Often times my posts are written in my head while I am out and about as the random thoughts filter through my mind. Some of the time I actually find myself smirking realizing all of the craziness that is occurring in my head during that time. It is completely baffling to me how one minute I am "worried" about Sonzee's developmental milestone achievement and then a moment later her milestones are the most distant thoughts as I am overwhelmed with happiness that she is just breathing and we aren't at the top of the coaster looking at the end of the track.
This honestly happens multiple times throughout my day. Thoughts that contradict themselves bombard my brain and confuse me to the nth degree. To give it a visual representation, imagine that you are standing in a dark room and there are thousands of words flying at you from all angles. Some of the words are huge, others are tiny, but all of them are white and bright. They go by so quickly it can be hard to make out what they say. It makes processing what I really feel an extremely daunting task. I have to yell at myself to focus if I want to make any sense out of the situation. Then I start to dissect my thoughts. "Should I think this?" "Shouldn't I just be happy with where things are?" "There are other children worse off. She has been worse off." Etc. Etc. Etc.
It is when things are seemingly stable that I am less afraid to admit to myself that I wish my 20 month old would be able to sit on her own. I know I am allowed to acknowledge this feeling, and I know it is acceptable, but I feel petty a lot of the time for caring about her accomplishing milestones. For each thought that pops into my mind, its counterpart is right there by its side. "I wish she would not succumb to the typical stereotypies and sensory issues of having a CDKL5 disorder, such as hand chewing." (That really is so benign, why does it bother me?) "I wish she would bear weight on her legs", (they are getting stronger). "I wish she would notice me when I look at her face", (but if I make noise she does). "I wish she would show her siblings that she loves them", (On occasions when our oldest plays with her arms and talks to her excitedly, Sonzee gives her the biggest grin). My mind is constantly playing devil’s advocate with itself. The reality of this life and the guilt for feeling unsatisfied at times are so intertwined with one another.
I want her to just be normal, but I want her to be who she is meant to be. I really do not have any specific expectations when it comes to what Sonzee will achieve in her lifetime. We meet every 6 months to create goals for her and most of the time we just keep them the same because they have not been met. I have hopes and dreams galore, but who knows when or if they will be accomplished. I do not want her to ever feel like she has let me down nor do I want to place unnecessary pressure on her, and I want what any parent wants from their child...for her to grow up and be happy. It is annoying to me that every single aspect of her life has to be so complicated.
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