It has been one year today. One year since our weekend away turned into the biggest nightmare of my life. One year since Curtis went status epilepticus and my world turned upside down.
May 11, 2014
I still think about that day, and the events leading up to the moment that I realized what was happening to Curtis, nearly every day. My older kids still talk about it, still ask questions--sometimes they will still cry when remembering the events that took place. It was traumatic for the three of us, and remembering everything is hard. It's awful. When I think about it, I often think not only about Curtis, but about how my big kids were separated from me for a large chunk of that day while I was in the hospital room with Curtis and how they must have been so scared. I think about their resiliency and bravery and strength...my god, their strength! But despite all the bad memories, in some strange way, I think it has also made us all closer. My older kids now feel more protective of Curtis. And in this past year, I feel like I have caught a lot more moments like this:
So much has changed in our family in this past year. It has truly been a year of ups and downs (mostly downs, if I'm being honest). The events of that day formed a bond between the 4 of us that I think has really helped all of us get through a lot of "yucky stuff", for lack of a better term. I love that my kids have each other. I love how my big kids love their little brother. I hope they will always watch over him and take care of him.
Of course, these days Curtis usually doesn't want anyone taking care of him. He is, after all, in kindergarten. The big transition went OK, overall. There were a few hiccups here and there in the beginning, but after a few months he was settled in nicely. He has always been more than happy to be at school. In fact, he never looked back. Unfortunately, the year as a whole hasn't been a huge success. Despite increasing services throughout the year to try to hit his goals, he didn't meet them. Fine motor skills remain a big issue. I had some issues with his school team that I am hoping to resolve, as well. Between all of that, outside therapy services, and me working more with him at home, I'm hoping that things will pick up and he'll be back on track ASAP. His seizure meds are staying steady for now, so that shouldn't be an issue (they were increased halfway through the kinder year and they can make him drowsy and irritable...not fun when you are trying to learn...or ever!)
kindergarten musical performance
As for the seizures--we just don't know when or if another one will happen. In December, we think he had another (much smaller) seizure and his meds were increased. Since then, we haven't noticed anything. Curtis did go in for a 24-hour EEG as a precaution to check for "silent seizures", but while the EEG wasn't normal (it won't ever be...his neurons will always fire abnormally, I've been told in the past), it didn't show any seizure activity which is really good news! I can't even comprehend him having little seizures throughout that day or while he was sleeping. I know it happens, and that terrifies me.
Otherwise, we're going day-by-day. Just like most people with their "average" kids. Some days are good days, some not so good. Curtis' behavior changed a lot after his seizure and even one year later I still feel like I'm having a hard time adjusting. He screams a lot. He gets mad and frustrated more easily. It's stressful, but he's my little lover and, just like I tell him every night before bed, my "most favorite little boy in the whole wide world".