Friday, January 31, 2020

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.


The Mighty Contributor

Wednesday, January 29, 2020

"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.


The Mighty Contributor

Monday, January 27, 2020

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 Mighty Contributor

Monday, January 20, 2020

Paths

Life in general with CDKL5 has always been a path filled with bumps, forks, and a multitude of signs all suggesting various ways to go, but ultimately no matter how the path is followed, the final destination will be the same.  In our house, we have two decision-makers, which means two people who despite sitting in a coffee shop on their first date laying it all out on the table discussing their individual fundamental beliefs, didn't quite get into the depths of the now relevant and extremely pertinent core discussions that have ultimately presented themselves over the last almost 5 years.  I mean in our defense, who even knows CDKL5 or unhealthy babies are even topics of considerations that exist when you are young and dating?  Who knew topics similar to "what are your viewpoints on abortion" really were benign compared to a lot of the line items that were in our unknown future?  Who knew that two people who I remember sharing the same beliefs with at one point could have completely different ideas of what "the best path" would ultimately be?  I often wonder if the experience of the actual decision making of the medically complex child path in other families is similar to how it is in our house; with two completely different viewpoints and opinions but ultimately two people wanting the best for their child while trying to honor eaches individual convictions all the while trying not to become another statistic of a failed marriage due to the additional challenges of living a medically complex life.

Ultimately, I wonder, are there really right or wrong deviations and decisions when it comes to walking the path?  I have read all these various quotes about paths and journeys.  Some suggest there are no linear ways of getting to the endpoint and that every path has multiple curves.  Others suggest no matter what the path, there is beauty in getting lost on the journey.  There is even a quote suggesting that there is no one correct path just the path that you choose.   However, the challenge in these cases is there are two you's. So which one is correct?  How do both people compromise on the journey itself when the simple concept of 50/50 means half full to one of them and half-empty to the other?  The same information presented is perceived in two entirely different ways, but supposedly, neither of them is wrong.  

I won't ever understand why it was Sonzee who was born with a mutated CDKL5 gene, or why there are many layers of complexity to her journey that have resulted in so many opportunities for us to have to be faced with not only typical married life drama, but the additional elements of how do we give our child the best quality of life while weighing our personal opinions on whether or not we perceive her as suffering and what to do or not to do if there is even anything to do about it.  In the end, I suppose there really is not a right or wrong when it comes to the journey itself, but what does seem to matter and what the biggest challenge seems to be, is being able to continue moving forward making decisions that are true to your own personal beliefs while trying to balance the fact that there is "no I in team"

The Mighty Contributor

Thursday, January 9, 2020

Crumbs

When my oldest was 16 months old I enrolled her in a gymnastics class in north Phoenix.  At the time I was 8ish months pregnant with her brother.  We began going on dates after her gymnastics class to a local coffee shop.  She got her cookie and chocolate milk and I, of course, some form of coffee.  When her brother was born he tagged along, first in a carrier, and soon as a member of our special time.  Eventually, my older two began preschool and my dates became with our 3rd and Sonzee in tow in the carrier or stroller.  3 years ago when our middle daughter began school, the dates stopped.  Sonzee wasn’t enrolled in gymnastics and while I could have taken her to a coffee place and drank coffee with her in her stroller, it just wouldn’t have been the same.

When our youngest became enrolled in gymnastics this past fall I was looking forward to having our dates.  It had been a while since I had a date with a toddler and I was so ready to start them back up.  Fast forward to this morning.  We have about an hour and 10 minutes between the end of gymnastics and getting sonzee from school, and boss baby is finally at the perfect age to have his attention focus on a cookie and chocolate milk for more than 5 minutes in a chair, so off we went on our date.  I snapped pictures, he picked out his chair, I was so excited to be sitting there with him, and he appeared to feel the same excitement.  Then I saw the crumbs.  Little tiny toddler crumbs on the table, on the chair, on the floor, just staring at me so I grabbed a napkin to wipe them up and then this emotional tidal wave washed over me.  Crumbs...the same ones I used to apologize for when we went to this same coffee location with my older kiddos and they were all over the place.  The same crumbs the employees used to smile off at me and say “don’t worry about it”, while they grabbed a broom and swept them up.  The crumbs that toddlers make but ones that Sonzee has never gotten to make.  Cue to the tears.

Now with glossy tear-filled eyes, staring at my son trying to not let the tears fall as I was wiping up crumbs in a coffee shop while trying to get over the emotions quick enough to enjoy the moment of actually being on a date.  So many more of these moments keep happening.  It's always dual-edged, the same thing I am not taking for granted fills me with dread because Sonzee couldn't or cannot do it.  The pain of it continues to get worse for some reason the older she gets.  Sure she can unhook her feeding tube and her stomach drainage and make a wet mess, but the reality is, she cannot and won't ever be able to make any crumbs.

The Mighty Contributor

Monday, January 6, 2020

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. 

The Mighty Contributor

Sonzee's Slideshow