It Had to Be This Way

I am misunderstood.

Welcome to Firelight! In case you’re new here, I write about living intentionally and prayerfully alongside my husband and two sons, the older of whom has non-speaking autism. In this edition, I write about identifying glimmers of light even in the caves of grief.

This afternoon, I am grateful for hot coffee and a warm hooded sweatshirt on this rainy day. The boys and I had a homeschool class this morning—and, though it wasn’t pleasant to get out in the pouring rain (and we were embarrassingly late for the class), I was ecstatic to get out of the house, mingle with other women (even if silently), and learn, alongside my children, how early American settlers kept their cabins illuminated in the darkness of winter. One of the teachers demonstrated making a candle from start to finish—and I found myself transfixed by her movements: dipping string into hot wax, then into cold water, then back into hot wax. It was as necessary a task for those settlers as preparing food. The other teacher read passages from Laura Ingalls Wilder’s The Long Winter and I felt the tangible darkness and aloneness of those months. 

A while back, someone wrote me: “I just don’t want you to wind up being alone and hurt.” I wrote back that I wasn’t alone—and it’s true. I’m not alone. I have my husband and my children and the God who made us and planted us on this earth at this time in history for reasons that are not fully unraveled at this specific hour. But, in other ways, I do feel alone. The rain is coming down in steady sheets as I type and I’m grateful for it. The rain gives me permission to be still for a minute. We call this “quiet reading time” in our house (or “QRT” as Read-Aloud Revival’s Sarah Mackenzie abbreviates it). We try to observe this time immediately after lunch. At the moment I am full of rotisserie chicken, a bit sleepy, and not quite ready to resume my chores and tasks. I usually read, too, during this time (right now, I’m reading the first of Dorothy Sayers’ Lord Peter Wimsey mysteries)—but today I decided to write a few lines. I wanted to write about why today was significant even in its seeming lack of remarkableness.

In this season, we aren’t part of a homeschool co-op or tutorial and, in some ways, that was my choice and in other ways it wasn’t. I’ve led a couple of different homeschool co-ops over the years; the reason I went to all of the trouble—and dealt with all of the politics of gathering different families with different sets of needs and different sets of values—was to have the opportunity to admit my non-speaking autistic son. If he wasn’t welcome in other educational spaces, I’d start a space myself and put his name first on the roster.

It was tiring—body, mind, and soul. I found myself making decisions for the good of the group (and other children) even when they weren’t good decisions for Milo.  I struggled with the tremendously difficult balance of being a good leader to the group at large and being a good mom and advocate for my son with a disability. Twice, the same thing happened: the group grew to the point that my son was no longer comfortable. And we left, both times—and I spent a lot of hours alone, in the aftermath, wondering what was wrong with us. Wondering why it was so challenging for my son to simply exist. Why it seemed so impossible for my son to share space with other human beings. Why, of every autistic child we met, my son seemed to be the most significantly impacted by his diagnosis. I had no answers. All I had was a defiant feeling in the pit of my stomach. This sense of mutiny, if you will, gave me the wherewithal to persist for another day, another week, another month, another year.

But all of this fighting comes with a relational price. I choose my family over everything else. I prioritize my autistic son’s well-being and dignity—and, as such, I’ve lost a lot. People tell me, “It didn’t have to be this way. You didn’t have to dig your heels in so hard, Heather.” But that’s what nobody seems to understand (except other parents of children with special needs)—it did have to be this way. I did have to dig my heels in. I did have to walk away. Anything less than that would’ve devalued my own flesh and blood. I am well aware of the fact that, in some circles, I’m probably perceived as something of a troublemaker. I’m okay with that.

Someone once told me, “You have to be okay with being misunderstood by other people.” I’d never even considered such a thing to be an option. It felt like life-or-death to me—making sure people understood my intentions and purposes. Over time, that wisdom settled into my skin and bones: I am misunderstood. I can survive this. I do not need to continue explaining myself. I accept the fact that other people misunderstand me and there is nothing I can do about it. I am safe.

I’ve taken up various physical activities the last few years to work through emotional pain—for a time, I attended spin classes multiple times a week. My body would hit its limit and gratitude would wash over me, there on the stationary bike. I was grateful for the fact that I was tired and depleted because it meant that I’d robbed my body of the energy to emote. I didn’t have to suffocate inside my own grief (at least for a day or two). In warm weather, I take my own bike to the neighborhood streets. I put in my earbuds and pedal to the woods by the interstate, where there is a long stretch of mostly-unused road. I pedal uphill as fast as I can and then, when I hit the summit, I take my palms off the handlebars. I crest the hill and glide down weightlessly, my gaze turned upward—trusting, hoping.

Please like, comment, and share if you enjoyed this post. Thank you for reading!