“Me?” The sweet rise at the end of the question mirrors the tilt in her head and the smile that runs from her bow of a mouth up into the twinkling blue of her eyes.
“Yes you. You can come.” At the end of those five little words that she’s come to expect in response to her requests she lets out a whoop, pumps the air with both fists and dances down the hallway to grab her purple crocs out of her shoe-box. My mother loves to tell that story. While they were visiting this summer and we were making our plans for the day this little exchange between us tumbled out and the course of it brought my own mother’s hand up to her heart in reflection. Her newly animated ability to ask this little word with such emotion over the smallest detail in our day that I’ve told her to expect and made sure she knew she was included in. It means as much to us as it obviously does to her judging from her response. From her ability to ask it in the first place after months of apraxia skill kit work on the blue plastic square that brought the “m” sound out of her to us, to the countless hours of work with various therapists, teachers and students to help her understand variations on first this, than that. Daily hand over hand prompts and reminders and practices of what to do next until one day she flies in the kitchen and is able all on her own to ask a question that she wants answered, when she wants it answered. Because she knows. She asks in such a way that you can’t help but grin back and make promises. And my mind and heart and eyes ever so briefly fill with worry that she has felt the questions, the odd looks, the whispers that trail her when we go out.
That worry, that worry though is all me.
It’s not hers.
Not for now at least.
Whether that’s because of the difference in our age or our experience I hope I never come to know. I hope it stays quietly mine. Not hers. I hope that when her eyes fill with delight at what lies in front of her that the answer to her request will always be “Yes.” And when it can’t be yes. I hope there is a reason for it. A reason that isn’t, “Because she has Down syndrome she can’t….”
The feeling between us in that one word as her hand rises with the question of me to her chest in an unconscious homage to the early necessity of sign language, is matched by the feeling that fills my heart and head as I bend down to acquiesce to her requests again and again. As I bend down I’m met with arms around my neck, hugging me so tightly, reminding me how much she wants in this world and that I was put here to clear that path for her so that she can go on her very own way.