She works hard.
She gives it her all.
She's quite the girl.
We're tired.
Sleep continues to elude us. We put our kids to bed and go downstairs. We talk, pay bills, answer e-mails, and work on Mama Bracelets. You would think when we finish those things we would march ourselves up to bed. We don't. We stay up.
Sleep isn't what it used to be. Waking up at 3:00 am every night with your mind twirling thoughts around, as if each one were trying to grab a hold of you so it could be the one to scream its needs to you, awaits us.
Sometimes when I wake up, I find my way down to the family room, where just hours earlier the kids were playing. Toys are away, the furniture has been put back together and silence rules the room. There is an echo; a sort of buzzing that I can discern. My head grows quiet and I sit there. My body is still as I begin to lose awareness of it...I get lost in a world filled with thoughts of my life. Where I have been, who I have known, what I have done. I play scenes from my childhood, adolescence, and adulthood. For brief moments it seems as though it all makes sense yet I cannot put my finger on it long enough to hold it...to capture it. It eludes me as quickly as it had arrived and I am left with nothing.
I walk back to bed. My mind is tired and I feel no emotion. If I wanted to cry I couldn't. If I wanted to smile, I couldn't. If I wanted to furrow my brow in anger...I couldn't. My body grows numb as I lay there. I find a focal point using the moonlight that streams in through the high window. My breathing slows and I greet slumber with an hour left until I must wake for the day.
As my day goes on, whether it is a workday or a weekend, I numbly participate in life. My mind is not simply preoccupied with my family and the challenges we are facing, it is consumed. I have found ways of breaking from this consumption for periods of time so that I can continue with my work, with my chores, with my decisions. I know, however, that when I return from any task, SMA will be waiting.
I've never felt an exhaustion such as this.
I can only wonder how Ella will handle her knowing she has SMA...for she will never be able to distract herself from it.
We have some time before her awareness of SMA becomes her reality...our time is now to learn how to handle it so that we can give her what she needs when her time comes.
