Why is she walking like that?

My daughter, Nadia, was born in 2008 with Spina Bifida and does not have full use of her legs. She is mostly paralyzed from the hips down and has severly in-rotated tibia and a dislocated hip but can bear some weight and has been practicing taking steps for the last year with several different types of bracing and walkers. Mostly she crawls or uses a wheelchair to get around.

About a month ago Aidan, Nadia and I were walking into the YMCA. Nadia was wearing  her AFO’s (Ankle-Foot Orthoses) and using her walker and was proud of herself for walking without any help from me. She dutifully struggled to place one foot in front of the other and hold herself upright while hauling the reverse walker behind her. Aidan was  joyfully running circles around her, stopping to play in the dirt occasionally. We had been on our journey up the long sidewalk for at least five minutes when a family burst out of the building, talking and laughing.  One of the two little girls froze as they reached us and loudly said, “Why is she walking like that?” to her mother, who tried to answer in a sunny and cheerful voice something about her legs not working and don’t you remember so-and-so who has a walker like that? The mother’s answer was appropriate and kind. She handled the moment as well as anyone could. The father just vehemently hushed his daughter and both parents pushed their three children quickly ahead.

I know the little girl was speaking out of fear and confusion and probably wasn’t being mean (I really hope not) but her tone stung so sharply that it felt like a slap. Before the family was two paces past us, I was pulled under by a sudden and unexpected tidal wave and couldn’t hear them clearly as they continued their Q and A session, but the subtext I heard clear as a bell was We are progressive, open, loving people who accept your daughter but boy are we glad it’s not one of our daughters! I stood on the sidewalk stunned – mostly at my own reaction- and made a concerted effort to continue cheering on Nadia every few paces, reminding her to “fix her feet” and calling Aidan back from running too far away as dams of hot tears spontaneously burst and ran down my cheeks, my chest tightened, my vision blurred and a rushing sound filled my ears. I felt outside my body, as if the sidewalk and the brick building were swirling away around me, like the ground was pulling out with a tide. I have never had so much private emotion hit me in a public place. I tried not to feel shame at what my face and chest were involuntarily doing to me, making me so vulnerable and exposed. Luckily, it was easy to hide from passersby with my head down as I encouraged Nadia. My hands were full and I just let the tears fall straight to the concrete and stayed a step behind her so that she wouldn’t see me and get upset as we continued to make our way up to the building.

I managed to collect myself and sniff and wipe before getting to the childcare desk to check the kids in but lost it again in the locker room. I sat in a stall and wept uncontrollably for longer than I am willing to admit, chastising myself for being so thin-skinned, telling myself our family would have to get used to this kind of reaction- especially Nadia, which of course only made me cry harder. I have been very good about paying attention to my mood and not getting overloaded, setting aside time for emotional release in safe spaces and moments so that things don’t get the best of me in front of the kids or anyone else. Keeping pity at an arm’s length is very important to me and I am not a willing player in making our family’s story part of an ongoing public be-grateful-for-your-healthy-kids-and-hold-them-close-because-you-never-know-what-could-happen narrative. (I don’t know why, but I’m just not.) I do not want my kids to ever be made to feel less-than by others’ well-meaning but fearful comments and looks, and I usually am successful at remaining strong and accessible without cracking open.  But this interaction caught me so much by surprise, and the sadness – the incredible and unexpected grief – that arose because of it was overwhelming. And of course the accompanying anger, fear, frustration, and self-pity that came on its heels didn’t feel good either.

I did a sweaty hour on the treadmill in a haze and felt a little better afterward, but was completely drained for the remainder of the day.  Nadia, of course, had no idea what had transpired and had a great time crawling and climbing in the kid-gym with Aidan and their friends. And when I came to pick her up, she was happy and energized and proclaimed her and her brother’s mantra for success at YMCA childcare, “Mama! I no crying! Mama always comes back!” as she hugged me tight, her little hands fluttering on my back.

One response to Why is she walking like that?

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