Today I feel like an emotional basket case! I haven’t blogged in a while and it’s not for lack of wanting to it’s because I didn’t and still don’t quite know how to express what I’m feeling! There’s so much going on in my personal life and I tend to have a hard time separating my feelings into categories! Family… check! Epilepsy… check, check! Instead they all mull around in my brain and make me feel overwhelmed and a tad over emotional!
Meghan has been doing great all things considered! I know I’ve mentioned to some of you about the remedial reading course she’s taking in order to be promoted to 4th grade. She loves her teacher and she seems to be progressing nicely! My only worry is they don’t have a nurse on staff or someone who can administer diazepam if she were to need it. Luckily we live literally less than a block away from the school where the class is being offered! Not that it makes it any easier, I stress about it constantly, but I can get there in about a min if anything were to happen! I am definitely going to approach the school board about making sure someone is available for those programs in the future.
Last week Meg had another seizure! It was upon waking and started out with the usual swallowing episodes, but quickly turned to what sounded like choking and she started to turn blue. I know these things have a tendency to go hand in hand with seizures, but it didn’t make it any easier to watch. I’m used to dealing with focal seizures that progress into leg and arm twitching, her blank stare, random noises, but the last few she’s had are much more violent with thrashing, tongue biting, choking sounds and it kills me! I know she doesn’t remember them, but I can’t seem get them out of my head and I’m petrified. I’m scared to death of SUDEP and the seizures not stopping! I feel like lately I’ve been in a constant state of worry and fear. Recently the doctor suggested and scheduled a PET scan and told me these are generally done to determine whether or not your child is eligible for surgery.
Surgery… another thing that scares the bejeezus out of me! Will it work? Won’t it work? How do I explain it to her? How the hell do I get through it and stay strong if she is a candidate? Will she come back to me the same way she went in? What happens if something goes wrong? What if it doesn’t work? What if it does?
STOP! Take a deep breath! You aren’t there yet! One day at a time! Stop living in the what ifs and live in the present! It’s hard to do sometimes, but I feel as though I constantly have to remind myself to do this! It feels like I’m always preparing for the worst. When we go out, in my head I’m thinking, where’s the safest place to take her if something happens so we can administer her rescue meds? What if someone tries to capture it on a cell phone?
Stress? Yeah! I feel as though I’ve come to know her quite well.
So on days like today, when Meg is at school and I feel like a complete and utter emotional nutcase, I realize I need to take a few moments to let it all out! I have to allow myself, at least for few moments, to take off the happy mask and release what I’m feeling from that box in my head labeled Place Emotions Here! It doesn’t make me weak! It doesn’t make me crazy! It doesn’t make me a bad mom! I think it allows me to process what I’m feeling and get my feelings into check so I can be level headed and taken seriously when it comes time to make decisions, meet with people or answer question. It also allows me to release all those fears and live in the present with my daughter, to laugh with her and teach her life lessons.
I’m not perfect, I’m still learning how to manage all the emotions that come along with epilepsy let alone the ones associated with just being a Mom! I can tell you I’m beautifully flawed and I say this because I know the emotions I feel come out of a place of complete and utter love for my child! I still get nervous and scared, but I’m also a fighter! I want my child to live and to succeed to the very best of her ability! I may cry and beat myself up every once in a while and I might have to learn through mistakes along the way, but I will do everything in my ability to make sure that happens.