Permission to be who you are is empowering.

Give voice to the truth of your life.

Sarah smiling before receiving full dental x-rays, spring 2022

“Hope you guys enjoyed the holidays,” the dental hygienist commented to Sarah and me as we settled in to the cubicle where Sarah would receive her biannual cleaning. I nodded. “We did. What about you?”

The hygienist adjusted her face mask, slapped on exam gloves, and chuckled. “Well, we were off work for over a week, so I feel like I have some catching up to do.”

“Yeah, what do you do about that?” I wondered aloud. “I mean, since the dentist is taking a week’s vacation, that means all of the staff have to. So do you just save your vacation for the last week of the year?”

She shifted her weight and instructed Sarah to sit back on the chair, open her mouth, and relax. “Pretty much. Otherwise, we just have to take the week off unpaid.”

I noticed myself feeling aggravated by this. It’s not that I hadn’t heard it before, but it activated something else in me, a sense of injustice. Pausing to consider whether I should follow up with my knee-jerk reaction or keep quiet, I chose to speak up. “It seems unfair that staff members might have to take that week off without pay. Suppose they used up all of their paid time off throughout the rest of the year for sick kids or taking an aging parent to an appointment.”

She nodded. Using the polishing tool and paste, she began the cleaning and continued conversing with me. “I agree. I’ve thought about that. But there’s really nothing that can be done. It’s kind of like how dental insurance only covers about a thousand dollars’ worth of work over the lifetime of a person. And that hasn’t changed since the 1970s, even though the cost of living and health care certainly have.”

Now I was incensed. In spite of this, I was able to maintain a calm composure. “I think of all the people who are raising kids like Sarah —kids who have complicated craniofacial diagnoses —and the amount of oral, dental, and orthodontic work that is medically necessary and can be medically justified is still considered routine.”

She nodded again without verbally responding. I found myself staring out the window that overlooked the parking lot as I blinked back tears. Before Sarah was born, it never occurred to me that anyone around me might be the very person about which I was speaking: trying to eke a living while also caring for themselves and a family, maybe even an aging parent. That this person might legitimately wash up every last minute of paid time off work because of running someone to an appointment or caring for them if they are ill or recuperating from a broken leg or surgery, appalled me. Even more, that they might have no way to make ends meet during the required paid time off between Christmas and New Year’s, so they take a financial hit, made my head spin.

From time to time, I think about such things, with greater emotional charge than before Sarah’s birth. When I’m scraping enough money together for a few groceries two days before Ben gets paid, I think about it: Maybe this is the time I can get a “real” job, one that pays consistently, with set hours. I could do something part time. It would help with all these extra costs.

But the reality is that I would be the staff worker in an office where every last drop of my paid time off would be used to cart Sarah to her neurology appointment, then back to school —or whatever the appointment du jour happened to be that day. Sarah’s Apert syndrome has cost our entire family far more than most people understand.

The guilt of this admission tends to silence the rest of what I’d like to say: that Sarah herself is an incredible person, and I can see how much light and life she gives not only to me but to the people who work with her. It’s not about Sarah as a person, or the question of whether she should exist. I firmly believe that the world needs Sarah, and people like her.

What gnaws at my heart is that her diagnosis, while manageable (like other manageable diagnoses), is a bane to our family life. It has shoved us into a corner, in which our options are very limited. We live on one income because of the circular argument I mentioned above, the one I can’t seem to break: Maybe I can get a job. No, wait, I can’t. But maybe I could just work from home. No, wait, I can’t.

For the remainder of Sarah’s dental cleaning, I bantered politely with the hygienist. It’s hard to know who is able to receive another’s hardship, especially when each of us is carrying some sort of invisible albatross. Most of the time, I tell myself I can’t share too much, because the pain of our burden would not be held tenderly by most people. So, I refrain from the truest hardship resultant from Apert syndrome: the way it has isolated our family, displaced us from “normal” families, and made us an anomaly.

We are alone, because we have to live differently than most in our socioeconomic situation. Yet my heart is perpetually torn between the level of privilege I know we have and the lack of others who do not. Attempting to squeeze into the mores of middle class society, of which you are a part and into which you were born, when you are a caregiver to a medically complex child jostles you. You are keenly aware at all times that, while you appear to fit into this middle class social structure, you, in fact, do not.

Sarah had a counseling appointment in the afternoon of the same day as the dental cleaning, and two different appointments in one day just zaps my mental reserves. I was weary and worn to the bone. Yet I knew I’d walk into my home, filled with four other little humans and my husband, all of whom would require something of me. Or need something that I couldn’t give, and they would not understand why I couldn’t give it.

Upon entering our home, I offered my family a half smile and one-armed hugs, and plopped myself at the dinner table to eat the food I had prepared hours earlier, which I instructed Ben to place in the oven at the proper time. Felicity, now thirteen, approached me with pursed lips, and I knew I was in for some sort of verbal assault. “At Papa’s birthday dinner, you said how grateful you were for all the family trips he planned when you were growing up. How come we never get to go on any vacations? Huh?”

When the well has run dry, what do you do? I turned my gaze toward Ben, pleading with my eyes for him to intervene. He rubbed his goatee, as he always does when he’s thinking intently, and sighed. “Felicity, not now.”

She huffed and stomped out of the room.

It all hurts, all of it. This life, I guess, of being a mom and attempting to clumsily navigate what that looks like for our odd gaggle of geese. Of being a mom-caregiver, too. That’s what hurts the most, what widens the chasm between me and the community I built before Sarah was born, the one that has now moved on to immerse themselves into the cultural expectations of a household with dual incomes and a couple of (neurotypical) kids to raise.

The advice I was once given by another mom-caregiver who dropped off a hot meal when Sarah was a week old echoes nearly all the time: Don’t treat her differently than the rest of your kids. She is different, but raise her as normally as you can.

I’ve tried this. And I’ve failed at it. I’ve failed my other children by forcing all of us to act as if we are just like our neighbors —with typical frustrations and setbacks, like bad grades or a bad cold. And, I now can admit, I’ve failed myself. What I’ve neglected to do is be fully transparent to the people who matter most in my life, because my assumption is that they either do not want to empathize with my struggle, or do not know how to. Even on the page, like now, I fear that my words sound whiny, privileged, hyperbolic.

And maybe they do. But what I’m doing right now is allowing myself to feel the defeat that engulfs me from living, these past ten years, with Apert syndrome in our family. Sarah is the one who will live with the mocks and stares and questions, yes, but each one of us in this household must live with the time that’s been stolen by hundreds, maybe thousands, of hours spent poring over medical paperwork; or hanging on the hold line while making an appointment; or checking with insurance about a prior authorization; or driving to and from a check-up or pre-op intake or post-op follow-up.

In many ways, giving ourselves permission to feel what we feel is difficult, because we’ve been conditioned to believe we can’t express what some call negative emotions. (I prefer to refer to them as dark emotions, based on Dr. Miriam Greenspan’s work.") We’re convinced that we must perform for others, to placate anyone —a cashier, a doctor, a neighbor, a parent, a friend —because we don’t want to upset anyone, don’t want to ruffle feathers. The ways in which people grow uncomfortable when you are transparent is yet another drain upon our emotional capacity, so we avoid speaking the deeper truths about how we are hurting, maybe constantly.

Permission, then, must first involve a dive into oneself, where the admission of that awful thing (fear, anger, self-pity) is unearthed, then spoken. When we give voice to the truth of our lives, we gain clarity. Permission to be who you are, as you are, in this moment can empower you. It doesn’t mean a disregard for your fellow human. On the contrary, self-permission makes you more alive to experience whatever web of emotions you find yourself entangled in. And then, once you’ve found your way out of the web, you can share yourself with the few (maybe only one) who will receive your mess with generosity and care.