The Missing Voice in Parenting

There are so many distinct voices to be heard when it comes to parenting. So many identities, narratives, and experiences to learn from. The connected world we live in allows us to be privy to the struggles, successes, and stories of the parents around us. Goodness knows I’ve found my fair share of chronicles to guide my family through challenges. I’m grateful that they’ve shared some of their most intimate journeys.

However, there’s one group of parents that I have yet to hear from.

As parents, we all take care of our kids, make choices that keep them safe and healthy. We navigate the tricky web of fulfilling their needs while occasionally taking a breath and making a little time for ourselves. We run them to appointments, lessons, and events, all to nurture these little seedlings to someday grow into something greater than ourselves. 

Let’s get real for a minute – those are all cutesy, sentimental ideals. Life is harder than that. What about the challenges that throw all your plans off course?  Kids can be tricky and complicated.  Kids get sick, need special care, and require parents to take days off of work.

But what if it’s the parent who is sick? What if it’s the parent who needs time away from work?

Believe it or not, there are parents like this.

Amazing, right?!  Disabled parents, parents with disabilities (whatever your linguistic cup of tea is)… we are still parents. And we have stories to tell.  

I am not some honorable champion overcoming hurdles, nor some knowledgeable advocate on a mission. I’m just a parent figuring things out. I was a part of the healthy, care-free crowd, and now the world seems always up-hill and less-than-accessible. When I switched vantage points, I became simultaneously invisible and made keenly aware of my striking differences. 

This doesn’t seem ok – I wouldn’t allow my kids to settle for such treatment – so I offer my voice to be part of the change. 

Three years after having my daughter, I was diagnosed with an autonomic disorder. A weird-sounding condition called “POTS” hit me harder than most; I landed in the unlucky 25% of patients who are unable to work, let alone get from point A to point B in any punctual fashion. There is no cure, only an attempt at partial symptom management while research is years and decades out. This chronic illness has completely derailed and revised all the images of what I planned my future as a person and a parent would include. 

It’s a thoroughly unexpected perspective filled with situations that I have been unable to Google-solve. Consider:

Question: Can you purchase a family-sized amount of groceries on your own? 

Answer: The standard store mobility scooter is not nearly large enough for any serious shopping trip benefiting more than 1.7 people.

Question: You’re bringing the baby shopping with you, right?

Answer: He can sit on my lap, as long as I remember to turn off the scooter power every time we stop, lest the whole cart lurch forward with one enthusiastic kick and topple the elaborate display of bananas.

FYI, there is no manual for parenting from a mobility aid. Yet I know that I am not alone.

Why hasn’t the disabled parents’ narrative built up steam yet? I feel like it’s a combination of misconceptions and fear, which are always good at stifling a discussion. In every wide-eyed stare sent in my direction, I sense an uncomfortable, silent questioning, with issues too rash to say out loud, but with a reaction too intense to hide.  There’s a plague of judgment towards the disabled community – who has given up, and who is worthy of that disabled parking tag? It seems like adding kids to the mix only amplifies emotions. One book I read during my second pregnancy devoted an entire chapter to CAN you get pregnant vs. SHOULD you?

Yes, I became pregnant while disabled. On purpose. (It’s a story for another day.)

What other group of parents still needs to justify why they have kids? (If you’re wondering, mine are both happy, healthy, and occasionally spoiled.) As if having a disability that I certainly didn’t sign up for wasn’t hard enough, I am continuously challenged with vindicating my method of correctly navigating the world. 

Oh, there are many stories in that. And they deserve to be heard.


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