Monday, January 20, 2020


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


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