Planning for the unexpected.

Planning for the unexpected.

The one constant with epilepsy, at least for us, is that things are always changing. I know that not all with epilepsy have as much change as often as we do. Many, thank goodness, have years between seizures. I think that is the goal for everyone until someday there is a cure, and we pray for that daily. However, there are families like ours that don't go that long between seizure activity. Or in recent months, needing to make changes for prevent future issues.
E has a few different types of seizures, most have been resistant to medication. The one thing that helped was the ketogenic diet. E has been on the keto diet for almost 4 years. Since starting the diet, she's not had any of one particular type of seizure and that's been amazing. But she has also had a new type emerge even with the diet and 4 medications. Over the last 4 years she has had some weeks being seizure free. We are thankful for every seizure free day. But we have reached a point where even though the diet is helping seizures, it may be turning a bit harmful in other ways. Most of the time a body will re-regulate itself to compensate for the high rate of fat being put into the body. That's not happened to a healthy point for E. We did start to wean the diet and the numbers didn't get better. In order to prevent health issues like stroke or heart attack later on we need to go off the diet so her body can get back to good numbers. To help sorta off set the possibility of an increase in seizures we are making changes to medications before weaning. It's been a process, and it's not been going as planned.
One thing that I have learned about myself over the last 7 years, is that my planning is me trying to control. To protect. To try and be one step ahead of bad things so that I can try to prevent the bad things from happening. But what I also learned is that in doing that I miss out on so much good that is happening right before me. I think it's only natural as mothers, fathers, caregivers alike, to want to protect our loved ones from hurting, and it's totally human nature to try to avoid pain! But you can't avoid it. Epilepsy is painful. Physically, mentally, emotionally. For those who have it and those who love them. You can spend your life trying to be one step ahead, and always waiting for the ball to drop so that you can try and shield yourself from feeling the pain. Or at least lessen it. But I don't believe that it actually lessens it, or helps. It just takes you away from seeing all that good right now. In this moment. When I started focusing on the good now, and not the possibility of pain later, everything changed. It doesn’t mean that I'm immune to the pain when it comes. I feel it... a lot. I just don't let it consume me. I honor it in the sense that I know I can love another human more than anything in the world. I love more, love bigger, and love harder than I ever thought was possible because it wouldn't be so painful if I didn't love so much. And I think as hard as epilepsy is, and as hard as it is to see your little struggle (what WE consider struggle), I don't believe that I would be appreciating my life and those in it the way I do because of it. So give yourself a pat on the back for being an amazing advocate, a pillar of strength (even when you don't want to be or feel like you are), and give that amazing warrior of yours a kiss on the cheek and stop planning for the unexpected.
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