“You are my sunshine, my only sunshine. You make me happy when skies are grey. You’ll never know dear, how much I love you."
"Please don’t take my sunshine away.”
I sat on the floor in the girl’s playroom and stared at a picture on the wall imprinted with those lyrics, as they expressed their old country roots. The typeface was bold and dark, like they sorrow that it spoke of. The words lie flat on paper that was purposely crumpled up for aesthetic purposes. Or perhaps it had been prepared for the garbage by someone like me - someone who had grown sick of sadness and grief.
”Please don’t take my sunshine away,” I recall whispering under my breath, as I watched Juniper’s tremors. She sat, immobile, on dull tan carpet, as Laurel crawled around her exploring the room.
Nine months prior, when Dr. Luke informed Coley and I of Juniper’s chromosomal deletions, I had grieved over what impact my daughter might have on my life. I actually worried that Juniper might hold me back, keep me from exploring the world. I worried she might not walk and I worried about how that could impact me.
Now, as I sat and watched her reach as far from her base of support as she could, to reach a shiny red bead necklace about a foot in front of her, my thoughts shifted: What if June doesn’t walk? How will that hold her back? Will it keep her from exploring the world? Will she be able to find her adventures? Will she have the freedom to go wherever she wants to go? Right now, it is up to Coley and I to build a world around her. Will she ever be able to take the steps it takes to build her own? My thoughts had shifted from worrying about my own freedom being inhibited to worrying about June’s freedom.
I wanted so badly for her to be able to get to the baskets of toys on the shelves in front of her: the Leapfrog Shapes and Sharing Picnic Basket, the Chuckle Ball Bouncing Sensory Ball, the Baby’s First Blocks basket, the Baby Einstein's Take Along Tunes music player, the Fisher-Price Groove and Glow BeatBo Boogie doll, and the VTech Magic Star Learning table.
I wanted so badly for her to be able to get to the trails, the trees, the fresh air, the oceans, the rivers, the lakes, the tops of mountains, the depths of forests, the sand and the soil.
June’s physical therapist had recently said she was “...at a plateau with gross motor, for now.” When I looked at her with uninhibited concern, she had responded by reassuring me that everything was fine, “...as long as she doesn’t regress.” The word “regression” has haunted me all too often.
I sat and remembered the physical therapist’s words and I looked at those lyrics and I looked at June.
“Please don’t take my sunshine away.” I whispered, as tears pressed against the backs of my eyes.
“Please don’t take my sunshine away.”