Author: rebeccasumner

rebeccasumner https://rebeccasumner.wordpress.com
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Have fun! Don’t worry! …But you really can. not. lick. that…

So, this video is hilarious, right? We can all identify.

Several years back, following her debilitating and life-limiting diagnosis, we took my oldest to Disneyland. Fun was had by all. Mostly.

One aspect of her diagnosis was that getting sick was very dangerous for her.

So we had this toddler for whom getting sick was very dangerous. Let me say that again, a toddler. In winter. Traveling. And getting sick is very dangerous for her.

We couldn’t possibly make the choice that we would not take her out in the world, especially with a likely short life span. And it often felt like we couldn’t possibly take her out in the world. And that was before Covid. You all…

So, I adorned all her grownups with copious amounts of hand sanitizer bottles, like flare in office space. You need more sanitizer bottles. And I kept packs of ultra-strength sanitizing wipes in several backpacks and the stroller. Everytime we sat down on a ride or at a table, I did a quick and thorough clean before letting the toddler touch anything. And, again, this was before Covid. You can imagine what folks thought. But I didn’t have the energy to imagine what they thought.

And here is just one of oh so many moments where we’re playing gently, happily, and out comes the tongue to lick the steering wheel that probably literally thousands of kids have touched. 

I held in my body, in this moment and always, these competing stories of a kid who stays as healthy as possible and a kid who has a full and happy life, with a mom who is not constantly emitting stress vibes. My nervous system and already-grieving, already-traumatized psyche had to balance the fear screaming at me and the calm, joyous, unforced play I committed myself to.

I think I mostly rocked it.

But it also rocked me.

Using our nervous system to make things okay when they are not at all okay is a lot of work. And sometimes, you just can’t do it anymore. And sometimes, it’s all this work that no one sees. So you’re coming home from an 18-hourm non-stop shift and are ready to fall apart, but all around you, people are under the impression that you’ve been resting and playing all day. They might even tell you to calm down. To not be a germ-a-phobe. Because kids get sick. It’s just part of the deal.

Except, in this case, if she got sick she might lose her speech. Or her ability to walk. Or her smile (it’s incredibly common for kids with her condition to be physically unable to smile). Or her very breath.

So the grownups trying to cultivate a hybrid of wonder and health for medically complex kids are always putting their nervous system on this intense and high-stakes balance beam. Except no one sees them on the beam. No one is spotting them. No one understands all that they are holding and trying to carry in a way where their kid could never guess that they are carrying it…

And what if, what if someone was next to the beam? What if someone said, “I see you!?” What if someone cheered them on? What if someone was available to help them step off the balance beam and fall safely on a luxurious pad where they can skip sticking the landing and just fall safely apart in private but not in isolation?

Now that I’ve sadly dismounted my balance beam, I want to be there for other parents. Other folks wiping down surfaces at Disneyland. Other folks saying, “Play hard! Explore!” but having their hearts climb up into their throats when a toddler explores as they always do, with their tongues. Other folks who hear, “Calm down,” and “Kid’s get sick,” and look around for someone, anyone, to understand that it’s not that simple for medically complex kids.

So, I’m hoping to start a parent-coaching training ASAP and pair it with some disability studies, pediatric social work texts, and deep inner knowing to make the road I trod a little easier for a handful of parents. It’s already so very hard. Isolation and being constantly misunderstood or having your hard work missed, unsupported, unpraised doesn’t need to be a part of it.

And if you’re a parent with an immune vulnerable or medically complex toddler reading this and laugh/crying at my kid literally licking Disneyland…I see you. You are amazing! You can rock this! And, you can also fall apart. I hope you have safe places for collapsing. If you don’t, reach out. ❤️

The coaching program I’m looking at costs $5000. And I can start it as soon as I can pay for it. You can help me do this work by visiting my GoFundMe. https://gofund.me/4ddf6ab5 

Thanks!

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.”

Welcoming the wild soul

“The soul is like a wild animal—tough, resilient, savvy, self-sufficient and yet exceedingly shy. If we want to see a wild animal, the last thing we should do is to go crashing through the woods, shouting for the creature to come out. But if we are willing to walk quietly into the woods and sit silently for an hour or two at the base of a tree, the creature we are waiting for may well emerge, and out of the corner of an eye we will catch a glimpse of the precious wildness we seek.”

– Parker Palmer

“Momma, I love when we do the calm things. The smelly oils. The soft music. Sitting and coloring. Talking quietly. Can we do that even when we’ve not been upset?”

– Kid 2 Sumner

…

I’ve been paying close attention to my kiddo’s needs lately, as I feel they aren’t being met in her current situations. When she asked for this calm, quiet, spa-like space on the regular, I remembered Parker Palmer’s words. And I remembered my own soul is as wild and shy as anyone’s.

Grandma has kid this morning. so sabbatical looks like pre-cooking and freezing nutritious on-the-go breakfasts for kid so that she can eat while we walk the dog once i’m back to work and school.

It’s not really a rest. and, to the joy of my fundamentalist pastors of old, i’m barefoot in the kitchen…

but it’s sacred work.

Parker Palmer says that the soul is a wild animal. Not that she is fierce necessarily, but that she is cautious, savvy, shy. she only ventures out when it feels safe. she is only calm, still, receptive, when she is entering a safe space.

today’s sabbatical work is telling my own soul that i am preparing a safe world for her. that i know what is coming her way is too much to fit gently into the days ahead. that i, of all people, can be trusted with her tenderness and cumulative exhaustion.

i love when my soul comes out to play, rather than my worn out, highly performative, praise addicted false self. but so often the pace of my life (for literally life and death reasons most of the last eight years) feels unsafe for the wild and wonderful animal at the heart of me.

today i’m telling my wild soul that i see her and i am preparing safe space for her when school starts next week and sabbatical ends in two weeks and change.

And later, when kid is home, we’ll use the calm smells and sit down with Mozart and doodle along with Van Gough using soft voices as though inviting a doe to venture out of the forest.

…

I wonder if/how you are cultivating safe space for your wild and wonderful soul today?

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?

Why Parent Coaching?

Tldr: The first step on my journey to support medically complex kids and their families is a certificate in Parent Coaching. It will cost $5000. I need to raise $2500, kinda quickly. Read below for a story of a time I could have used parent coaching in my journey as a medical parent for a snapshot of one of my “why”s.

I knew it was the right thing to do, but I was too tired, too worn, too angry at a system that didn’t support me, too alone to access the things I knew.

Have you ever felt this way? 

Like there’s something hard right in front of you. And you know, somewhere deep inside you, how to step up and do it. But pain, isolation, and self-doubt paralyze you?

This is how I felt last year when my daughter was writhing in pain, needed meds, and needed her distonic body in a safer position than what she had moved herself into. At not-yet-seven, her muscles had superhuman strength, built up by her brain sending them messages to tighten, tighten, tighten. And to break the pain, she needed them to fold, release, let go. And to do that, she needed me to move them for her, against all the pressure her injured brain was putting into them.

I also needed access to her J-Tube port, which she rolled onto. And I needed her to roll onto her side to keep her from aspirating.

She needed all these things from me.

And, more than any of them, she needed love, guidance, and partnership in an unimaginable journey.

But I was tired. I was alone. I was grieving. I was mid-trauma. (My husband and I were diagnosed with PTSD but we always said, “We’re still in the middle of it, so it’s not PTSD, it’s just TSD). 

…So I was triggered.

What I needed, in order to be who she needed, was to step back.

Take some deep breaths, recenter, reclaim, and regulate myself. Let her live in that pain for just 30 seconds to one minute, so that I could meet her in that pain well and with love.

But how could I step back and breathe when she needed me and was in pain? But how could I meet her need if I didn’t step back and breathe? But how could I step back and breathe when she needed me and was in pain?

I fought her dystonia and positioning with my body as I fought a cycle of mutual suffering with my soul.

Eventually, I found my way to doing the things I needed. But not before weeping and saying,” I just can’t do this…”

Lately, I’ve been wondering how this journey might have been different if I had someone to coach me through it. To help me access the things I know how to do. To implore me to take the 30-60 seconds to find myself before helping her. To give me sincere and knowing permission to take the 30-60 seconds. To make my eyes acquiescingly roll at the repetition of a tired but true oxygen mask metaphor.

Parent coaching is a thing. But what parent coach could possibly have understood my reality in a way that gave me confidence that I could stop trying to explain and instead rest into their wisdom and partnership in this difficult parenting journey? Unless you’ve stood trying to self-regulate in the presence of a choking child in pain, how can you understand how very very almost nearly impossible that is?

Lately, I’ve been reflecting on how others have received gifts from the ways I parent. And I’ve been wondering if this deepest call in my life: to parent well, and with love, and toward a loving world, might be a gift I can share with others.

So, starting sometime in December or early January, I’m pursuing a parent coaching certificate. The goal is to offer free or very low-cost parent coaching to parents of medically complex kids or kids with life-limiting diagnoses.  As someone who has been – not exactly where they are, no two journies are the same – but as someone who has been on an adjacent path and understands a rare and lonely terrain.

And it needs to be free or very low cost because our medical and economic system keeps most medically complex families at or near the poverty line. We were told that if our income dropped below the national poverty line (which is way below the local poverty line) due to her needing my full-time care, social security would kick in just to get us right at that national poverty line (which, again, is way below the local cost of living). So, while paying for parent coaching is a worthwhile investment, parents of medically complex kids are already as invested as they can afford to be.

The parent-coaching program I’m starting costs about $5000. To keep my services at low or no cost, I need to not add debt to my family’s financial load. 

Will you help me start this journey of spiritually informed coaching for parents in hard spaces?

I’ll be working on setting up a nonprofit that can take donations. But until we get it up and running, the best way to partner toward this goal is to “gift” us via Venmo (@Rebecca-Sumner-8) or Paypal (@rebeccasumner1).  We have matching funds up to $10000, so to get to that initial $5000 for the first leg of the educational journey, we only need $2500. Ideally in the next week or two.