Wednesday, April 27, 2016


There have been plenty of moments along this journey that have left my face hurt from the amount of smiling that has occurred.  Genuine happy smiles brought about from being an extremely proud mom.  The times that definitely involve me grabbing Sonzee, squeezing her so tightly, and planting hundreds of thousands of kisses on her yummy yummy cheeks in a celebratory manner.  These types of moments are thrown in sporadically, and sometimes if we are lucky, they can last longer than a blink of the eye.  I like to think of these times as G-d's way of saying..."Hang on Randi, I haven't forgotten about Sonzee".  No matter how utterly incredible these moments are there are challenges that coincide with these types of moments.  

On the positive side they are a blessing in their impeccable timing, typically occurring around the more challenging times.  The times when I feel we are at the bottom of the coaster.  The times when I feel a little lost and insecure about her development.  The times I feel like she is only child with CDKL5 not accomplishing any goals.  These moments serve as a necessary pick-me-up granting me motivation and inspiration to tackle what is next along this pebbled path.  I cherish these moments in a manner that as usual for me, is difficult to articulate.  I feel almost swollen with joy and pride.  These times essentially wipe the slate clean and mark a new beginning for Sonzee's story.  

Then there is the dreaded negative side.  The side that most people do not want to admit exists, but we all know does.  A horrible effect of these moments is that they are also a huge slap in the face.  They are a stark reminder that even with the most optimistic parenting in the world, a life with CDKL5 can realistically only bring moments of euphoria.  It is a reminder that these joyous moments are unfortunately not our normal.  They are rare enough that they have taught me to actually appreciate them in a manner I never knew was possible just a year ago.  These moments represent that at any moment the elated cloud 9 unbelievably happy; heart stirring, overwhelming, spine tingling moment can simply be popped like a latex balloon (my least favorite and most feared item).

While there is something to be said for living in the moment, it is definitely not always rainbows and butterflies.  In the past year, I have really learned to understand what it truly means to "live in the moment".  All you really have is a single moment to feel whatever emotion is present, because in a split second it is gone; the moment is gone, the thoughts you have are gone, and the feeling you are experiencing is gone.  The easiest part of "living in the moment" is saying the phrase.  The more difficult part of "living in the moment" is carrying out the action.  The most arduous part, that I am still struggling to master, is truly embracing the moment without fearing what is to come following the moments end.  

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