It feels like it has been forever since I last sat down and allowed myself to take a deep breath. I decided even though I am exhausted from our final drive home, the beginning of unpacking, and the fact that it is 1:44am, I wouldn't let myself go to sleep without writing a blog post. So many thoughts popped in and out of my mind over the last couple of weeks, yet time didn't allow for me to devote more than the second to them, and I know I need to make them coherent and sort them out in and outside of my mind.
This summer has officially come to a close in terms of travel and play, albeit not so much in terms of Phoenix's 112-degree forecast. I am not fully ready to reflect on the events of summer as a whole because for the first time in Sonzee's life I feel like this summer was not actually a summer. I honestly feel in a way we were robbed of my expectations, and maybe that was my fault for even setting any. That is what I hate about CDKL5, so many plans that don't come to fruition, in their place is the life that I have minimal say and control over, and for some reason, I am still unable to relinquish the reality of that concept. Deep down I know that there is a reason for everything, that there is a purpose for everything that occurs to Sonzee and for all the experiences we have because of her, but closer to the surface it remains a constant struggle.
4.5 years in and I still cannot grasp why she needs to struggle for any potential "better good". While I am so fortunate to those who have literally become like family to us, I wish it was not at our daughters' expenses. There is no amount of life learning lessons or inspirational gain that should come at the hands of pain and suffering of Sonzee or any other child. I still have moments, like right now where I wonder why her? I still hate that this is her life and her reality. I still hate having to act like I am okay with any of it because of occasional societal pressures. I still cannot shake the pain and physical strangling feeling that has consumed my heart since first hearing and reading the letters CDKL5, and I am starting to understand that I don't think I ever will.