I thought possibly as time went on that I would get over it, maybe even get used to it, or that it would become easier. It didn't, it hasn't, and I realize it won't. At 9am this morning I had already given Sonzee a loading dose of Keppra and while that broke the cluster of spasms she had been having for 20 minutes, an hour and a half later she had another 11-minute seizure. This is just part of the severe form of intractable epilepsy that comes with CDKL5. I sometimes wonder what good it is to have received her CDKL5 diagnosis when all it is did was bring us a reason as to why she was having seizures, but no solution on how to make it end.
11 days now remain until the anniversary of diagnosis day, yet not a day has gone by since the official day that I don't have some type of flashback or vivid memory of that specific day. I suppose the day doesn't even need to be acknowledged on its own because we live the representation of CDKL5 every single day. For some reason, though I cannot get over the significance of that day. I have the quote "what a difference a day makes" written above significant happier dates our family has experienced and inside a frame in the playroom. I wonder about the difference we would be experiencing had April 16, 2015 not lead us to the knowledge of CDKL5.