Over the past two weeks Izabelle has been predicting her own seizures. Some are false alarms, some are lightning fast complex partials and a few times Izabelle notified me just in time to catch her as she went into a grand mal. Yesterday, Izabelle had 18 moments when she thought she was going to have a seizure during the day. As we were getting ready for bed and picking out pajamas, Izabelle bolted in front of me, stood and stared at me and said abruptly, "I'm going to have a seizure!" I yelled to her father to come right away because I could see that this time it was going to be a big one. Dale ran toward us, stood behind Izabelle and assumed such a rehearsed position of locking his arms under Izabelle's to hold her up until she goes limp enough to fall or be lowered to the ground. We both sat with her on the carpeted floor as her entire body jerked over and over again rhythmically...eyes dilated and sunk in. I always brush my hands across Izabelle's face, hold her hands and wait for the calm. Dale stayed with us the whole time. This one knocked her out. It was like her brain had been saving abnormal electrical bursts for that moment in time. She was so drained. We put her to bed early.
I thought we had made it through the storm. I thought that we had ended our pattern of threes... But bam at 2am there was another... At four another... I ran for the diastat. Dale positioned our little girl and I administered it like a pro. No hesitation at all. After she was settled, I laid down in bed, snuggled close to my life partner, my heart was racing, my nerves leaving me restless... I woke up and felt dead and broken... I can't believe I lived like that for months in the fall...
Truly parenting medically fragile children takes a toll on the caregivers body and mind. It made me into an insomniac and culminated into full blown PTSD. I'm working on taking better care of myself. I went to work a bit late. I'm going to bed early tonight. I'm so glad I'm not alone now. This was meant to be. Thank God she helped bring us back together. I've got the best partner in the world to help me raise and fight for this beautiful child!
