When Does Comfort Come?
by Laura Camacho
I’m writing a note to my 9-year old daughter’s school and I can’t stop crying.
Every word feels like a sob. I’m coming off as calm on the page, but beneath each sentence lies soul crushing exhaustion and heartache.
She needs to have Wednesdays off again, like last year…she valiantly holds herself together at school, but crashes hard when she gets home each day.
I’m trying to find the balance between authenticity and professionalism. I fear that they won’t even believe what I’m saying, since they never see this side of her at school.
…We need to make space for her to calm down her system midweek, so that our weekends are not given over to wall-to-wall meltdowns and basic recovery before the new week begins.
She doesn’t have an official diagnosis other than 2e (that’s “twice exceptional” – it means she’s super advanced in some areas of development and super low in others; this asynchronous development creates a wide array of difficulties). The now-two year old neuro-psych evaluation also red flagged her for possible ADHD, SPD, dysgraphia, dyslexia, and “clinical levels of Anxiety.” We haven’t had a lot of help navigating any of her issues, other than the solid year of OT for her motor delays and sensory processing when she was 7. It’s mostly been me, late at night, fumbling around on the internet, trying to figure out what diagnosis patterns fit our lived experience.
So I agonize over this next sentence for almost 20 minutes. It feels true but must surely seem an exaggeration:
(For what it’s worth, even though I know that the Anxiety is a very real thing, what I’ve learned about parenting a child with high-functioning Autism is hands-down the most helpful…)
I feel like a fraud on the surface: “playing the Autism card,” but in my heart I know the truth. This is the most accurate way to describe our experience.
And no one else sees it.
No one sees the meltdowns like we do. No one gets the brunt of the verbal abuse like I do. No one else wakes up every day on eggshells, wondering if the day will start with screaming and crying.
She hides it from everyone as best she can.
She is swimming in shame about herself. No life preserver I’ve thrown her has brought her back to shore. I think of her as an amputee – somehow, at some time, her self-confidence was severed. There are phantom “pains,” where she feels good about herself and her accomplishments, but they are fleeting. We have to prove our love to her afresh, each day.
Her status quo is a deep doubt of her own self worth.
I beat back the accusations that somehow I wielded the knife that took it from her. What did I do wrong? At what point did I take the wrong path to the point of no return? Was she always like this? Did I just not see it? I am grieved by these thoughts.
I’m still crying over this.
The tears are always on the surface right now. I’m trying to keep them there. Maybe if they aren’t dammed up, they’ll eventually just run dry.
I had the meeting this morning.
I cried more than several times, but they graciously did not acknowledge it.
I was strong. I did not give in to the irritation and skepticism of the vice principal who didn’t appear to believe that it’s anything but a parenting issue (since the problems only crop up at home, it must be our fault). I only internally rolled my eyes at his suggested book titles and URLs to parenting advice videos.
I walked out feeling proud for standing my ground. And I wept in the car before I drove home because I felt unheard and misunderstood. Even though they are cooperating (let’s be honest: I didn’t give them a choice), they don’t really understand our situation or the struggle our daughter endures every single day. Aside from the social awkwardness that she cannot hide, she keeps everything bottled up inside, waiting until she gets home to finally let down her guard and fall apart.
It has gotten better, I think. Different, at least.
When she was 7 and 8, she internalized all the frustration, rage, and angst. During a meltdown she would frequently express the desire to kill herself to end the psychological and emotional pain she was enduring. We were afraid to leave her alone.
In the last 9 months, I’ve been the target of her meltdown rage, which is awful and soul-shattering, but far superior to her internalizing it. It’s been a while since I’ve feared for her safety or kept careful mental inventory of the kitchen knives.
Over the past year, I’ve been working very hard to remember not to address her behavior or language mid-meltdown, but to keep my focus on reassuring her of my love and waiting it out with her. It has been a deeply humbling, draining, and liberating.
I’ve even mostly gotten to the point of not internalizing her meltdowns as a judgment on my own parenting ability. And I’m continuously working on maintaining my confidence when people feel compelled to offer mostly well-meaning and almost always off-the-mark advice that ends up sounding like judgment on my ability to parent my own child.
But I mourn.
I grieve the difficulties she faces. I lament how hard daily life for our family can be. I weep at the comparative ease of parenting her siblings.
It’s not that I haven’t accepted her for who she is. There are just as many things to celebrate about her as there are to mourn. But the cause for mourning is very real and very raw, and in our faces every day.
When does comfort come, then?
Our equation surely cannot be: First mourn, then comfort. For this kind of mourning does not cease. It is as relentless as the grind of getting through a day with hearts not split in two.
I don’t know.
I don’t know what comfort looks like in this part of my life.
Comfort certainly is not the reward for – or cessation of – mourning.
Maybe comfort is simply a tiny bright thread that weaves through a tapestry of pain and disappointment. Or the small constant spark that enlivens a mourning heart to keep moving forward – even if the momentum is founded in grief. Maybe Comfort elbows its way into Mourning to make space for Joy to arrive, despite the Everything Else and All of the Above that troubles us.
I don’t know, really.
All I know to do is to keep showing up every day. To allow for mourning. To make room for comfort, in hopes it some day comes.
About The Author
Laura Camacho lives in Oregon with her husband and three kids. She’s the Editor in Chief at Glimmering – the company she cofounded with her husband, Leslie. Together they broadcast a weekly podcast about business and relationships.
This post is part of Survivor Songs, a 31-Day series. A full list of posts is found here.