A Thousand Little Things
Its 3:30 a.m. and I'm wide awake with a thousand little things running through my head.
Ashley Kate is sleeping peacefully and my mom is fast asleep across from her in the spare bed. I peek into her room and I see her sweet face in the soft glow of the light from the stars that illuminate across the ceiling. I stare at my girl and think to myself that she's safe at home all tucked into her bed, but yet I know in my heart that she's not really safe at all. Its the knowledge of this that keeps me awake night after night. She's not safe. She's not safe anywhere. She will never be safe again.
Her body is broken and the illusion I see before me, although she feels safe in our home, and although I feel safe because she is still here, is a lie. The truth is that no matter where she is...our home...her bed...my arms...a hospital unit...Ashley Kate is not safe. Her body is breaking down and there is nothing I can do to keep it from happening. Stupid liver! Stupid kidneys! I'm so angry.
We've had some hard days lately. Her body has been tired and sickly. She has felt really awful. It seems like we have a couple of good days full of smiles and giggles only to be followed by 4 or 5 hard days. On the hard days she doesn't smile...doesn't move...doesn't play...doesn't get out of bed...doesn't open her eyes for more that a few minutes. I feel paralyzed by whats happening to her on those days. I struggle to smile...to move...to function...to get out of bed...to open my eyes. I'm exhausted. More mentally than physically. I can sit in a room and not say a word for hours on end. Its too hard to speak. I don't want to talk. To anyone. About anything. I don't have it in me anymore. I fight this battle and do my best to win it while the kids are home. While they are gone to school though I sit and I stare on her harder days. My mom doesn't ask me to talk...Dave doesn't push...they just allow me to be what I am in those moments and I need that from them. I need to work this out without being told how I should be feeling or acting or thinking.
But then...on the good days...she smiles...and giggles...and plays... and my heart leaps for joy as I watch my sweet girl return to who I know she is and what I know her life can be. Tears roll down my cheeks as I see her mischievous grin spread across her face while she pulls apart the race track for the hundredth time and then pretends to be sad as she tells me "its broke" and hands the pieces to me to fix it...again. She giggles with delight as she signs "ball" and points to the ceiling fan. She wants us to toss the beach balls into the blades of the fan and send them sailing across the room. I say "remember" and the giggles and the gleam in her eye are abundant as I then say "grandma...she threw the ball...and she BROKE the fan!" To which my sweet Ashley signs, "please, please, please "through her giggles. Oh, my girl! The things that bring her so much joy. So we throw the ball into the fan, knowing we could break it again, and knowing we probably shouldn't, but not caring because of the joy it brings and the laughter it spreads through the room. I'd break a thousand fan blades if it would keep her smiling for just another day.
I'm wide awake for, well, I've lost count how many nights its been now that I lay wide awake in my bed with those thousand little things on my mind. I lay there and think of the craziest things. I think how much I'd love to grab these precious people in my world and run. Run far away to where we could all escape the craziness of our world right now. I'd love to sit by the ocean with my kids and my husband and listen to the waves roll in as I allowed the sounds to wash over my soul. I'd love to hold my baby in the stillness of the night against my chest and wait for the sun to rise again. I'd love to hold Dave's hand, and listen to the laughter spill out of my kids, and watch them all be carefree for just a few more days. If I could I would do all of this and more. I'd run and I'd hide and I'd escape the horror of what lies ahead. I would.
Instead, I lay here in the middle of the night and feel the puddle of tears on my pillow as I search for answers and solutions inside of my soul. I pray for stability, pray that her liver and her kidneys will maintain. I'm not asking for healing, I'm just hoping for things not to get worse. Not to deteriorate. If she could just stay the way she is now, not experience anymore decline, not get sicker, not suffer. Those are my prayers. Just allow her to be who she is now and not lose the quality that she has.
A thousand little things and more are on my mind tonight as I wait for rest to come and for peace to wash over me allowing me to sleep. In a couple of hours I'll wake and do my best to face the day as I silently walk through it holding these thoughts and thousand more inside my heart. I'll wait for those precious eyes to open and I'll hope for a smile, a little giggle, a twinkle in her eye to signal that today will be one of the good days. Then I'll grab the ball...