We got home from a wedding not too long ago and everyone dropped like flies right into bed after their showers. That is everyone but me. Sonzee needed her food refilled and her TPN started, so after I took care of that I came to my computer and thought about writing a blog post. I was clicking through the years tab on the side of my screen to see how many posts I wrote in March over the years since I began blogging and then it dawned on me that in 30 minutes it will become April. My heart skipped a beat at this realization and that pesky weight in my chest that I manage to push aside resurfaced. It means in just 15 days it will have been 4 years since we first heard about CDKL5.
Diagnosis Day, is probably one of my least favorite days of the year. It is one of those anniversaries that I feel requires celebration, but yet it is a day I feel should never be honored. Such a mixed bag of emotions. I often wonder how it becomes April so quickly each year. As if 365 days manage to literally speed by just to reach April 16. It is one of those days like the birth of a child or Kindergarten graduation that you remember every detail as if it just happened yesterday. A profound day in Sonzee's journey as well as our lives that gave us answers and a weird sense of closure yet at the same time an introduction into a world full of uncertainty, fear, and heartache that we had no idea existed.
4 years ago we had no idea about the world that would soon be introduced to us. A world that was existing concurrently but yet completely oblivious to our family. A world where children were dealing with challenges we would never have even considered children would be forced to live with. And a world where parents were making decisions that no parent should ever have to consider. A world that I never dreamed existed because you don't even consider this sort of world will reveal itself to you or your family.
I think about the 4 years that have gone by and I cannot even imagine what life was like without our knowledge of CDKL5. Just 4 years ago we were strangers to the world we now only know as our world. A world that once spoke a foreign language but yet is now the only language we understand. A world that we couldn't comprehend and we weren't sure where we quite fit in, but yet the only world we now feel comfortable and understood. A world where the bonds we make with others on the same or similar journey will far surpass those that could ever be created between those who can't imagine.
Prior to April 16, 2015, I couldn't imagine, rather didn't want to imagine what CDKL5 was, or how a parent could parent a child diagnosed with something as challenging and horrific. Yet, here I am, and here we are just 15 days away from the day that changed our lives forever. While I feel grateful we didn't have to wait long to get our answer, I am still just as devastated, just as clueless, and just as broken as I was sitting in the car reading the list of items Sonzee most probably wouldn't do in her lifetime, because sadly...for us...for her...it was all true.