anxiety

Learning to be an emotional sherpa for her (and me)…

“Our brains are continuously yearning for the arrival of a co-organizing other”
– Bonnie BadenochThe Heart of Trauma: Healing the Embodied Brain in the Context of Relationships

“Helping her breath through a micro mountain range was absolutely me living my best life.”
– Me

“I let myself have a moment to grieve for four-year-old me who was taught that my emotions were a problem, and never sherpa-ed (is that a word-adjacent term?) to the valley after the mountains of so much that didn’t feel safe or good to me.“
– Also Me

A couple nights ago, kid got mad at an iPad app.

(I let her play on my iPad very sparingly. I really wanted a five minute shower and no other grownups were around. so babysitting via screens.)

She threw the iPad on the floor and began to weep bitterly.

I told her I could fix the problem in a matter of seconds but i needed her heart and body to be calm first so that we don’t risk her throwing the iPad and breaking it.

We went back and forth about how she should but wouldn’t calm down.
I reminded her that it is ok to just be so sad and want to wiggle our bodies with big sads and mads, if we do so safely. I reminded her that if she wanted to demonstrate her feeling by throwing something, she could do that. but it needed to be a pillow or stuffy.

If her goal was to finish her game on the iPad, her body needed to be calm enough not to hurt the ipad.

It was ok if that wasn’t her goal. But if it was, we needed to find calm together.

Finally, the heart of it:
“But i don’t know how to be calm!”

I asked if i could hold her hands and help her breathe.

We pretended her left pointer was a mountain climber climbing her right fingers.
on the climb up her thumb, she breathed in through her nose. on the slide down the crevasse between her thumb and pointer, she breathed out through her mouth. and we did this for each finger.
she began to settle. but she wasn’t quite there yet.
I asked if her pointer needed to climb the mountains again. this time through she didn’t need me to move her pointer.
She found her calm and got a little more iPad time.

As I felt my and my partner’s discomfort with her loud extravagant emotions, I realized the reason I wanted her to *just calm down* is that so often, I also “don’t know how to be calm.” so I fake calm. and it’s effective. Until the next thing happens.

And I found my discomfort with her big demonstrative feelings fade when i asked myself, “What greater thing could I possibly do with this exact moment than help a small person discover they can do what most adults can’t do because we were told to “just calm down.”
There was no available greater purpose for those ten minutes.

Helping her breath through a micro mountain range was absolutely me living my best life.

And I let myself have a moment to grieve for four-year-old me who was taught that my emotions were a problem and never sherpa-ed (is that a word adjacent term?) to the valley after the mountains of so much that didn’t feel safe or good to me.

And then i said, “ok. that’s enough iPad. let’s do something silly.”

Why I’m going back to grad school after swearing it off…

Let’s raise children who won’t have to recover from their childhoods.”
― Pam Leo 

“And if a childhood might be their entire life, let’s raise children who get to live that entire life wholelly.”
– Me

Tldr: I share my “why” for my new grad degree and ask for help with the first payments due Monday and March 1. You can contribute through GoFundMe here. Or on Venmo @Rebecca-Sumner-8. Or PayPal @RebeccaSumner1. For Zelle, email me rebeccajoysumner [at] gmail [dot] com.

…

When I finished grad school *for the second time* almost 14 years ago, I made myself a promise that I’d never do it again. I mostly enjoyed it. I was pretty good at it. But there had been a few too many incidences of me trying to bring the real world, marginalized people, huge problems that humans were facing, huge problems creation was facing, and theology wasn’t addressing practically, and the academy didn’t seem interested. I found my soul worn out from trying to reconcile the school work I was doing with the aching reality my body was screaming at me that this isn’t it. There was this constant emotional labor to calm the deep knowing in my gut that the, largely white cishet affluent (or faux affluent via student loans), theological conversations we were having didn’t meet the needs of God’s good world.  

My academic work became less diligent as too much of my energy was diverted to quieting the voices asking, “What is really going on here?”

So when my integrative project came back with a B and the statement that the professor didn’t want to read something that made her feel bad for being white and middle class and living with ease in that space and that my paper didn’t seem to reflect enough the particularities of the school I was at, for a moment I tried to pretend I enjoyed the invitation to re-do it for the A. But then, I accepted the B as a truth-telling letter about my residual energy for academics with a soul champing at the bit to actively participate in building a more loving and just world.

This is not meant as a diatribe against my second grad school. My first grad school? That one, I have an entire anthology of diatribes against. Give me a prompt and I’ll deliver you a scathing review. But my second grad school was largely a healing experience. And I also happen to know they have been faithful to ask hard questions and continue to grow toward broad and aware justice. So, I left feeling holistically done with all things school, but they continued growing into being a holistically good school.

What this is meant to be is a statement that me going back to grad school is no small thing.

In my younger years, I enjoyed collecting letters after my name. In these older years, time is too fleeting and the economy is too intense to go on collecting letters. I’d be happy to just say Rebecca Joy Sumner MA, MDiv, BAF SFT (broke A-F, so f-ing tired).

But, through the traumatic experience of parenting a child severely impacted by disability and living with a life-limiting diagnosis, that same heart, impatient with the academy and longing to get my hands dirty in the work of crafting goodness, had a window opened on a gigantic mess that could, at very least, become a beautiful mess.

Psychological resources for children severely impacted by disability or facing life-limiting diseases are far, few between, and simply missing the heart of kids.

…

When my oldest developed dangerous somatizing anxeity, we had to plead with a psychiatrist to treat her before she turned six. She died at six. So, if we gave up on this, we would have given up on her whole life mental health. Finally, we found a psychiatrist. His prescription made a clear difference in her physical symptoms. He referred us to a counselor. She had openings for us every six weeks. But when you’re persistent widow and the judge says, “you can have justice for an hour every six weeks,” sometimes you just take it.

That counselor, when she met with my child who was physically unable to speak and, at that point, also physically unable to talk via buttons on an iPad, she read her a social story – and I am neither making this up not exaggerating so that you’ll contribute toward my grad school – she read her a social story about a boy who was anxious but felt better after he *told his parents what he was anxious about.* 😳 Ok, but not that emoji, as a parent of a kid who might be in her last year of life and who is suffering greatly with anxeity, it’s not the 😳emoji, it’s 😭 and then more 😭 and then 😭😭😭😭😭😭😭😭😭😭 ∞.

I sat there stunned. I tried to make it okay for my kid. Maybe that was the wrong choice. I went home and got her settled then wept in the car. But I took five or so deep breaths and moved on.

…

I reached out to her developmental neurologist. By the way, developmental neurologists are the very best people. She had three in her six years and each was bent on highlighting her humanity, honoring her hopes, and seeking her full dignity. Love developmental neurologists! So, I reached out to hers. She knew this wasn’t right and wanted to fix it. But, sometimes I think pediatric providers wish resources were available but either know they aren’t and ignore that knowing or maybe shield themselves from that reality because, fuck, how do you keep meeting with suffering kids and saying, “there’s just nothing we can do.” I can fathom that.

So her developmental neurologist referred us to an anxiety group therapist through the local Children’s Hospital. She got right back to me to assess what my daughter’s goals would be in the group. “What triggers her anxiety?”

“Lots of things. Primarily laying on her back.”

“Ok, do you have a sense of what she fears will happen?”

“She worries she’ll throw up and aspirate on her vomit due to a neurological swallowing disorder.”

“Ok. So, could our goal be to have her lay on her back for 30 seconds, one minute, five minutes etc and observe that she is safe and doesn’t need to be anxious?”

“Probably not because it’s likely she’ll vomit and aspirate. Even if just for a moment before I get her on her side. But a moment of choking is new trauma.”

“Yeah. So our group is for helping kids face anxiety triggers and discover that they are not real dangers. I just don’t think our group will be a good match for her as it seems that her triggers are genuine dangers.”

“So, where can we go to get her help?”

“I’m so sorry. I don’t know of anything available.”

…

There wasn’t *anything* available to my daughter. Now, maybe there are plenty of people doing this work – scratch that – maybe there are many people doing this work. There are not plenty. Because I searched and searched and social workers and medical practitioners and a devoted pediatrician looked and looked and my kid’s life ended without her ever receiving viable help for that anxiety.

…
Instead, what she got was just like her covid era home special ed schooling. Home-therapy-ing. I did my best. I read books. I listened to podcasts. I read her face. I listened to her groans. I came up with ways to break her anxiety when it was somaticizing at its most dangerous. But her very real fears were never cared for as they deserved to be. 

And like myself in the later stages of grad school, I am wholly impatient and full of holy impatience with this gap in care for sacred souls facing medical traumas and life-limiting conditions. 

…

And as much as I learned the gap of this care in the world, I learned it in myself. I feel I have innate qualities that make me good at this work. I believe my daughter taught me how to listen deeply beyond words to the hearts of children in a way that makes me good at this work. But! I have no real idea how to do it.

…
So, I’m transgressing my promise to myself and returning to grad school. With hopes that children won’t have to “recover from their childhoods,” and that children for whom childhood is their whole life can live that life wholly and meet their endings with peace and a deep sense that they have been loved, cared for, heard, and that they have participated, as we all long to, in building a more loving and just world.

…

So, the pitch: the MSW I’ll need to do this work will cost me $55,000. Add to that $5,000 for a parent coaching certificate so that I can also walk alongside parents like myself, $60,000. We don’t qualify for any grants. And subsidized loans for grad school have disappeared (call your legislators please). So, I’m hoping my community will join me in coming away from this without debt so that I can help those who need help without figuring out if the particular insurance they have will work with me. When you have six years to live, six months of looking for a therapist who takes your insurance is not time you can afford.

The first $5,000 is due on Monday and another $5,000 in March. 

We have up to $10,000 in matching funds from one of my daughter’s biggest fans. Currently, we’re at $800, matched, $1600. Will you help us get to $2500 (matched to $5000) by Monday and $5000 (matched to $10,000) by March?