A shift in the atmosphere


There is a shift in the atmosphere right before Ev starts to have a seizure. I can sense one about to start. Whatever I am doing fades into the background, I take note of where the boys are and if they are safe, glance at the clock so I can start timing, all while making my way to Ev in a matter of seconds to be with her as long as she needs.

Like tonight, I was in the kitchen talking with Stephen after dinner, and all of a sudden my mind shifted. I could no longer hear him speaking. I looked for each of the boys, glanced at the clock and rushed to Evie’s side as she was in the shower. Her gaze was fixed to the ceiling, arms stretched out as if she was trying to grasp the air for support, she wasn’t breathing, her mouth was open as though she was mid-gasp and her body was rocking back and forth.

I grabbed her hands just as she started to list backwards and eased her to the ground. My body halfway in the shower, getting poured on, I sat there talking her quietly through it. Stephen was right on my heels as was Ellis, while Merrit was happily sitting in the sink for a quick rinse. We all were encouraging her that it would end soon, that we were here and weren’t going anywhere. By this point over two minutes had gone by and she still had yet to come out of it or take a breath. Her lips were beginning to turn blue and the color was leaving her face. She looked terrified and there was nothing we could do to make it stop.

Finally, after what seemed like half an hour the shift changes again and Ev makes eye contact with me. She takes the tiniest of breaths and with her first exhale looks as though she could sleep for days. Her whole body is shaking and she gives in to the stress on her body and attempts to fall asleep on the shower floor.

Moments like this happen out of nowhere and seem as though they last forever. There is no predicting when they will occur   and all we can do is be on point in case one does. Evie had the best day today, all for it to end like this-without any words being said she ends her day with a moment of being completely out of control of her body.

If we have such an overwhelming feeling of being helpless for our beautiful girl during a seizure can you imagine what she must be feeling? No control, no say. She went to bed peacefully this evening with not an ounce of protest, but resignation that today she couldn’t overcome her symptoms, but she will certainly try again tomorrow. That is our Evie. She is resilient. She is brave.