BEING A PARENT IS NEVER EASY. Tonight I was pushed into the reality of being a family with epilepsy. Our 14 year old son is epileptic and our 19 year old daughter had her first sz and was diagnosed as well 2 years ago. She had a single sz we are aware of up until now. She had to have surgery to repair a sports injury from when she was in high school soccer and track. Today she triggered probably from lowered thresh hold due to her body repairing the surgical trauma. She had her second seizure today after nearly 2 years sz free. It was a bad day. I had it nagging me after her surgery but after a month I had hoped she was going to dodge that. She was just outside of post ictal and said to me with tears in her eyes that she just wanted to be normal. My heart broke. The only positives are that she seemed to develop an aura 10 mins before which is always good. And she only had the one so far today. Oh and we always have extra meds on hand due to 2 kids with the exact same seizures so we were able to up her dose without having the doctor need to call it in immediately after hours. Today I finally had a chance to consider it all and broke down when everyone was asleep. I have always just worked through it because there are no other options. After 9 years it is just a way of life and I always considered us fortunate that it is medication controllable epilepsy with both kids. But a friend said tonight it must be really hard to be unable to fix it for your kids and it hit me. I sort of broke in that moment. It hit me that being a parent of a child with such an issue is different than normal and in that moment I felt more of what my daughter said. I have never mourned the loss of normal because having epileptic children is my reality. Having to worry about the triggering is not normal but reality. I became complacent because our kids were sz free for years. Today I was reminded of how different our lives are as I sit here watching my 19 year old sleep on a baby monitor while I am taking the shift so my husband can rest for work tomorrow. I am grateful for our level of normal, I am not sure I will ever understand what it will be like to never worry about my children on a very deep level. Today was a bad day. Luckily its not the worst day we have ever had within these parameters of epileptic family life. Thanks for the space to vent this. I really had no where else to write it out. Evidently I had a lot more than I knew I had to say about it all.
Posted on: Sat, 21 Jun 2014 07:53:43 +0000
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