This is a rough period in our life. Rough doesn’t even really begin to describe it. Hell is a better term.
I can’t even say what I’m feeling now. I am up and down, depressed one day and raring to go the next. My emotions are completely mixed and in true Gemini fashion, I cannot even guess which of my dual personalities is coming out next.
I’m tired, I’m hurt, I’m angry. I’m a whirlwind just blowing through every day right now. I feel like I’m caught in a spin and I cannot stop it.
I know it will end. I know it will calm. I know I will have that false sense of safety again.
Then BOOM – it will all come tumbling down because seizures will breakthrough, medicines will need adjusted and babies will grow.
I want a normal life with normal kids that have no health issues. Isn’t that every woman’s dream? Don’t we all think how perfect our children will be before they come?
I know when I was a little girl, I never thought that my children could be sick with anything like Epilepsy, even when I knew I had it myself. Now I watch Laycie treat her dolls for this disorder and all because she and her sister and brother have it. She shouldn’t even know it exists!
But she does and what can I do but prepare her for a life of living with it. And not only for her life but for those of her children too. Epilepsy will impact her entire life: past, present and future.
People always tells me about these poor children they know, about their families in town and how they suffer this or that. Though I do feel sorry for them, I think what about my children? People look at them and think how lucky we are to have “normal” kids. They never guess anything is wrong with our children.
Epilepsy is a hidden disorder. Until my children drop, they appear perfectly fine. On the outside, they look like everyone else. On the inside, this monster lurks waiting to turn our lives upside down.
I know I should have more faith. My big brother’s words always stick with me, bringing me strength. On the day I told him Emmalee had Epilepsy he told me, “She’ll be ok. We’ll get through this. We did it with you, we will with her too”.
I hope every day for those words to be truth. To just be able to get through it all, without losing one of my babies, without a seizure damaging their brains for life. Most people don’t realize just how serious a life with Epilepsy really is. Truth is, my babies may not make it through their next seizure and that is my biggest fear in our fight with this disorder.
It’s not something I want to talk about and it’s something I have spent much of our life ignoring. But how can I continue to ignore the truth? Today, I’m not talking about it but you can bet, I will be in the future. Stay tuned.