Bounce, bounce, twirl! Bounce, bounce, twirl! I’d provide a visual, but I don’t have one, so you’re going to have to take my word for it…
Yesterday was Emma’s first day at her new school. Emma was scared and anxious. I was scared and anxious. Every time I tried to do the breathing exercises we’ve been practicing, Emma begged me to stop, “No Mommy. I don’t want to do breaths!” So I did them quietly to myself hoping she wouldn’t notice. We did exactly what we planned. I took her to school. I brought her up to her classroom where she joined three other children, two non-speaking and one verbal. I stayed with her longer than I should have, but seated across the room out of her line of vision. Her head teacher, who’s been teaching for more than ten years, and special ed for six of those ten, was kind, respectful yet reassuringly authoritative without seeming intimidating. I set the timer for three minutes, gave it to Em and told her I’d leave when the timer went off. She said, “Go sit with other kids when Mommy leaves” and I cursed myself for not having set the timer for 10 seconds, at the same time congratulating myself that I hadn’t set it for 10 minutes. But that was the kind of day it was. A day of juggling opposites. Emma’s favorite book kept up a steady patter in my head… Matman stands, matman sits, let’s say opposites! Staaaaaannnndddd! Siiiiittttt! Staaaaaannnnndddd! Siiiittttt!
And in between matman’s curious chant, I watched and listened. I could see Emma relaxing. I could see her watching. She began to join in. The timer beeped, I stood up, Emma walked over to the table to join her peers, just as we’d mapped out and I left. When I returned to have lunch with her she was happy and laughing. As we sat in the cafeteria with her teacher, aides and other kids I mentioned the “letter” I’d written. I said, “I hope you didn’t feel it was condescending, I didn’t mean it…” and one of the teacher’s aides interrupted me and said, “Not at all!” She then went on to tell me she’d gotten out a highlighter and made notes. She and the head teacher reassured me that they appreciated it and credited it with the success of Emma’s first day. I was relieved and grateful for their kindness. When Emma was finished with lunch, she turned to me and said, “Go with Mommy to the big carousel?” This was what I’d promised and I nodded yes. As we got up to leave, Emma turned, said, “good-bye” and then said each person’s name and blew each a kiss (the ultimate compliment from Emma and not something she usually does.) It was all I could do not to openly weep with relief.
There’s a great deal of talk about us parents. How we feel, what we think, our emotional state, our perceptions, our understanding of events as they occur, what we think our child may or may not be feeling, thinking, understanding. All of it is through the filter of our own experiences, what we’ve learned or been taught. It takes a leap to realize what we think we know or believe may be incorrect. That’s a hard concept to digest. It’s taken me eight years and there will always be more for me to learn and understand, I’m still very much at the beginning of this journey. This fall will mark eight years since Em’s diagnosis. Eight years ago when I believed I knew things about my daughter, only to learn how very wrong I was.
I think I understand and then find I really don’t. I don’t “own” Emma, she isn’t “mine” in the sense that she is not my possession. She is a being in her own right, with her own ideas, opinions and thoughts. I have ideas about what constitutes a quality of life, I have opinions about other people I meet, I view their lives through the lens of my life, my hopes and dreams. It’s easy to fall into the idea that my views are the correct views, but I know how often I am incorrect.
I began this blog to record Emma’s journey, but have found I am increasingly uncomfortable making the assumptions necessary to actually do that. In recent months I see this more accurately as a record of my journey. I find myself not wanting to talk about Emma as much and when I do, I ask myself is she okay with what I’m writing? I have her photo splattered all over the internet and while I am perfectly fine divulging the gory, messy details of my past in a public way, I haven’t given Emma the choice. I’ve just done it. I don’t know where to go from here. Just because she often cannot communicate her ideas and opinions doesn’t mean she doesn’t have any. I know now how incorrect this assumption is. I’ve asked her about this blog. I’ve shown it to her. A few times she’s asked me to read her a post I’ve written. I’ve asked her which photo is okay to post, but just because she points to one, doesn’t necessarily mean it’s okay. It’s a dilemma and one I am not clear on, though increasingly I’m uncomfortable with the choices I’ve made.
Someone once said to me, “We give birth, the umbilical cord is cut and from that moment until we die our job is to learn how to let go.” The timer hasn’t beeped yet, but I know it’s ticking.
Chalk Art on 7th Avenue – “Happiness”
“Step Inside”
