Wednesday, December 5, 2007

Make It Stop, Please

Your day started off rough, didn’t it my sweet Ashley? Just like so many other days recently. Although you wake up with a smile on your face, it’s not long before a seizure steals the morning joy from you. I know you don’t understand the funny feelings in your head just before the seizure erupts. I see the confusion on your face as you get very still, your eyes moving rapidly back and forth, trying to make sense of the buzzing, the lights, the dizziness, or whatever the feelings are that course through your brain. You hit your head trying to clear the fog, trying to make the strange sensations stop. But it doesn’t work.

In just moments, your body stiffens and the fear is in your eyes. For a short time the essence of you is gone, and the shell of the seizure is all I see in your face. It’s so scary for me, but I know it’s much worse for you. If only you could make it stop, if only I could make it stop for you.

As the seizure retreats, the light returns to your eyes. Still the questions remain, still you are upset and hate that you have no control. You are tired and upset, and the tears soon follow. I help you to your room so you can lie down and attempt to organize the sensations surrounding you. You return to the comforting actions you so love – the turning from side to side, the vibration of your battery toothbrush in your mouth, the warmth and pressure of your heavy quilt.

I know you hate the seizures – hate the aggressive behaviors that sometimes follow. I hate that people will think you have an aggressive nature when the complete opposite is true. The seizures turn you into someone you aren’t. They take over the compassion, the love, the gentleness and the warmth that define you, and cause you to become something you don’t like.

Just know, my sweet child, that even though I haven’t been able to stop them yet, I will never stop trying, never stop looking for answers, never give up trying to make your life better.

1 comment:

mags46 said...

Hi Ashley.

Dont ever let them stars in your eyes stop twinkling. My love and prayers go with you.But my sweet Ashley you have the greatest gift of all,you have your mummy. My heart goes out to you bothxxxxxx