because of a birth of one of our children, but because his world was crumbling around him.  There was nothing we could do but once we collected ourselves we made a new plan.

Had you asked me 4.5 years ago, I would have said the first death amongst my non-special needs framily would have been Sonzee.  The plan was Sam and I sitting shiva first because she had passed.  It was supposed to be our friends navigating how shiva worked and things to do.  I never entertained that one of my closest friends would have had to suffer the loss of her mother first, and I certainly never imagined any of Sonzee's grandparents passing first.  Logically I know that is how it is supposed to be, but that wasn't part of the current plan.  It's true you just never know what can happen, and for the last week and a half, I have been wondering why Sam's dad passed.  His soul's mission had clearly been accomplished and his purpose on earth fulfilled, yet none of us here will be privy to the real answer.  What peace I have gathered in my mind over it all is that someone needs to be waiting for Sonzee when it's her turn, and I know when her turn comes, he will be waiting with a cigarette in hand, open arms, on a bent knee and a huge smile on his face...at least that is the plan.

We all have...

Over the past few months, I have been fortunate to get closer to various women and have some rather intimate conversations.  They aren't just about Sonzee, they aren't only about special needs children, the subject matter varies depending on the person, and there is always discussion regarding a personal struggle.  I didn't need these conversations to know that everyone struggles in their own way, but they are always an incredible reminder of all the struggles that every single person has to deal with.  That part is double-edged because there shouldn't be such intense struggling for people to have to endure, but it is good for us all to keep in mind we all have to deal with less than ideal situations all the time.

So often I am told that I am so strong for dealing with what I have to, but I wonder how many of those people who say that to me realize they are the same strong for dealing with what they might not have even shared with me.  No one can begin to understand the exact struggle of another person because it isn't theirs to own.  It isn't one they have to understand inside and out.  It isn't one they wish upon anyone else.  It isn't one they even know how they are going to handle themselves.  But since IT was the struggle they were given, they will HAVE no other choice but to be strong and tackle it day in and day out.

To quote one of these amazing ladies, because it sums it up perfectly, "we all have our Sonzee's".