Sarah was born with arthrogryposis multiplex congenital (AMC), a rare disorder that severely limits movement and strength in her shoulders, arms, wrists, and hands. Sarah has learned to adapt to life by primarily using her feet and toes to complete most every-day tasks like eating, typing, putting on makeup, and driving. She also uses her feet to take care of her baby, Ethan.
In a video she made for a CNN iReport, Sarah shares her initial concerns about how she would parent when she first learned she would be having a baby.
“When my husband and I found out that we were pregnant … we, as well as many other people who love us and care about us, had some concerns about how I would care for a baby.”
Adapting to her abilities
“I wasn’t really nervous until I realized how nervous everybody else was,” she shares, then gives an example of the kinds of things people told her. “I was told there was no way I’d be able to bathe a baby – which I do,” though Sarah admits it’s not the easiest task, especially when she has to get a slippery baby out of the bathtub. But it’s a task she’s learned to conquer.
While Sarah admits that parenting has indeed been difficult, she also says there hasn’t been anything she hasn’t been able to figure out. And with that statement, the video switches to Sarah changing her 8-month old son’s diaper using her feet.
Sarah demonstrates the extreme dexterity she has developed in her feet and toes by doing everything from flipping Ethan over onto his back, putting a changing pad underneath him, unbuttoning (and later re-buttoning!) his pajamas, and changing him into a clean diaper.
Later in the video, Sarah shows how she feeds Ethan while he sits in a highchair. She holds a small baby spoon between the toes of her right foot, and deftly scoops the mushy baby food into Ethan’s mouth.
While Sarah feeds Ethan, she reflects on some of the challenges she’s faced in parenting with AMC, and the solutions she’s come up with. For example, Sarah has developed a breast feeding schedule for her son that works with their lifestyle. Initially, Sarah breast fed Ethan exclusively, but she quickly realized that trying to nurse him discreetly while out in public was quite difficult. “I have to wear something tight that’s going to hold itself up,” she explains. “I can’t reach around him while he’s nursing to hold my shirt out of the way. I really couldn’t do it in public without flashing somebody!” So Sarah modified her breast feeding routine to mornings and nights only. This way she could give Ethan a bottle when they were out during the day.
Sarah also talks about what it was like being pregnant with AMC.
“I really had a very easy pregnancy, but I had a lot of back pain because of having to eat with my feet and curl up in weird positions. There was just a lot of pressure on my back.”
“I knew there would be a little bit of a learning curve for me,” says Sarah since no one she knew could tell her how to perform these parenting tasks with her feet. But Sarah learned quickly, and now that she’s a seasoned mom, she takes time to marvel at her son’s abilities. “It’s actually kind of strange watching him do things that I have never been able to do – to grab things or to crawl,” she shares. “It’s kind of a proud feeling when your kids can exceed what you are capable of.”
How have you adapted to being a parent with a disability? Tell us or show us your unique way of doing things, and you might be featured in the Parenting section of AbleThrive!