Keep on Dancing

This week Keira had a very special visitor. My very first dance teacher and long time family friend, Anita, came to meet Miss K and stayed for a chat. It was bittersweet for me, having Keira meet this very important person in my life, all the while knowing that she may never have the choice to participate in dance in the way that I did. Immediately following Keira's MRI, I remember saying resolutely to Jeff, "I WILL take her to dance class!" Trying to temper my enthusiasm, Jeff reminded me that she may well be in a wheelchair. Well, damper my excitement it did, as anyone who's climbed the steep flight of stairs up to the Kennedy School of Dance studio will understand. People never cease to amaze me, though. Anita told me about a time in her past when she taught special education and had her whole class perform a dance in the school's talent show. Wouldn't you know? Maybe I'll have to talk to Lisa and Annie about getting that ancient elevator in motion.

The story of title of my blog actually starts with Anita. I remember, even as young as 4 or 5, preparing for recitals during dance class on Thursday nights. Mrs. Kennedy would quiz us, "What do you do if you are on stage and the lights go out?" to which the class would shout in unison, "KEEP ON DANCING!" "And what do you do if your shoe comes untied?" "KEEP ON DANCING!" "What if you see your big sister waving at you from the audience?" "KEEP ON DANCING!" and so on.

I don't know if that phrase stuck with all her young students the way it did me, but it became kind of a mantra or slogan for me. When I was still on the fence about starting this blog, I finally told Jeff that I would do it if he would set it up and name it for me. It didn't take him long to come up with the title. And it fits. Not only is dancing something that I love and have been passionate about for most of my life, the idea that we have to just keep going, no matter what, is where we are right now. It might hurt. We might forget what we're doing from time to time. A shoe might fly off. The tempo might be too fast. We just keep going. And hopefully, eventually, we'll fall into rhythm. It'll feel like second nature. Our hearts will soar with enjoyment and gratitude. We'll have created a work of art. Others will applaud. And hopefully not out of obligation or politeness, but because something that we did resonated with them.

Photo courtesy Garrison Photography
www.garrisonphoto.org

I continue to be blessed daily by the supportive comments, texts, visits, hugs, etc of those around me. I know for certain that it was the presence of others that made this week's upsetting news easier to bear. Early in the week, I became more concerned about Keira's eyes. It was quite disconcerting to see her eyes wandering to face in opposite directions (not crossed) from time to time. This was more severe than the lack of eye teaming we'd been noticing for weeks. I called the pediatric eye specialist. He called me back personally and, in sum, said, "What you're seeing is essentially the result of brain damage. There is nothing to be done about it. It won't likely get better."

As is becoming usual, this was hard to hear, though not surprising. But still, as I felt particularly down during the next couple of days, I asked myself why this hit me so hard. I found the answer: Every time we get some "bad" news about Keira and her prognosis, I try to re-imagine her best-case-scenario in terms of her future and her maximum capacity for learning and growing. I feel like every time I get difficult news, I have to bring my expectations down another notch. As silly as it may sound, I told my folks, "I can't picture a fully functioning adult with googley eyes."

Thank goodness that just when I feel discouraged, Keira does something that makes me think I may just be underestimating her. Her little coos and laughs are enough to melt your heart! The way one side of her mouth pulls up just a little higher, looking kind of mischievous like she's saying, "Gotcha!" or "I was just messin' with ya, Mom!"

It's been a little strange that Keira's appointments have been getting to be fewer and farther between just as her delays are becoming more obvious to us. At just about 10 pounds, she can practically pass as a newborn. But at 3 months old, she should be attending to faces, watching things pass across the room, playing with her hands and feet, smiling more, and grasping objects more readily. This is a tall order for our little one. We do see her developing, though, albeit at her own pace. Just this morning she was tracking fairly well, as her brothers sat on the bed with her, waving Transformers in front of her face.

I'm so excited about this week's one appointment. On Wednesday, Jeff, my mom, and I will all meet with the OT in our home for the first time. She is going to assess Keira but most importantly, will give us a zillion (her words) ideas for stretches, exercises, etc. to help with her movement and development. I expect this to be empowering for me, as I often wish I could just DO something for her.