I know the textbook definition of CDKL5. I see older children who have this diagnosis, and they definitely follow the texts. I follow parents in the online support forum and see their children's daily real life struggles. But how am I supposed to be able to accept what the future holds when I look at Sonya and she appears to be just like most 2.5 month old little girls? From the outside she is perfect. There are no physical markers. Her eyes are the bluest blue like her oldest sister. She has fair milky white skin like her brother and father. She has the yummiest tummy and cheeks. Her hands have all 10 fingers, and her feet have all 10 toes. She has started to make little baby sounds, and she cries when she is hungry or upset. She has started to smile more....does this all just go away?
It is simply too difficult for me to accept that her fate is sealed. It is much easier to just be in denial. People might say it isn't good to be in denial. If a person is in denial they are ignoring the reality of the situation. An alcholic that is in denial won't get help, because they don't see a need to. A victim of domestic violence might deny that they are in a bad situation, so they won't seek help. Using those examples in my situation would transale to: I do not see Sonya following the textbook definitions of CDKL5 so therefore she won't.
It might take years, but Sonya WILL walk. It might take decades, but Sonya WILL speak. She WILL communicate. She WILL have some seizure control. She WILL contribute to society. So, if me being in denial makes all these possible...I guess I should just set up a tent and crawl inside.