I know one of the harder parts of this journey is acceptance. While I have experienced brief moments where I am content with how things are, I can admit that I have not truly accepted everything CDKL5 has thrown Sonzee's way, but I don't think I ever will. Usually after watching one of Sonzee's CDKL5 siblings who is around her age celebrate the mastery of a skill that Sonzee still cannot do I tend to feel the saddest. While I am genuinely happy and excited for each of them as they meet their own inch stones, it makes a small dent in my heart and the doubts of what we are doing for her creeps in. What are we doing wrong? Are we not giving her enough therapy? Is it our fault? Could we be doing more? Should we be doing more? Will more make a difference?
This train of thought begins to wreak havoc in my mind and an internal game of devil’s advocate ensues. Even if we give her intensive therapy it won't make a miracle happen (we have tried that). If we do more therapies, she will surely excel (she seizes and then sleeps through the ones she currently has). If we pushed her she would meet her milestones (she is doing her best, she cannot beat genetics and her mutation is not a "lucky" one). She is happy and content (Is she really?) If we finally got control of her seizures that would surely help (No. It won't because even during her 5 weeks of seizure freedom that she has experienced twice in her life, she made zero gains developmentally). You are doing your best for her (No I am not because she should be able to hold a toy or sit).
Lately it feels like every CDKL5 sibling around Sonzee's age has blown past her. They are sitting, pushing to sit, rocking on all fours, crawling, bearing weight, walking with toy walkers, walking holding hands, and/or walking on their own. Maybe it just feels that way because I am feeling like it is my fault she has not moved beyond a 3-4 month developmentally. I remember when she was 4 months old and Sam and I had dreams she would be the one who would defy the CDKL5 stereotypes. She was taking part in every therapy under the sun, it didn't matter the cost, she would have it all. We bought or asked for every possible piece of equipment that might make a difference that was age appropriate. Here we are, her about to be three and I don't want to give up on her being able to sit...but even that has not happened.
I know mastered milestones do not correlate to the level of success a person has achieved in his or her life, but as a parent of a child who has hardly completed any I just feel like a huge and complete failure. I know we have tried everything we possible could to help her and I do not know how to accept that maybe she really will not ever meet any of these "basic" life skills or that there is nothing more we can do to help her complete them.
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