Note: This post is originally from January 2018, not long after Helena got her first set of long braces at age 3. That being said, shoes have always been hard to find! This post was a reflection on my frustration from shoe shopping one day.

I have always hated buying shoes. I have large feet and from a very young age, have had to special order shoes – especially if I want something trendy or comfortable. When I walk into a shoe store, the first thing I do is look for the size – then I look for the style. There is no point in finding a shoe style I like only to find that there is none In my size. Most stores don’t go past a size 10. This evening, my hatred of shoe buying has reached a new level- but not for my own woes. 

Helena, who has arthrogryposis multiplex congenita, wore a hole through the bottom of her tennis shoes for the first time, and last Friday we went shopping for new ones. Helena’s orthopedic impairment requires her to wear KAFO’s (Knee-Ankle-Foot Orthotics). The brace she wears is a long plastic formed sleeve like a boot with an open front and Velcro straps. They are to be worn with shoes – and with a raised heel in the brace, that is a challenge.

Her first set of shoes were modified by her orthotist. The Velcro straps had to be lengthened to where they would strap closed over the foot. My goal tonight was to find better fitting shoes that didn’t need modification, if possible. You would think with the wide variety of shoes out there, that wouldn’t be such a big thing. But it is.

We tried on shoes with Velcro, boots with zipper openings that can be opened wider, high tops, Mary Janes. We tried on her size, and the next size up, 2 sizes up, and 3. We probably tried on 20 pairs of shoes.  

At one point Helena decided she had found “the” pair of shoes. She pointed out a pair of apricot colored Mary Janes with a pump heel 3 sizes too big. I explained that these were not going to fit, but she insisted on trying them. I giggled as she tried on the princess shoes – and Stuart chided me. “You are laughing at her. Please stop.”

“I am laughing because she is cute,” a little frustrated and not even thinking about her disability. 

“She doesn’t know that is what you are laughing about,” Stuart said.

Then, it hit me. 

Helena will more than likely never wear that type of princess shoes. She will more than likely always have to get something “sensible” – even for her prom, and her wedding – for every special event. She will most definitely always have to wear braces.  And I will always have to be careful when I laugh because it could be misinterpreted

We will likely always have to try on 20 pair of shoes, and there may be no guarantee of finding the right pair after the 20th. And while Helena thinks it is great fun right now, one day, she is going to detest it. Probably much more than I ever did.

I cried. 

“Mommy, why are you sad?” Helena said. 

My sadness for her is not something she needs to understand right now, and I don’t know how to soften the blow for her later.  Are shoes really so important, and if they are, why isn’t it easier to find pairs for people who are not average?  Why are we so concerned about such unimportant things when we should be grateful to just have a well-fitting pair?  It makes me very angry that while the majority of the world looks for fashionable shoes in a wealth of options, Helena will be scavenging for shoes that are functional. 

Today, the main comment I got on Helena’s new shoes was, “so — these shoes are a little too slick on the bottoms, aren’t they?”

If they only knew.