I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Life is full of teachable moments, which are opportunities to share one’s experience, wisdom, and advice. When I became a parent 10 years ago, I anticipated being confronted with countless such opportunities. But I recently found myself uniquely qualified for a particular teachable moment.
Because of my Friedreich’s ataxia (FA) diagnosis and its progressively debilitating neurological symptoms — such as increasingly poor balance, loss of coordination, and dwindling energy — I’m dependent on assistive devices so that I can function independently. For now, I use a walker full time, with an occasional assist from a wheelchair or mobility scooter.
I’m also a mom to a 7-year-old daughter, Collins, and a 9-year-old son, Brooks. Many of my teachable moments have been universal things that I’m sure most parents with kids of a similar age have experienced. However, other moments occur because I’m a mother with physical disabilities.
My daily prayer is to see those moments clearly and handle them with intentionality to foster growing compassion, awareness, perspective, and hope.
Strengthening relationships
Collins sprained her ankle a few weeks ago after tripping over a rogue shoe on her bedroom floor. X-rays confirmed there was no break, fracture, or soft-tissue damage. The doctor recommended R.I.C.E. therapy — rest, ice, compression, and elevation — and to avoid putting any weight on the ankle.
To help stabilize her ankle and keep her from demanding too much of it too soon, we rented a child-sized knee scooter. We also got a walking boot to provide extra support if she’d rather walk at school. Around lunchtime the next day, I checked in with Collins’ teacher, who told me what I’d been anticipating: Collins wasn’t using the knee scooter.
When she got home that afternoon, I initiated a conversation by saying, “[The teacher] said you didn’t use your knee scooter today. Can you explain why you didn’t want to?”
Collins said she felt embarrassed about using it. “Everyone was looking at it and asking what happened,” she said. “I didn’t want to need it. I’m so frustrated that I’m hurt.”
Here’s how I responded: “Sweet girl, I’m so sorry you are feeling all of that. I completely understand what you’re saying. I know exactly how you feel. That’s how I feel every day with my walker. But I use it because it helps me safely do what I want and need to do.
“I wish I didn’t need it, but I’m grateful that it allows me to get around, even if it’s not the way I want to get around. But do you want to hear some good news? Your need for the scooter is temporary! I’m sure you’ll be better by next week. You don’t have to use it tomorrow, though, if you don’t want to.”
The scooter stayed in our living room for the remainder of the week, and we returned it the following weekend. Collins quickly worked her way down from a walking boot to a wrap, then a sleeve, and finally a return to normal. She was back at dance class last week and played soccer last weekend.
I’m thankful she’s physically recovered, and I hope this ordeal will bring us even closer together, even though her experience with mobility aids was so short-lived.
I’m sure there will be many more teachable moments related to FA and otherwise. I remain hopeful about the relationships these moments will build.
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