I sit on a hard chair at a round table.
The light is filtering through the vinyl blinds and the muffled squeals and commotion from the end-of-school hustle and bustle are filtering through in waves from the nearby playground.
Dave sits at my side and we are surrounded by people who know Lucy well.
And it is evident that they love her.
Her beloved teacher. Her vision teacher. The kindergarten teacher. The school psychologist.
We are going over her IEP and her progress from this year. They smile at her obstinacy they have grown endeared to over the three years most of them have known her. They tell me why she didn’t score overly high on a couple particular evaluations they have done to monitor her progress:
“She was on ‘Lucy time.'” They explain, knowingly nodding in unison. Timed tests are not her forte.
They skip nimbly over that and review her exceptional progress: She can write all her letters. She knows all the letter sounds. She can sound out simple words. She is a little artist. She colors in the lines. She’s kind and sweet to others. She is obedient (on her own timeline).
They tell me she is ready for Kindergarten.
Not some integrated program they had said may be a better placement for her at the beginning of the year. She’s ready for the Real Deal as far as they are concerned.
And part of me is elated at that news. That’s exactly what we have worked toward. We want her to be “mainstream.” We want her to be as “normal” as possible. And here they are telling me they think she’s ready. She’s smart.
But another part of me is uneasy.
What if she regresses with different structure next year? What if she can’t keep up with the other kids? How can one teacher with 25 other kids in the classroom help her with what she will need? How can another teacher love her as these women over the past three years have?
It’s all the unknown scrambled up in my brain.
Part of me panics.
They shift over to “the bad news:” an assessment of Lucy’s vision where the prognosis isn’t as bright.
They tell me how she has started shifting her head to see things in front of her more clearly. They relate that she holds things just a few inches in front of her eyes to inspect them. Her color differentiation is deteriorating.
They tell me she is doing well with learning the “scissors technique” to trace the lines of Braille appropriate to her age level. She is learning to use a video magnifier.
They go into the varying recommendations they have for the teacher next year. How she’ll need extra verbalization of visual materials, preferential seating, strong illumination…the teacher must use dark markers for her white board. We go over the possibility of having a “cane specialist” start teaching her how to use a white cane. No, Lucy would detest that.
It’s all useful information except I’m not really thinking about what they’re saying anymore.
Part of me wants to scream. The back of my eyelids start prickling. The room is closing in on us all. I don’t want this to be happening to my daughter. To us. I want her to be normal. I want her to thrive like I see my other children doing.
But then something sparks in me. The Vision Walk flickers into my mind. Hope for all the research coming up and the thought of all the support Lucy has somehow opens up those walls again and I can breathe.
I don’t know what will happen with Lucy’s eyesight. And surely it will not be the end of the world if it continues to fade. She is smart and her strong will will get her through the rough stuff. She’s not nervous when she can’t see. She is already compensating for low vision when she’s in dim places. She’s a fighter and she’ll be fine.
But as her mother, I’ll hold onto every hope I can.
And I’ll always tear up when I think of the outpouring of love from so many around her. Love that I’m sure will get her through a whole lot in life.
Somehow in that small room, on that hard chair, surrounded by people who love my daughter everything is ok again.
The fact that these ladies love Lucy despite her obstinacy comforts me. Her new teacher will just have to love her this much, keep her confidence growing, keep her on this path of progress.
Because she’s Lucy. And those blue eyes of hers are intoxicating. The way she moves her mouth when she tries to express herself. Her funny sense of humor.
But that doesn’t stop my own vision from becoming blurred with those kind ladies surrounding me who care so much. They have changed Lucy’s life forever. So have her therapists. And so have so many others she doesn’t even know.
My heart swells up, the room comes into view again and I know everything is ok.
Perhaps not the kind of “ok” I had always anticipated, but maybe it’s an even better “ok” than I knew to expect. Because I never knew that hard things could bring so much good.