Welcome to Firelight! In case you’re new here, I write about my unconventional life with my husband and two sons, the older of whom has non-speaking autism. In this edition, I write about the impact of hypervigilance on my self-esteem.
I skipped dinner last night—popped two ibuprofen and took a long bath. I had no appetite (which is unusual) and my brain was screaming You need help! on repeat. The pace of this summer has been difficult for me to manage. Special needs parenting is all-in, body and brain. I bring less to the table than other women because of this (or, at least, that is how I feel). I bring less energy, less margin, less conversational wit. My brain is short-circuiting from hypervigilance—seeing threats to my child even when my child isn’t physically present. I hear half of what is said (my brain is always looking for environmental threats and filters out “safe” people and conversation—if I don’t hear you or see you, it is because my brain considers you safe) and can’t easily commit smallish details to memory (like the make and model of a friend’s car).
I go through phases of stillness and busyness like some women go through haircuts—grow it long, chop it off. I have a period of stillness and begin to feel twitchy. I rarely feel lonely, but I fear loneliness. As such, I put things in place to prevent that uncomfortable feeling. I feared a summer that stretched out, week after week, without travel plans, day camps, or play dates. (In retrospect: a quiet, boring summer sounds ideal.) The truth is, I’m very content with one or two close friends and a couple of coffee meetups per month. My day-to-day life is demanding (even though caregivers aren’t supposed to admit that); I find it difficult to do most things.
I have two friends who are also creatives—one took the summer to illustrate a children’s book and one took the summer to revise a rough-draft novel. I ask, again and again: How do you do this? They both tell me the same thing: they work while their kids play. Meanwhile, I stare at the overgrown shrubbery in the front yard and long to take shears to it, tame it. I cannot trim hedges until my husband is off work. I cannot take my son outside with me because our front yard is near the road. I can’t risk the possibility that he’d run into the road with my back turned (and I can’t fix my eyes to his unmoving body whilst wielding a hedge trimmer—this seems a recipe for an ER visit). The only thing to do is to stare at the overgrowth and wait.
I dreamed last night that Milo was playing with a group of other non-speaking boys. They were communicating in their own ways, giggling off and on. I must’ve had this dream because of Linus’ choir camp showcase. There was an eleven-year-old boy who sang a solo—and Linus specifically pointed him out to me, later. “Did you know that he is the same age as Milo?” I couldn’t hide my surprise. “Really?” I said. “He seems so much older.” I was in awe: an eleven-year-old boy who can talk and even sing? All these years later, I’m still shocked every time I witness the abilities of a typical boy his age. It happened when he was little, it happens now, and I know it’ll keep happening.
One of Linus’ choir camp directors pulled me aside while I stood in the pickup line. “Linus is such a good helper,” she shared. I pictured my nine-year-old racing to lend a hand with things like moving chairs or picking up after a meal—knowing the sense of urgency that has, inevitably, settled into his soul at home. I thought of a recent post by Kate Swenson on parentification — and wondered if it was a bad thing that Linus was so helpful. Is his helpful nature, in fact, anxiety in disguise? The truth is, I don’t know. He is still a child. This is all a fine dance—equipping a child to be successful (which, yes, requires lessons in helpfulness and responsibility) while offering plentiful grace for error. Will my child withdraw his love later if I mess up along the way? Will my children offer grace for me, as I age? Will our family survive?
I don’t want to live in a place of fear—fear of abandonment in my old age or, worse than physical abandonment, emotional abandonment. And why do I even think old age is a promise? It is not. Recently, I attended the funeral of a friend who passed away at the age of forty, the second half of his life unlived. God knows, this moment, how and when I will leave this earth. The image is clear in His mind.
We live day-to-day—and do the best we can with what we’re given. I pray to issue more grace, not less, as I age. Strengthen me for Your tasks, Father. I am willing to be used, here, in the time You’ve appointed me to live on this earth.
“Look carefully then how you walk, not as unwise but as wise, making the best use of the time, because the days are evil. Therefore do not be foolish, but understand what the will of the Lord is.” (Ephesians 5:15-17)
Please like, comment, and share if you enjoyed this post. Thank you!
Hit the nail the head Heather. Miss you on IG but love reading your work here. I often think about how smart and quick witted I used to be before autism and hyper vigilance took over my brain and body 😩🤯🤷♀️.
You write so well, Heather. I’m always amazed at how you describe things. Thank you for being so open and sharing your experiences. Love you, friend!