Hope and heartache

I read this morning – I don’t have the link anymore, so sorry – that February is Special Needs Awareness Month. I’ve seen this kind of thing perpetuated all over on Facebook, and 90% of the time it’s not really Whatever Awareness Time Period. But I saw this on Twitter, not Facebook, so it must…

I read this morning – I don’t have the link anymore, so sorry – that February is Special Needs Awareness Month. I’ve seen this kind of thing perpetuated all over on Facebook, and 90% of the time it’s not really Whatever Awareness Time Period. But I saw this on Twitter, not Facebook, so it must be true. Right?

All kidding aside, though. Jessica and I would never miss an opportunity to talk about our amazing daughter, or how she’s far surpassed what doctors predicted she couldn’t or wouldn’t be capable of. But she still has limitations – of that we’re very much aware, sometimes painfully so. But for the very first time, Namine has recently come face to face with inequality.

The other day I took Namine to therapy by myself because Jessica was sick. Afterwards, we went to McDonald’s for lunch. I got her a cheeseburger Happy Meal, myself a chicken sandwich. Namine’s appetite has lately not been what we’re used to, so I was surprised when she ate everything – even the meat patty itself. Usually she’ll only eat part of it and declare herself done, but not this time.

We sat in the children’s play area – at her request – and by the time we were done eating, we were the only ones in there. Namine had kept looking up at the tunnels for kids to crawl in, and she asked me if she could go in them. I said no, they were too high. She accepted this, but didn’t look happy about it. So I suggested we go over and look around; I knew there was no longer a ball pit (not that I would have let her go in, knowing what I do about how sanitary – or not – fast food restaurants are in general), but I thought there might still be a video game console and TV.

I was wrong. There were only two things: a chair for the birthday boy or girl, and stairs going up to the tunnels. Namine leaned over in my arms so she could look up at where the stairs emptied into the tunnels. “That’s high, Haha,” she said. “I can’t go up there.” I agreed, but I put her on the floor and told her she could climb the stairs a bit, if she wanted. I realized too late, as I had already set her on the floor, that the stairs were too far apart from the floor and each other for Namine to climb.

She discovered this for herself soon enough. She was able to stand, using the first stair to pull herself up, but even standing straight up, it was already at her neck level. “I can’t climb up, Haha! It’s too high!” It was probably the first stair she’d encountered that she couldn’t climb, and it bothered her quite a bit. I picked her back up. “No! I want to climb the stairs!” I explained that the stairs were too tall for her. She looked me straight in the eye, and I could see how angry she was. I could feel her body heat, feel her get warmer as she does when she’s very upset. I felt as though she could burn me up. “IT’S NOT FAIR!”

Having gotten out her anger, her lip started to quiver. “It’s not fair.” Her voice was no longer full of rage, just pleading. Pleading me to make it fair. My heart must have broken into a thousand pieces. But if it did, then why does it still hurt?

I smiled at my daughter, my little love. It was hard. “How about that chair over there?” I said. “I bet you can climb up there. Do you want to do that, just you and me?” She looked at the stairs, then the birthday chair with the high yellow back. Its red shiny seat beckoned and won her over at last. “Sure!” she said, happy to be given a challenge, but one she knew she could do. I had to give her a little boost, but only a little. Once she was happily seated in that chair, she smiled the biggest smile. I’ve done nothing to deserve such a brave and strong girl, yet here she is, all the same.

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