It has been almost two weeks since Presley received her diagnosis. Since then, I have spent countless hours poring over every piece of information on medical websites that her Neurologist recommended. As I've learned, I have attempted to inform others in our lives. Some have taken the information well, such as Presley's daycare. I honestly can say I really appreciate their support, understanding, and seriousness throughout all of this. But it seems like a large majority of people are not taking the information well. Maybe I am just being overly sensitive - it wouldn't be the first time. But to me it seems that certain people who should be there as part of a support system are either in denial or just don't think Presley's epilepsy needs to be talked about. I think denial is a normal part of what a person going through internally. I know it is hard for some who are very close to Presley to think about her having something wrong. Believe me, I get it. I'm her mom. I went through the denial, the guilt, the sadness, all of that. But at some point I had to acknowledge that this was real, and this was important, and Presley needs someone there for her to fight for her and be her advocate.
I understand that it is scary for others, and I understand that some may feel I am being pessimistic when I relay information about her seizures or her epilepsy, talking about her epilepsy, and creating this blog. I just want to say that isn't my intention at all. I am being realistic. The truth of the matter is that most kids do not grow out of this, most people with these types of seizures can't be helped with medication, a lot kids like Presley end up having surgery or an implant to control their seizures, it is very common for children who have seizures and are on anti-convulsant medications to need some sort of help with development through therapy, and that we may have to get a Seizure Response Dog for her when she is older. I don't want to seem pessimistic, but I also don't want to set myself up. Of course, I know these things aren't cut and dry. And it's true that not all children are affected this way. But the odds are really against her right now and I want to be there for her as a support, to help her grow as an independent individual. I want the best for her in life. I don't want to sugarcoat things for her and try to ignore the issue. I want her to be able to say as an adult, "Yes, I have epilepsy, but it doesn't define me."
I guess what I am trying to get across is, by ignoring the issue, Presley isn't getting the help and support that she needs. If you don't educate yourself on what she is dealing with, you can't really help her be the best person that we all know she can be. We all need to be a united front in helping her grow into a strong, independent adult. I am also afraid that if everyone in her life is afraid to talk about it, she will feel as if it is a shameful thing that she should hide. And I don't want that. I don't want that for her and I don't want that for any other individual who has epilepsy. That is why I am trying so hard to get the word out there. I want Presley and everyone else with epilepsy to be able to have the best life possible while living with epilepsy. I want people to be educated, so that the social stigma and the misconceptions can stop and people with epilepsy can feel like they aren't being ostracized.
Being realistic about a diagnosis of epilepsy and the types of seizures someone has, is not a bad thing. It helps us prepare for the future and best help those with epilepsy. It does not mean that my love for Presley has changed. If anything, it has made my love stronger. Every day, I thank God for her. Everyday I stare in amazement at how beautiful, happy, and smart she is. I still see a bright future for her. I still have a small hope that she will not have to deal with epilepsy her whole life. Nothing has changed. But like I said, we all need to be educated, honest, and open about this. Not just those of us in Presley's life, but everyone else who may know someone with epilepsy too. That is the only way we are going to have any hope at being as supportive and helpful as possible, and the only way that we can assure that everyone with epilepsy can have as normal and bright of a life as everyone else in society.
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