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.
In my experience, much of what it takes to be a mother is the opposite of what’s required to live with a disability.
As a mom, I constantly pour my all into my family. I manage the calendar and set the tone for the household, on top of all the mundane domestic duties such as cooking, cleaning, doing laundry, and grocery shopping. I’m the teacher, entertainer, chef, maid, chauffeur, trainer, manager, and personal shopper. At the end of most days, I’ve given so much of myself to my family that there’s rarely anything left over just for me. Although this role is endlessly rewarding and I wouldn’t trade it for the world, being a mom is an all-consuming, full-time job that demands selflessness.
But as someone with Friedreich’s ataxia (FA), I have to prioritize self-care. I need to exercise and do physical therapy. I must make accommodations for safety, relying on mobility aids, accessible parking options, rest, diet, planning, and time management. I have to be proactive about my mental and physical health while my body actively works against me. I never imagined I’d be so invested in scientific news, or that I’d develop a love-hate relationship with the healthcare industry. Living with a disability is a draining, all-consuming, full-time job that forces me to have a selfish mindset.
So what’s the secret formula to managing two demanding, overwhelming, unpredictable jobs with opposite demands? I wish I knew a universal answer. But since that doesn’t exist, I’ll share a few tips and tricks I’ve picked up in my eight years of this balancing act.
How I juggle my contrasting roles
I’ve had to make peace with the fact that no two days, weeks, months, seasons, or years are the same. For better or worse, nothing stays the same with either growing and developing children or a progressively degenerative disease. This forces me to stay in the moment. Knowing that my kids will be a little bit older and my FA will be a little more advanced tomorrow makes today seem magical — as long as I take the time to see it as an opportunity rather than an overwhelming problem.
I’ve also had to make peace with the unavoidable fact that not everything will go the way I want or plan for it to go. I will face disappointments within and out of my control, just like everyone else. It’s tempting to blame or vilify FA, and yes, it’s often justified. But I have to pause and consider if using my energy to be angry at my circumstances is productive. The same goes for unexpected expenses, viruses that practically wipe out my household, chores that need doing, and so on. Sometimes, all I can do is laugh and keep trying my best.
I’ve had to learn how to ask for and accept help. Once I learned what my capacity is as a mother and person with disabilities, I sought help to fill in the gaps. The vulnerability required when seeking help takes outrageous strength and, in my experience, is met with compassion from happy helpers. My village sees how hard I’m working and wants to help, so I let them. Receiving help isn’t a weakness, and neither is admitting defeat. It takes grit and tenacity to keep doing what needs to get done.
Lastly, both full-time jobs require copious amounts of grace. Yes, being a mom is arguably the most important job in the world, but no one does it perfectly 100% of the time. I just keep showing up for my family and trying my best. I keep making the best choices available regarding my health, knowing that I can’t be the best mom if I won’t allow time to be my best self. I’ll try to turn my phone off 10 minutes earlier to get a few extra minutes of sleep, or drink an extra glass of water. Being healthy doesn’t happen overnight, so I must give myself grace as I learn to navigate the life I woke up to today.
As mothers with disabilities, we each have a unique and incredibly valuable perspective, and the shortcomings we may feel frustrated by are shaping our children’s worldview. What an amazing opportunity we have to raise the next generation of world changers.
“Therefore, whenever we have the opportunity, we should do good to everyone — especially to those in the family of faith.” — Galatians 6:10
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