We let our guard down and we began to feel safe. The Monster held his visits for what seemed like forever, making us believe that we were safe, that she was safe. We thought maybe, just maybe she could stop the medication and live a normal life. But that was just a dream.
Twice this week, Laycie had seizures through the night. We had lowered her medication a few months back in the hopes that she could come off of it. Our hope was that since it had been longer than a year, that perhaps she had outgrown the condition. Unfortunately, that hasn’t happened but we now know.
The first seizure Laycie went through alone. She didn’t understand what had happened though she was awake for much of it. It woke her at 2 am and after she went to the bathroom, she asked for something to drink and she returned to bed without even saying a word because she was unaware of what she was actually experiencing. This was her first seizure that she “remembered” and felt the experience of. This was the first time she could tell me what she feels, what she sees, and any details from her own viewpoint.
A few nights later, Laycie was extremely tired suddenly and said she needed to sleep, which she did but only for 30 minutes before waking again with so much energy that she couldn’t settle down. She and I sat in the living room and watched TV together for a bit. Then, following my instincts, I asked her to come sleep in Mommy’s bed. Even there she was restless but I got her to sleep. I dozed off and woke to her body beginning to shake. My heart broke as I knew from many many nights of sleeping next to her, what was happening. I turned her as she had her face laying against her pillow and her body was pulling her down further. I woke my husband.
She fought – my girl fought against this seizure and was determined not to let it defeat her. She turned herself. She grasped onto my voice and pulled herself out. We applied Frankincense to help her relax and we waited and talked until she was able to rest again. But even now, days later, she’s terrified to even try to sleep.
Laycie is 10. She’ll be 11 in April. She’s had seizures since she was 4 months old. This is the only life she knows. She’s never had a day without medication to keep her seizures in control, so we were hopeful for this chance of a normal life. But it will not happen for her, at least not for now.
So for now, we have increased her medication. We have an EEG scheduled for a few weeks out. We are hopeful to find some new info on this EEG and to look at the next steps in her care as she heads into the teen years. For now, she sleeps between my husband and I so that we can keep a close eye on her. She’s still nervous about it happening again and so am I. I’m not letting her far out of my sight.
This was her first seizure with my husband and he’s been amazing. He reminded me to use the Frankincense. He calmed her fears. He even slept on the couch with Jackson one night since when Jack was feeling left out because sissy was getting so much attention. He is the best Dad and best Husband I could ask for. I’m so thankful.
We will remain on watch until we have the EEG and discuss our future with Epilepsy. We’re in this for the long haul and we will continue to help Laycie fight this Monster. We will not let it win and we will not give up.
Until next time…
Dana
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