Recently, we’ve started having Kelsey walk with her walker while out-and-about more. She’s been regularly using it to walk into all therapies, church, at friends and family’s houses, and every day at school. Typically, though, to go into a restaurant or grocery store we will just carry her until we reach whatever high-chair or shopping cart we need. But in addition to Kelsey requesting her walker more often, we’ve also gotten braver, ourselves.
Honestly, when she uses her walker, it’s like the red carpet is laid out for her. Let me paint the picture. Her walker is bright blue with a white basket on the back to store her treasures. She’s all smiles (still not taking that for granted!) and “good mornings!” even if it’s dinnertime. She’s a steamroller. No open-toed shoes around Kelsey Ann when she’s on a mission, people! Watch out! With her glasses and AFOs (you can read about them here) as accessories–with-or-without her new, cute, fringe boots–she’s a sight for sore eyes. So stinkin’ cute.
Luckily all the cuteness is what my brain usually allows my heart to feel. Especially when we are in familiar territory with people who see her weekly. It’s just Kelsey. That’s who she is.
But when new people see Kelsey, I then see her through their eyes. Everyone treats her like the doll she is, but the pity and subsequent reactions that people make, remind me that she’s different. It’s a crazy feeling to have on a Tuesday night out-to-dinner. I can hear 70-something women thinking, “Oh dear. What a shame. That cute family with such a load.” Or 40-somethings who are still raising their kids who move chairs, hold doors 2 minutes too early, and try to move mountains so we don’t have to suffer one second while exiting Glory Days. Or hostesses who take their voice to an even higher-than-normal-talking-to-children-octave to fawn over her (well, she is worthy of the fawning). Or adorable two year-olds who want to take her walker for a spin but are reprimanded by their parents “Don’t play with that! It’s not a toy!” **My advice–let them play with it. It makes her less-different if her friends can try it out. 😉
And I can picture you, lovely readers, thinking “I wouldn’t think that!” Yes you would. And that’s okay. I do it too. I have a daughter with multiple disabilities (and a son, for that matter) and I pity others. Yesterday a grown woman was walking into Old Navy with two elbow crutches and a slow, labored gait and I pitied her. It’s human nature. I’m sure that woman is more than used to the feelings she imagines from others and is WAY over it. Respect. But still, we want people to be okay. We don’t want to think that anyone, especially this cute four year old, has difficulties–which she does.
But. We are getting braver. We are getting used to the trumpets being sounded when we arrive with Kelsey and her walker in toe now. The looks and comments and over-niceties are fine. She’s happy. She doesn’t know a damn bit of difference. She thinks everyone gets treated as sweetly as she does. And, I love you for feeling sympathy for Kelsey and for us. I love you for wanting to hold every door ahead of us for the rest of time to take one, small thing off our plate. And I’ll happily let you hold those doors.
It does make me aware that we are different when other people show they notice. It makes me think about the path she didn’t get as a typical child. It makes me think about the surgery she will likely have to correct her hips. It makes me think about whether she will have bullies and a wedding and a her own children. All while trying to order a cheeseburger for dinner.
The good attention does help to lessen the blow of the downhill spiral of my Mom Brain. Two years ago I never would have dreamed Kelsey would be where she is now. She will be ok.
Ben, at ten, is still a star when he enters public establishments. I’ll lean on the fact that Kelsey will follow in his footsteps. Until then, we will continue to use the walker in new situations. She is so happy to explore and lead the show. Like any four year old is. Any reaction that causes a brief discomfort for me is totally worth it if Kelsey feels able to participate in life.
One added bonus of all this…I can start worrying less about what I look like or if I’m having a good hair day or not. No one is looking at me when my kids are at my side. I’m an afterthought. A publicist with the celebrities. And that’s just fine.