I gave myself a pat on the back this week after I was up in the middle of the night and looking back over the past year’s video posts that I have made on Sonzee's Facebook page. The pat came because the videos that I had posted were ones that only brought a huge smile to my face. So many, if not all of them included smiles, Sonzee-stone achievements, and happy times. While I reminded myself that there could have easily been videos posted that focused on the more negative days, those were not the ones I was watching. The problem with seeing these videos is that it brought sadness because it made me realize how much Sonzee has lost over the past year.
So many of those achievements in the videos she is no longer able or willing to do. She does not smile or laugh without great efforts, and to be honest when she does either of those, they are not for lengthy periods of time. It always takes looking back on pictures and videos to realize how much regression she has actually had. I dislike the term regression, especially because one of the main "positive selling points" of CDKL5 is that the mutation itself does not result in regression, however, the seizures do.
Living this life has and always will be filled with double edged swords. While I am grateful for having those memories documented and ready for me to watch when she is having an off day, it can be a complete punch to the gut as I am reminded of what she once could do. I wish her seizures would be a little more forgiving and happen less often. I must admit that considering the amount and severity of them on a daily basis, it is 100% astounding that she can open her eyes and be awake, much less bounce in her bouncer or try to hold her head up. I will definitely continue to celebrate each smile and moment she shares with us because it is a continuous reminder that each of these moments is so precious, may not ever happen again, and even if through the tears, they all bring such great pride and a huge smile to my face.
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