Monday in the Park with Lilly


With the arrival of spring finally, I was able to take Lilly to the park the other day. I wasn’t even sure if she’d be interested in anything there anymore, but she wanted to go, so off we went.

The splash pad won’t be activated until the end of May, so that was out. I asked her if she wanted to go on the swings. Nah. She poked around a little, climbing up the stairs to the slide, and I felt she’d come a long way since she was a toddler and I had to help her up the steps and across the platforms. Now, I could watch from below, without (too much) anxiety, as she made her way through the structure. She even climbed up the ladder-like structure with footholds, with me just hovering below, spotting her in case of a slipped foot. But she did fine.

There’s another structure across the way that is generally for climbing, with ropes and ladders and a kind of rock wall. She’s never been able to negotiate this structure from very early on, but she wandered over to it anyway.

“Look, mom, it’s like a hammock,” she said, indicating the black ropes that did, indeed, resemble a big hammock, just with very wide gaps between the ropes. She tentatively tried to sit on part of it, but didn’t feel stable; she quickly decided it wasn’t for her. Meanwhile, kids much smaller and younger than her were zipping around, hopping onto it, climbing, hanging, swinging like little monkeys. We watched and laughed at their antics, but inside my heart broke anew. She doesn’t say much, and I often wonder what she thinks.

She went around to the side with the rock wall. She wanted to try it, but the first foothold is far too high for her to get her foot up onto it. We laughed as I tried to push her up so she could gain purchase, but she’s too heavy. She tried a few times, but gave up after a bit.

“Kids smaller than me can get up here,” she said, but not with any resentment or anger. Just a fact.

“Well, they don’t have the same challenges as you,” I said.

“No,” she said, instantly going into I’m-going-to-argue-with-mom mode. “I’m not different. I’m the same as them.”

“Okay,” I said, not wanting to push it. We wandered off to sit in the shade and people-watch for a while.

I often wonder how she views her “challenges” as I put it, how she views herself in comparison to other children, what she thinks. She’s clearly aware of differences, but doesn’t always want to admit to them, like the above example. She knows she has Spina Bifida, knows that because of it, she can’t do certain things other kids do, or rather, has to do them differently. Certain kinds of climbing, jump-roping, those little two-wheeled scooters are off the table.


Lilly (walking) keeping up with her friends.

“I’m the slowest runner in my class,” she said to me one day, pouting a little bit. I’m getting very good at ignoring the knife-twist in my heart that these comments elicit, and go directly into Mommy-mode:

“That’s true. But you know what? There was a time when we didn’t think you’d be able to run at all. The fact that you can run [in her slow, loping way] is an amazing thing to us, a thing you should be proud of. You don’t have to be the fastest. And there are so many other things you’re good at, things that you excel in. You’re a great reader [5th grade level], a great artist, you play the violin. Focus on the things that you can do, and do well.”

She was fine after that, or at least, forgot about it for awhile. I love that she wants to keep up with her peers, that she doesn’t want to be treated any differently. I think that bodes well for the future. I like that stubbornness and determination, and I don’t want to quash it with being overprotective, but it can be hard. I have to find the line between safety and letting her try things.

Bicycle riding has always been something we wanted her to do, but it’s taken several years of trial and error to get her going on it, find the right bike, help her overcome her nervousness of wobbling on the training wheels. This year, we found a pretty purple and aqua bike that she loves. We still feel we have to jog alongside her in case of toppling over to the side, but her core strength is getting stronger and she’s staying more upright.

It’s exhausting, but worth it to see her smile of triumph as she pedals away.