Epilepsy continues to be hard. It saddens me to think that this illness consumes so much of our lives. We became a family of 4, myself, my husband, our daughter, and Epilepsy. Our lives have changed and I know there are so many more changes to come. Some of those changes we already know about, such as starting her on the Modified Atkins Diet and possible brain surgery and/or an implant but most changes will be unknown.
I continue to write as a weird form of therapy and because I genuinely hope that this helps make the experience easier for someone else. Because… maybe this pain we feel might be more tolerable if we knew that we helped someone with our story?! So, I write. Sometimes I publish but most of the time I delete. I delete because there’s a part of me that feels like people don’t want to hear me “complain” or I think that maybe people will think that I have given up hope? I don’t know; but, these are the thoughts that pop up in my head.
A few months ago, I was getting certifications in both Cannabis Coaching and Life Coaching and I was creating plans to really broaden my horizons. Now. Now, I am crying when ever I think I can squeeze it in without anyone catching me or calling me on the phone, mostly in my car or the shower. I don’t think about my future, I think about each day as it comes, minute by minute, that’s all I can do. When I think about the future, I get overwhelmed.
I have aged. Wrinkles that weren’t there 6 months ago are there now. I look tired all the time. I have gained a ridiculous amount of weight because I eat my feelings (and I have a lot of feelings right now).
There are many things I wanted to do with my life and there were so many more things that I wanted to do with my daughter but, right now, that’s all on hold. It isn’t a “never” but it is most assuredly a “not right now.”
I wanted so much for my sweet girl. It hurts me to think that these seizures are her new normal and that her day is dictated by “avoiding triggers.”
I am grieving for so much and I am incredibly angry. However, what I am feeling is nothing compared to my daughter who has had her life altered so drastically with no explanation as to why!
My daughter doesn’t get to experience a “normal” teenage life and as someone who was already special needs- this makes her feel even more different. It breaks my heart because she doesn’t understand what is happening.
I try to hide my feelings from her. I don’t want her to see me upset and think that this is her fault because it is not. When she was in the hospital she kept blaming herself. She said “my brain is stupid” and “I wish I didn’t have this brain.” It took everything in me not to break down. I want to be brave for her but my soul aches.
She cries a lot and I no longer pat her back and say, “there, there” and tell her everything will be okay and to dry her eyes, like I would have before Epilepsy when her problems were less… well… soul crushing.
No… no, now I hold her and let her cry…
I tell her that I love her with my whole heart and soul. I tell her that I will always fight for her. I tell her that I will do everything I can to find answers and solutions to this problem. I tell her that I will raise awareness so she can feel safe in the world. I tell her that it will not be easy and I ask her to be my beautiful, brave girl.
And, I tell her that “brave girls can cry.”