When I opened up EK’s computer this morning to start my new writing adventure, there was a blank page with “Mom and dad I am great ful.”
This sums up all of of our lives with her so far. She is a bright light. She has shown me the way. And in so many situations, we are growing up, side by side. I don’t know where to start with all of this, so I’ll begin with where she is now.
She is eight. She is at school, in second grade, with all the other kids her age.
In the Target cowgirl boots she adores and her favorite pink and purple ombre tee with a tiny breast pocket.
With her black backpack with the silver and gold flippy sequined star on it.
In a dusty rose velour cap with a glittery E, and long, blonde hair with a slight strawberry flavor to it.
In her braces with light pink rubber bands and palate expander.
With her speech impediment and her love of dabbing, dancing, YouTube, Minecraft, and her older brother.
With her blue and gold sparkly hearing aid.
With her water pump backpack and Mini-One g-tube.
With her Albuterol puffer in the pocket sized pink drawstring bag her home nurse Cathy made her a few years ago.
With her light pink, pinched skin tracheal stoma smudge.
With her zippered open heart surgery scar.
With her ropey diaphragm plication lines, central line marks, and chest tube craters.
With her funky, reconstructed toes and bent left pinky finger.
With her sternum ties and colonized MRSA, which is behaving itself for the time being.
With her profound empathy.
With her radiant, whole body joy.