While she sleeps, I feel relief. When I turn around and those beautiful eyes are closed, and her body is in a complete and total state of peace and slumber, I exhale.
No more are her eyes scanning the room. No more are her limbs possibly rigid. No more are the seizures. No more are the shrieks, the eye rolls, and drool that follow.
No more do I have to shuffle through the various and fleeting thoughts that only come naturally with having, and loving a girl like her. I welcome the stillness, the reprieve from wonder: is she happy, bored, sad, or experiencing a good life? For it's in those napping and sleeping moments that I know she's at peace. I know she's in a state of tranquility. And to be honest, it's truly the only time and thing I know for sure.
There is of course a duality, or an opposition to everything...so my deep and appreciative exhale is often followed by an inquisitive inhale. And that inhale is full of questions as to why it must be that I am most at ease as she sleeps. In these moments, the realization of all we have lost sometimes bears down in the most severe way. Although we make the best and most of our waking moments, there is no doubt - they will always remain downright unbelievable at their core!!
It's in the times when I just don't know what else to do with her for the day, that I miss our other little girl in the worst way possible!! And so I end up relieved when she has fallen asleep. It takes the pressure off to find something else to do with a girl that can't do anything, or show any sort of enjoyment for anything.
All I can really say is - brain injuries suck, every day of the year. I want to really enjoy my child while she is awake. For her week off of school I wish to find peace and comfort in - her smiling face, her goofy personality, her chattering mouth, her over the top outfits, what she thinks we should bake this year, and whatever else we happen to stumble upon.
But definitely not in the moments...
While she sleeps.