What a lucky earth. What a lucky life.

– Moudi Sbeity

What a lucky earth. What a lucky life. What I mean when I say love. I don’t want to write about the kind of love I think about twice a day when I brush Colby’s teeth, when I brush and braid her long hair. I don’t think I’ve ever put it down on paper in words, the love I feel, the love behind the ordinary tasks of caring for another body. I could leave it at the obvious layer. Of course you brush a child, a young adult child’s teeth. Of course you brush and braid her hair. But here’s what else is happening.

Here’s the coal firing in the love: When I brush Colby’s teeth, I’m thinking about the hundreds of years of Colby’s spiritual ancestors who were institutionalized. I think about what I don’t want to write down. I think about how these ancestors, their teeth were pulled, all of them. Their teeth were pulled to make less of the person, less of their body to care for. Their teeth were pulled so there was no need for dental care. Their teeth were pulled so no one had to brush their teeth, so they did not need toothbrushes or toothpaste.

Their teeth were pulled also for their “feeding”, again for the ease of those whose work it was to feed the institutionalized, and for the cost of that work. Without teeth, they could be spoonfed a few large spoons of gruel, three times a day. No chewing, no cutting, no separate foods or dishes. The order for “feeding”, no more than 15 minutes per “patient”.

What I mean when I say love is, I want Colby in her way to feel What a lucky earth. What a lucky life. I want her to feel that in her life, under her feet, in her day and I want to feel that toward her. She is my moon. Rising and setting, waxing and waning, governing my days, weeks, months.

What I mean when I say love is I think about the ancestors as I brush Colby’s large, healthy, white teeth. I care for her teeth as a gesture of healing toward this deep energetic pain, this wound we all feel in some way, for how people have been treated, dehumanized, abused. The opposite of love.

And their hair was shorn, men and women, for lice and for no need to care. So we let Colby’s hair grow long down her back. When I brush Colby’s mink brown hair, I imagine hundreds of ancestors waiting in line, in a long light filled room, feeling the love of someone brushing their hair, caring for their bodies and the soft feeling of their aliveness because this is what I mean when I say love.

Breakneck Ridge Trail Race 2026, I Want to Remember…

I want to remember the race yesterday. Starting with the day and night before. I felt discouraged for the drive hours before we left. I want to remember almost giving up in degrees, over and over. Arriving late, 11:30 pm, not wanting to set up the tent. Not wanting to be outside without running water. Wanting a shower and sheets and ease. I looked up hotels but phone reception was slow so we got out of the car to find level ground. I want to remember how easy it was to set up the tent even though it’d been two years. We could see the silhouette of the mountains I would climb tomorrow, dark against the starry night sky. Coral asked, Can we have the front facing the mountains for morning? Planning her view, planning for beauty. And what we didn’t know was that the sun would rise over those mountains.

The night was cold and windy and I had pre-race anxiety dreams all night - driving to the finish instead of the start, forgetting my shoes, sleeping through the alarm, falling and getting hurt. Could these anxiety dreams be looked at as a form of love? Do they mean I really care about the race, about running? Or is it simpler. Anxiety about a start time and location, and knowing the running will be hard.

I want to remember that even with late arrivals, setting up a tent, no running water, a freezing and fitful sleep, no hot coffee in the morning, by the time the sun crested the mountain and I was deciding which shorts and socks to wear, I felt the familiar excitement.

It runs like a vein of glitter through my chest and sternum, light and reflection, the Milky Way sparkling on the sea. I want to remember the excitement

Coral, sleepy, excited too. I want to remember the hard, odd things we like to do together. Like this, camping, a grassy field, porta-johns. I want to remember finding Sheena and feeling the rush of memories, so many race mornings together. We ran this race first in 2017. She won one year and her prize was a peach pie.

I want to remember the 150 or so runners funneling cooperatively through the start shoot. Saying, Good luck, Have fun out there, See you at the finish, Get after it, Shred. I want to remember Coral offering to take photos of couples together at the start when one partner was taking pictures of their racer. I want to remember how I took this thoughtful reach Coral makes to strangers with me onto the trail and offered twice, many miles later, to take photos of families out on a Sunday hike. I want to remember how everyone says yes when you offer this.

Here’s what I really want to remember - the blueberry flowers. How small and precious, how they look like a promise or premonition of blueberries. In the ecosystems at the top of the granite mountains, tableaus of blueberries grow low and hardy. I want to remember how it felt to see wildflowers after the long winter - Dogwood, Azalea, Violets, White Trout Lily, Red Columbine, Mayflower - the beauty like a mother’s kiss to a beloved child.

I want to remember the top of the first major climb, looking down the deciduous treeline to the river far below and a hawk gliding on currents. I want to remember that we climbed above the hawks. So high! Pink Azalea bloomed in the crevices of the ridgeline.

I want to remember the care and pumping music of the aid station. The direct gaze of the man pouring water. His yellow windbreaker and blue plastic gloves.

I want to remember connecting with the precious lesson of endurance - discerning between the body and her needs and limits, and the mind and its narrative about what is happening. The race was almost 15 miles with 4,800 feet of climbing. Boulder climbing where you have to use your hands. The last six miles, the exertion peaked and the mind games made their slow creep. I want to remember how my brain panicked, This is too hard! And pointless! What am I doing? I want to remember when I turned to my body and asked, how did I feel, really. My body calmly responded, We’re good, eat some food, drink some water. We got this.

I want to remember how the mind gets exhausted, overwhelmed, and protective of the body way before the body reaches its limit. I suppose I should speak personally, what do I know of other bodies and minds? Only what they tell me. But this, in a hard race, is where you see it. The final miles at 9, 10, 11 through the finish at 15, is where a 56 year old woman passed pockets of young, 20-30 year old men littered along the trail. In the vernacular, the wheels had come off. A few of them were cramping badly. I passed out salt tabs like a den mother.

And you can read on their faces that many were in a mind hole. It’s been too hard for too long and they don’t know how to leave their thoughts and enter their body again. I’ve been there. It wasn’t until I reached again and again for harder and harder that I found the question. The brain, I can’t go on. Then the mind, Is that true? And then dropping like falling stars or sediment or deep sea diver, my attention away from the brain and thoughts and into the body. Can I go on? Inevitably, 100% of the time so far, the thighs, the mighty quads, the glutes and tendons lacing up the ankles, they sing, Yes, they sing out, Yes, yes we can go on. Tired but still with stores of calorie and power.

The body speaks - There is near fathomless power here in the galaxy of our stardust bodies.

I want to remember how true and how fascinating this is. The parallel and then intersecting narratives and experiences of our body and the driver, the mind. I want to remember how the macro mind, the mother loving witness mind that can ask that question - Are you ok? Can you go on? And ask it not of the human (ego?) mind, but of the infinity and mystery and power of the body, the whole rest of our life experience, and listen to the body.

I want to remember how it feels to have this conversation again. How it feels like this conversation is the whole thing about running. I want to remember how it feels to consider this is not just about running. I want to remember. The microcosm of a race, of something absurd, arbitrary, and contained that makes you do something more intensely than when alone, it is like a fairy tale you are writing for your life. Starry nights, friends and family, and finding strength you did not know was there.

“Umm, no?”

“Today would be Grandpa’s 100th birthday”

Oh my freaking gosh. Grandpa Peace, present with his guiding love, still. Nudging me to give Meredith a wink from him on his birthday. How he loved her. How he loved us. How he loved the world. Happy birthday Grandpa Peace.

My story began when I lost myself in laughter with Meredith. When her grandpa, Grandpa Peace, told us the grapes on the arbor, along the fence, didn’t taste sweet like grocery store grapes because these here, growing hot and wild, dark purple and dusty, were wine grapes.

My story began when Meredith and I picked containers and sold them door to door for one dollar, a fortune to us.

My story began in the belly of her confidence. Confidence in her charm, confidence in us.

My story began when we ate dusty purple clump after sour, dusty purple clump, squealing at their tannic bite. My story began then, when we staggered and laughed, convinced we were drunk for the first time. Knowing nothing of the rot and ferment that creates alcohol.

To us, the world was made whole. Wine grapes were wine.

My story began with how kind and game her grandpa was when we told him - no shame or hiding it - that we ate a lot of grapes and now, we’re drunk! Staggering, holding each other up, laughing so hard we fell over, laid on our backs, looked up at the blue sky, and felt our story begin. The first time we got drunk on wine grapes. My story began when Grandpa Peace said, “Well no driving til you sober up,” and we curled into ourselves laughing harder, howling with laughter. We were nine.

It was the only actually fun time drunk I ever had.

My story began when it took us years to realize we had in fact not yet been drunk. Unless you count the elixir of friendship, fruit sugar, and sunshine an intoxicating substance. Which I would. My story began before or despite the sadness of the adults around us. My story begins here, in this girlhood joy, this friend joy, this unselfconscious willingness to be high, higher, highest on fruit, sunshine, and each other.

Last week Tuesday I got an email from Suburban Propane at 5:17 pm saying our fuel would be turned off, the next day. It was so unexpected, I first thought it was a scam email. To be sure, I logged into our online account. Sure enough, we were $3,000 behind in our bill. I flooded with a lava surge of fear and panic. How had this happened? I did the pre-buy, I had an autopay set for every month.

I called. The office closes at 4pm. So we might lose our heat and cooking source by the morning? I called the second they opened Wednesday at 8 am. I put enough of the balance on a credit card to keep our power on. I asked for an appointment with a manager so I could figure out what went on.

It was a series of mistakes that there is no point in getting into. On top of a mistake with the pre-buy, there is the doubling of the price of propane, and a historically cold winter wherein we used more fuel than usual.

What I want to write about is the shame I felt. Shame I felt Wednesday when I put some of the bill on a credit card, shame I felt that I did not have the money to pay a utility bill, shame I felt that Coral could hear everything, shame to be a parent worried about a utility bill, shame at the stress she would feel, hearing my stress at not having the money and getting unknowingly behind on a bill. I felt dyed, poisoned by shame when I left the house and gave only a curt, not a loving goodby, because I was distracted and angry at this feeling of overwhelming powerlessness.

This question, again, for the millionth time since becoming full time caregiver, How the F*&#K to economically survive?

I mentioned my shame and the lasting sting of its emotional lash to my therapist on Thursday. And what she said shook me. She said, It makes me think of how so often the victims of sexual assault are the one that carry the shame. You are a victim of a system that does not value your daughter and therefore your work. This is financial abuse, abuse of power. You are financially victimized, systemically, and yet, you feel the shame. You are not the one that should feel ashamed about struggling to pay your bills. The system should be ashamed to have abandoned its most vulnerable.

This is moderately paraphrased but it shook me because it is true. And because the idea of being a victim is something I want to deny to the core of my marrow. That is not an identity I relate to, I think of myself as strong. But I know, I know in my heart, strength has nothing to do with it. I will not use my strength to deny the heartbreaking reality of widespread economic violence against the majority of Americans at this point in time.

I will use my strength to soften. To ask for help. I tucked my pride back on a shelf, felt the vulnerable belly of need, and asked our community for help. Within 24 hours we raised enough for our bill. We will use anything over for next year’s pre-buy.

When you don’t have enough, these are the things that can sink you - a car repair, a root canal, a $3,000 heating bill when fuel doubles in price.

The greatest power, protection, and beauty we have, still, is each other. I am so grateful. From deep shame to a fathomless gratitude, in just a few days.

What a remarkable journey it is with Colby, to try to comprehend again, the dignity inherent in giving, needing, receiving help.

https://gofund.me/propane

(saying goodbye to Alex)

I haven’t been here in a while, though I have been writing plenty, because I don’t know what to say. I could write about food precarity, well before SNAP was suspended. I could write about trouble in the drug supply due to tariffs and what that means for Colby.

I could write about how I got to go run in OR on trails that were so beautiful I wept. I could write about saying goodbye to our beloved caregiver Alex before she moved. It all begins and ends in the same place. We are so very vulnerable. The only safety is each other. Life is full of people causing intentional pain, and people bringing intentional love and hope. Here we all are, existing in the spectrum.

I really want to write about how I decided a while ago, inspired by the podcast The Telepathy Tapes that whenever I gazed at my children, my husband, the cashier, the person asking for money at the intersection, I was going to “fill my mind with love.” I do this by saying that sentence, “Fill your mind with love,” and there is a 100% guarantee that this lifts a small smile to my heart no matter what worry is also circling the drain of my awareness.

Worry like the massive disruption to care that I did a fundraiser to cover loss of care services for Colby back in April aka PPL. PPL continues to suck and be problematic for the entire state of NY. This is one specific place that I get to rub uncomfortably against the terrible feeling of impotence to protect my child in the face of inhumane, for profit systems proliferating in every vein of the medical/disability industry.

I spent a fruitless hour on the phone this morning. Trying to get a person paid who worked hours with Colby and is not being paid because of a problem with the PPL system. No fault on our end, and yet it has consumed 9 hours and counting of my week, to get a caregiver paid.

Now, I get to do what 20 years of practice has taught me: I get to meet Colby with a smile. Fill my mind with love. Not carry over this frustration and fear into my interaction with her. I get to do the most positive version of compartmentalization I know. I did not always know to do this, did not have the discernment about where problems began and ended, did not know how to leave my frustration at the system at my desk in order to greet the innocent, vulnerable heart of my daughter with a heart and mind full of love.

“Fill your mind with love,” I remind myself one hundred times a day. If nothing else, it calms my heart to face the question we are all facing: will we as a country, as a collective, decide/remember we are each other’s responsibility? As poet Gwendolyn Brooks reminds us, “…we are each other’s magnitude and bond.”

She needs other people's hands for this. 

Colby’s nose ran a constant slick of snot, all night. I wiped her nose every few minutes from 10pm until 3am. In between, I slipped back into my own bed, only to hear her struggle to breath again. Rise, wipe, stroke forehead, get back in bed. Over and over. By 12am my body thrummed, charged by the stimulation of a repetitive task, the stress of reading another person’s body, a quiet house, and space to think.

I thought about Colby’s body. All that snot. Her apraxia. All that snot and her arms stay in place, tucked up to her chest, her hands in soft fists that do not wipe at her nose. Soft fists that do not wipe her hair out of her face, do not lift the covers up to her shoulders when she’s cold. She needs other people's hands for this. 

She needs other people's hands for this. 

I laid in bed, got up again, wiped her snot and stroked her forehead, got back in bed, tucked my own covers up to my chin and thought again, about life in her body. It’s not that I try to imagine what it would be like to be in her body, try to imagine what it would feel like to need someone to help me breathe and keep my skin comfortable, someone to change my heavy,soggy pillow out from under me. I know I can’t imagine it.

But it does create a reverence for the labor when I understand myself to be the one who supports the body, my daughter, who needs this care.

So I guess I’m thinking about myself. What it means to be the person who wipes, who soothes, who wonders and anticipates. The person who listens to the sound of another person's breathing and knows when the mucus needs to be wiped and rises, again and again, in the night. For twenty years.

I keep a leash on my thoughts when I begin to imagine the people who need other people and do not have care. 

She needs other people's hands for this. 

The millions of people over the decades who have slept in pools of their own snot and bodily fluids. The millions of people whose basic needs were not met, are not met. I imagine Colby in an institution in, say, 1910, and the history I know from that time. It makes my body cramp with grief. What dire, relentless anguish echoes and haunts over the years because some people decided some bodies were not worth the care.

Then I walk myself, my thoughts and ruminations, back into the room I’m in. With my beloved daughter sleeping one room away. I can hear her, I can smell her. And she, me. 

She needs other people’s hands for this. 

I fell asleep thinking of earlier in the day when Colby and I sat together on the couch. Before her nose was running, when I was not so tired, we sat holding hands and I felt how her palms have changed texture, her hands feel like grown up hands now. I thought about what changes and what does not in a life of care. She will always need other people’s hands for so many of her basic needs. The feeling of her palms, how generous she is in how she sits, how capable she is at being present, what lovely company she is. This is how she takes care of me.

She needs other people’s hands for this. 

And you know what else she gives? The shining, ringing bells of purpose. The most necessary feeling, the most beautiful song in the world.

I will let the want into my body,  bless the heat under my skin. Credit: line from “Idea” by Kate Baer

I will let the want into my body, bless the heat under my skin. Was that a mask? An armor? All the ways and years I did not let myself want? And what happens when you can’t plant a want? I found myself wishing I’d planted vines that smell good around the house, wishing I’d done that 20 years ago. But I didn’t then. But I could do it now. I could plant the American Wisteria on one side and the Climbing Hydrangea on the other. But to do that I’d have to make a claim on what I want. I’d have to dig a hole three times larger than the root ball and plant it. Then it would mean something and it's confusing right now, right in my heart, how scary this feels. To plant. To want something to grow. To want it to climb the sides of the house I want to stay in. To imagine how in 20 years the wisteria fragrance might come in the open bedroom windows on a warm summer night. And I’d think back to how wanting led to planting led to having and that's the scary part, the thing I’m always or often trying to protect from: what if I want and do not have. What if I plant and it does not grow. Can I let the want into my body and bless it? Start there?

I will love and be loved. Credit: line from “Idea” by Kate Baer

I will love and be loved. Coral called every night, giving us her news from camp. The speed and thrill of rowing, racing in a group of slim white boats slicing the wide Tennessee River. The special day of white water rafting. The boy who wears diamond tennis bracelets. The kids who because of their ethnicity are now afraid to fly home Saturday. Coral talks to some of the boys who are afraid of what they might experience and they plan to go through security together, wait together at their connection in Atlanta. She called last night afraid about the US and war and said she thought she would maybe not be as afraid if she were closer to home. That it’s the distance making her feel more afraid. And then she said, “Maybe I should go to college closer to home.” And we talked about having paper maps in case the grid goes down like it has in Iran and we looked up on google map, how long to walk home to Central NY from Chattanooga, from Tuscaloosa. A thousand miles takes about fifteen days. This was our conversation. 

Love starts over and over again, like last night at 2 a.m. changing Colby’s diaper. The complaint-alert sound - “ungh!” - she makes from sleep. The deep animal of her body saying something is uncomfortable. A big, wet diaper. Her second of the night. This labor. Love starts over and over again. I folded her covers back. Her long, hot body under the covers. I felt the pad under her, it was damp too. I unfolded the new, big white diaper. And every time I change her in bed, I think of all the nurses in all the hospitals I watched, the ones who taught me how to do this by watching their slow, strong ease:

Roll her onto her side away from you. Fold the wet diaper and pad under her as fare as you can. Lay the new, clean pad and new clean diaper in its place. Roll her toward you and pull the wet out and pull the dry the rest of the way under. Roll her back onto her back. It’s all imperfect, she’s crooked or the diaper is crooked under her and so I heave and ho to get it all lined up - this is why I must lift weights or my back and shoulder sockets will go - and then close the diaper up. All while trying to be gentle, not disrupt her always fitful sleep.

And here’s what I wanted to write about, Love starts over and over again, when I am doing all of this, I feel it and it stuns me - it must be grace, what grace is. I am overcome by love. For her, for the privilege of this care, to give this care. For love. For being needed. Love starts over and over again, every night, diaper by diaper. For 20 years.

For many years I fought this work, for many years I did not want this to by my life, for many years I saw this labor as in the way of my real life. And in those years, love was buried. No, love wasn’t buried. Grace was buried. Which maybe is to say access to the love I feel so overcome by now, it was under the ruble of anger, under the thoughts of what my life should look like and did not look like. The years I drank myself into a stupor every night. During those years, when Colby’s need woke me in the night, I remember, I felt like a dragon. Enraged, aflame with frustration. I just wanted to sleep. Love starts over and over again.

The key was to change everything. The key was to comprehend Colby was not going to fit into a previous definition or belief of what my life should or should not be. The sea has its own religion, the sea of her. I had to surrender to the sea of her and its own religion.

Miles and miles in prayer. Night upon night. Diaper by diaper. I came to bow to the work. Bow to the simplicity and dignity of her need. I continue to struggle against the world and culture’s treatment of her. But I no longer struggle against what she needs. 2 a.m. changing Colby’s wet diaper, Love starts over and over again.

My dear, kind friend, said something about how hard my care life is, and I was too tired to say, It’s not only hard. I’m not crying because it’s hard.

In the car beside her, I was thinking about how just that morning at 5am Colby had cried out, her way of saying a seizure was coming. They scare her or maybe she just wants to know a warm, capable body is near. I laid beside her and took her hand in mine. Her hands and feet get hot and clammy (the perfect word) when she is seizing or about to seize, it’s one of the first signs her body gives.

I held her hot hand and we waited. The seizure arrived. The violence, I always think of them as violent because they are vigorous, because she turns blue, because her body writhes and contorts.

Moments later, she looked over at me and blinked her sky blue eyes. I felt her relief, felt something like a Thank you, felt her infinite intelligence. My heart in my chest flooded with softness. I felt gratitude, awe, honor to be right there. Exhausted and full of joy all at once.

This was the ricochet I thought about when my friend said caring for Colby is hard. I could not summon the string of words to say, That just does not do the immensity of the experience justice. It is tiring. It is joyful. It is life. It is care. Care takes all of you, your whole heart, and you get to see, just how vast a place love can be.

My friend Sarah is listening to the Telepathy Tapes and said it made her think about Colby and how I’ve spoken of her powerful energy. Her love, her light, her grace. The plain ability to receive what she needs without shame.

Then she said, “The world needs your book now more than ever.” Which filled my heart and belly with the sunshine. The feeling of warmth from a friend who believes in you, is rooting for you. I love to receive that particular, powerful friend love, and I live to give it. Enough with competition. Enough with scarcity. These constructs aren’t going so well, let’s try this feeling Sarah gave me today - love, encouragement, and recognition.

I thought about the current climate in the U.S., anti-empathy, anti-everything life giving. And I thought, no wonder presences like Colby are, and have been, dehumanized - her life, her presence stands in complete polarity to scarcity, competition, the values of patriarchal consumption.

“The world needs your book now more than ever.” Because it is about what life in close proximity to undeniable vulnerability teaches you: none of us are “independent.” Life is interdependency. Your quality of life is a result of how much respect and gratitude is expressed in your interdependence.

Systems that rely on domination are not speaking this language. The language I’ve learned from my non-speaking daughter is the language of our non-material, infinite connection to one another.

What would happen to our world, our economy, our days if we remade villages of mutual care. If Colby was looked at for more than what she needs. If her spiritual gifts of loving presence were considered a contribution.

I’m not exactly sure what I’m saying today. Something about the invisible truths that exist outside the “Materialist” framework that defines our entire culture and much of the modern world. Like angels and telepathy. Maybe I’m just saying, listen to the Telepathy Tapes. It gave me language and validation for what we’ve known and lived with Colby. It also helped me believe we are at a time of opening to new, beautiful truths. While fear dominates the news cycle, beauty runs her deep river all around us.

Yesterday I got in the 34 degree lake. It’s what it takes to inhabit my body some days. And today it came, the tsunami of grief I’d been holding off. It hit and tears flowed. I read about National Park Service workers, and about all the other many, many workers laid off in a matter of days. As I read stories about the thousands of people in sudden and complete financial vulnerability, not to mention the vulnerability of the institutions they are fired from, I felt my heart open to this pain. 

I realized that all these people are fired from jobs that broadly could be called Care jobs: National Parks Service workers CARE for parks, researchers CARE about asking questions and pursuing solutions. 

For years and years our family and millions of others have lived the brutal financial reality of our Care Work being assigned zero value. Now this systemic, patriarchal, violence is spreading to wider and wider rings of Care. Care that was once assigned a value, until a few weeks ago, like disaster relief, fire remediation, climate research, is now deemed of no value.

I have thought for a long time about the Why of our disregard for Care Work. Today it is clear. Work that does not have a maximizable profit for the shareholders is not counted. Care Work in its infinite variations is quantifiable, we can assign a financial value to it, but it is uncountable because it is based on human EXPERIENCE. Not the human consumer. 

Today, thousands more people are experiencing the pain of their work being defined as valueless. I want to take every family in my arms. I want to say, it is so wrong to have the dignity of your work denied. The pain of that absence of dignity is real pain. The stress of the financial reality will eat you alive if you are not careful. 

Here’s what I mean by careful: You must place the source of your pain and stress at its origin. You are not the origin. Our programming in the mythology of independence will have you digging to blame yourself. You are not to blame. Your stress is a symptom, you are part of a larger dysfunctional body. No one wants to feel like a victim, but systemic violence is real. 

Care is the origin of our species, our species evolved because it could care, because of our capacity to care. That the work of human relationship and experience can be dismissed says everything about how very wrong things have gone/are going. 

Fight for all Care professions, long disregarded work and newly disregarded work. Today I turn toward the suffering and ask, how can I extend care, here and now. And that’s the thing about care, the opportunity to care is always at our fingertips.

Protect Medicaid, Caring Across

Culture Study

FUN

The White Page

I got a letter saying we no longer qualify for SNAP food benefits. Craig’s SSI at $2,000 per month disqualifies a family of four with a disabled, medically fragile dependent from help with food. And, that we owed back two months of SNAP benefits. I don’t have the money to pay back two months of SNAP. 

I fell into a state of paralysis when I got the letter. I opened it while Colby was in bed beside me, home from school, seizing. 

Then I opened the NYTimes because I’m asking myself to read the headlines each day. I set a timer for 10 minutes and then close it. That’s the routine for the past 8 days. So when I got this letter, all I could think about was us paying back $800 of money spent on food over two months, while billionaires, oligarchs pillage the country and terrorists are being pardoned. 

I reached for Colby’s hand and looked out the window at the blue sky, the light shining on the white snow, the whole earth sparkling, crystal rainbows. And my rage, my rage. She thrashes in my chest, it feels like my heart is wrestling to be free. I see my rage in my chest as a dragon. 

But I’ve trained my rage and been trained to train my rage for so long that she is not a free dragon. My rage dragon is in a cell, with a metal collar and a heavy chain attached to a stone wall, exactly like the fairy tale cellar of a stone castle where the evil king puts what he fears most.

I wrote the check to repay SNAP but I can’t find my stamps so it’s still sitting on my desk. My rage thumps around, all it’s energy trapped, impotent to change anything. 

And then I read this essay and I felt connected to how many people are in unjust situations, how many of us are freezing and unfreezing in fear over and over. And this essay makes me promise myself, and you, dear reader, I will keep doing and making.

https://www.torreyhouse.org/single-post/i-will-stay-if-you-will-stay

Pam writes, “Wishing, I thought, was over for a while. There was only time now for doing, or making, tenaciously and determinedly, the sort of doing that might shelter the most vulnerable among us, the sort of making that could protect a family. Hope, then, must lie somewhere between wishing and making. Hope is holding tight to a vision of care and compassion we might make real in the world with our hearts and our hands…

But I will make a deal with you. I will stay if you will stay. Together we can tend the Earth and our animals and each other, which ought to have been our primary job all along. This nation is dying of denial, so we will live into and out of our sadness and regret. There will be joy too, and laughter, because that is another thing that people can make together. We can surround ourselves with the words of the ones we trust most, and we can write some new words together. We can take turns keeping watch while the others are sleeping. No more looking up or out for a savior. We were born both to provide and accept this version of radical care.” 

I will take my rage and I will repay the SNAP “overpayment” because I know only billionaires and terrorists receive pardons and exceptions at this point in time in the U.S. I am not accepting this, I am protecting myself and my family from future financial violence because that’s always been the role of the powerless, to feed the power. I will write a check and I will see how this dragon can be freed from the cellar, come into the air and roar, I care, I care. That is what my dragon fights for, care.

This morning the snow swirled in below zero gusts of wind. We can’t tell, looking out the window today, that it is Winter Solstice and we make our planetary turn in the circle of a year, back toward the light. The winter season is not close to over. It’s just starting. Even as the day lengthens by seconds at a time, the cold deepens, the freeze deepens, the stark stick season rests on our eyes for months to come.

There is not enough light for the snow to sparkle. My thoughts go to grief. To my own heart in its purr of kitty grief, I keep expecting to see Miss Joni come around the corner, to hear her say, “hi” in her kitty voice. And I feel the plumb of brutal grief people close to me are in for the loss of children. The grief of the loss of partners, parents, best friends. Then the broad gravel road of grief considering beings and places suffering from war and ecological devastation.

All these tendrils of grief, it is a miracle of our hearts, that we can connect with our experience, and the experience of those near and far, if we ask ourselves to. It’s the simplest invitation.

I understand the impulse to steel against the suffering of others. Our own seems like it might drown us, so we need to avoid feeling it at all.

I have one friend in particular that I think of almost constantly, trying to locate in my body any sense of her broken heart. I want to pick up a piece of her shattered heart and carry it for her. I know we can’t do that, but I also know that I have felt, really felt another person be side by side with me in grief. And that it has helped.

What is happening then? That feeling where nothing has changed, but it is lighter somewhere deep inside? That’s what the Solstice made me think of this morning. Turns in grief are as imperceptible as the turns we make, traveling in egg shaped orbits through the galaxy.

Right now, my inner night is not so dark, not so long. I know this is a gift. From the resource of space around my experience of grief, I extend light from my heart to the grief of those I know, and to people and places I do not know. I imagine the light like a swirl of snow with a dim winter sun setting up a sheening rainbow path, connecting us, connecting our grief, connecting our relief.

The last thing you remember doing with your whole heart

I want to say this morning, giving Colby a hot bath at 7 am to warm her up so it would be easier for the phlebotomist to draw blood for blood work. 

Because that is a loving practicality, a 7 a.m. hot bath to open up the vascular system.

But I was tired and distracted and hadn’t had coffee so I only remember giving her the bath in patches. 

The last thing you remember doing with your whole heart

I do remember yesterday, saying goodbye to her in the morning. How I touch nose to nose and say, I love you Colby Rose. Have a good day, sweetheart. 

When I say goodbye to Colby. There’s a feeling of filling my heart with love, I notice it fill with love when I pause and regard this beautiful child. I fill it up like a bowl and I press it, tip all the golden pooling flow of love from the bowl of my heart into the bowl of Colby’s. Not that hers is empty, her heart, her love is a constant replenishment. But I pour mine over her as if I were wrapping her in something protective. I feel my whole heart send a cocoon, a cape, a blanket of armor made of light, and I try and believe draping her in my love before school will protect her. 

I send this halo of love around her as if it were something other people could see or maybe I’m hoping they just sense it and the sensing it is enough.

I’m trying to cover her in evidence of love so that other people know she’s loved. 

Before the nose bump goodbye and I love you Colby Rose is the I love you of waking her. First, changing her diaper, always wet. Then pulling the covers, now a duvet and quilt, a nest, back over her and I touch my palm to her forehead, brush her hair back  - I say, Good morning, Colby Rose, good morning my love. Her blue eyes blink open and she smiles, always a smile, she lifts her foot to cue me to say something about shoes - sleeping shoes, or morning shoes, or breakfast shoes, and she cracks the day to light with her first laugh, a small chuckle of laughter and light spreads through the room. 

Then the I love you of picking her outfit. 

The I love you of washing her face, brushing teeth, braiding hair.

Meanwhile Craig and the complicated, many container’d I love you of her lunch. 

He does that with his whole heart, feeds her.

The last thing you remember doing with your whole heart 

Wanting to protect her by making a shimmering halo of mom magic around this vulnerable being. This sounds lovely but I’ll tell you what’s really underneath it - armor, fight, fierceness, watching. Really the love I want other people to sense is protecting her is saying - Don’t fuck with her. Don’t fuck with this girl. She is loved by an army of 10,000. 

The real fire under the whole heart of the I love you, the I love you as a talisman, as a protection is this – There she goes, vulnerable and without language into a day of people I barely know. My love for her feels like the only way to bind her to me, to prepare her the only way I can. 

Don’t fuck with her, look how loved she is. 

Her socks match her bandana. 

She has scallions on her avocado. 

Her teeth are so straight and white. 

Don’t fuck with her because I’ll know. I love her, don’t you dare think I won’t know.

I love her with my whole heart. It’s all I have, all I can do.

The last thing you remember doing with your whole heart

Saying goodbye to Colby this morning. 

Maybe also I’m trying to say to her and only her - 

No matter what happens today. No matter if no one understands you.

If no one takes you to the bathroom on time. 

If no one can figure out how to feed you today.

No matter how lonely, bored, or frustrated, no matter how hard a day, you came from this - This moment of goodbye love. 

And you will be greeted again by this whole heart when you return. 

Today I find the holy alchemy of a burning topic + a sliver of quiet space to get it out.

Today I want to write about a new to me name for an oh-so-familiar feeling - Tribal Shaming. I heard the idea of tribal shaming a couple of weekends ago when I had the privilege of a weekend at Kripalu listening to writer and teacher Elizabeth Gilbert.

Now, that sentence alone - privilege…a weekend…Kripalu, cues up my internalized tribal shaming and the shaming my nervous system prepares for from the world.

It goes like this, in my head, “Who am I to get to go away for a weekend? Who am I to rest leisurely in the ideas of a loving thinker like Liz Gilbert? Who am I to get to drive with a friend and chat for hours about our needs and desires and dreams?” Because who I am is a person who has asked for help, financial help, physical help, help with my family. And the tribal mores of America and Capitalism say, you only and ever get to ask for help, from the government or other people, if you are well and truly desperate.

It is not just me in my head doing it to myself. We do it to each other. As a person who has used SNAP benefits, I have had cashiers tell me that conventional broccoli is cheaper than organic. The tribal shaming being, if you are desperate enough to qualify for SNAP, who are you to be particular about quality? I’ve heard implicit and explicit questioning of my taking Coral on a trip. The tribal shaming subtext being how much leisure, fun do you deserve if you have asked for and received help?

Tribal shaming is a tool to keep ourselves and each other in line, and it happens in the context of a culture. Shaming is so enormously effective because so much of it happens in the darkness of our own thoughts and fears. What we think people think of us, what we think of others.

My question is, What do we expect need to look like? Can we only give if a person is doing their part to perform their desperation in a way we understand? Do we believe we can help each other thrive, not just survive?

I think a lot about shame because I see a what a life looks like without it. Colby does not seem to operate with shame, not that I comprehend anyway. She needs help and accepts it. She does not like cheap meat, she won’t eat it. She likes well raised meat and dairy from well cared for animals. She does not feel like she doesn’t deserve that. She exists in the sensory intelligence of one smells and taste much, much better than the other.

Does she deserve that? A body who does not earn money? Does she deserve excellent food for her hard working brain? I know she deserves a life of beauty, dignity and excellent yogurt on this planet. I’d like to drop the ways I engage with tribal shaming and work to extend the same basic rights to myself, and to all beings everywhere.

Thank you for being here. Today I leave for the Martha’s Vineyard Institute of Creative Writing where I will attend as the first prize winner of the Parent-Writer Fellowship. Today I share the essay *in part, not the whole thing*, posted below, I used for my application for the Parent-Writer Fellowship.

This essay came directly from a Brave Writing class, I invite you to look at my Brave Writing classes and upcoming Summer Camps if this energy of writing is interesting to you.

I did not know that writing could come from my life, that writing and creativity broadly were a most ordinary, beautiful part of life. I did not allow myself to open up creatively because I did not think I was special enough, smart enough, talented enough, had enough (anything) to say.

How wonderfully wrong I was, because none of the conditions I believed, thank you Capitalism, were true. What is true, we are organic beings on a gorgeous planet full of reciprocity, joy, song, expression, and beauty. Thank you for reading. Consider a class if you want to write as play, write as an ordinary joy that is your birthright.

xo, Elvina

You Learn

You learn to parent in the hospital. Chapters that are not part of What to Expect When You're Expecting. Like how to change a wet pee pad, diaper and sheet. You watch the nurses roll patients to one side, tuck the absorbent pee pad under, roll to the other side, and pull the pad the rest of the way through. They did it in teams, two nurses at a time, one on each side of a bed that raised up and down, wasn’t up against a wall, making it even easier. 

You make note for your future. In What to Expect they advise parents to “Nap when your baby is napping.” Your advice is not written in a parenting book. Your advice is, “When  your child is seven then 13 then 18-years-old and still in diapers, this is how you save your back,” and you learn it from the wisdom in the bodies all around you.

In the hospital they use the syringes once per dose, these sturdy syringes with the rubber gasket on the plunger. With your prescriptions though, the syringes they give you will need to be used three times a day for thirty days, 90 presses of the plunger, 90 pulls up with the plunger as you suck the medicine from bottle to dose, these syringes have no gasket. They are hard plastic plungers in a hard plastic barrel and after a few days the plunger without the rubber gasket does not move smoothly through the barrel.

You hold the barrel flange and try to control the flow but you can’t. It jerks fast then slow no matter how you try so it becomes aggravating to get the right dose. When you lean your child back in your arms and try to ease it into her mouth, it comes out all at once and the medicine shoots to the back of her throat and she chokes. Like the medicine isn’t bad enough, now you choke her with it and at times she coughs in a way that you know some of it must have gone from stuck in her throat to up her nose. You imagine how that must sting and her eyes water and nose runs for hours. The way she cries. 

You go to the pharmacist and ask for the syringes with the rubber gasket. But the gasket is called the seal and you don’t know that and you call it a gasket for years and are surprised when nurses and pharmacists don’t know what you mean when you ask for the syringes with the gaskets. It becomes a long interaction until you think to carry one like the one you mean to show them and they give you what you want. And no one ever says, Oh, the ones with the seal. 

You go through this hundreds of times, this confusion of what kind of syringe you want because of the difference between the word gasket and seal. 

No one knows what is happening to your baby. The doctors give you no answer for why your baby seizes. The only solution they have is drugs. Drugs for a question with no answer. Friends do not know what to say as you cry and cry and cry. Seizures and your baby turning blue. Fear is a force around your body, the particles of fear materialize, heavier and heavier around you as you watch your baby, until walking it feels like you are in wet cement up to your knees. You try to obscure your fear by finding one worry at a time to drown out all other thoughts. Like, syringes. How you wish you had saved the thousands of syringes at the hospitals, used one time and thrown away. 

You do try to save them, for the art project, for the beaded curtain you want to hang, to shock people into comprehending your life. You want to place it at the threshold of your home like you could art your way into a portal of being understood in this experience you yourself cannot grasp. Maybe the curtain is for you. Maybe the art is for you, to build a temple of proof, to try and understand. Try and understand your life and your child faster so you can stop fighting, stop hoping, waiting for life to look anything like before, when you were Expecting. 

You have already witnessed with your own eyes more children who will not live than you have even read about in your whole life. The babies, their bodies bumpy with cancer. Tumors pressing the tender skin that is supposed to be all future. Babies whose parents say yes to chemo for a little more time, and babies whose parents say no and hold the baby for the weeks or months that will be their child’s whole life. You do not see a baby die from a seizure at the hospital. That is why you are here. For the drugs that make the seizures stop.

Consequence is what allows you to cohabitate with shame. Shame that if you tried harder some gentle, flower petal therapy would have stopped the seizures. Shame, still, that this is your fault from something you thought or did or even from a past life though you never quite believe in the past life part. 

Then the career did not resume. It stalled parallel to your daughter’s brain development. Her brain stopped growing and the image of the life and career you had projected, Kodachrome slide film onto screen, dissolved so fast, you could see the image disappear. No more work, travel, fundraising events, assistants. You learned this in the hospital too, that nothing would ever be the same. 

You learned you had to choose. You could be the one at the hospital all the time, or you could hire someone. You learned there are special nannies and nanny services to hire for the hospital. You learned you cannot leave your child there, alone without their own adult in the hospital. Each young child must have a designated adult, parent, nanny, private nurse, someone.

When your child still slept in the hospital cribs with high white bars, you called them “baby jail’, you watched one couple make the leaving choice while you made the staying choice. They came in together at the end of the day, between 7 and 8pm. They both wore Burberry trench coats and carried leather briefcases. You assumed they were lawyers. 

They were like a his and hers set so similar to each other. He had short light brown hair. She had dark brown hair, smooth, cut around her face and grazing her shoulders. They visited their child for thirty or forty minutes a day before rushing back down the hallway, into the elevator, back into the world that zoomed by inconsiderate of their broken heartedness. 

Did they talk with each other? Or were they as quiet outside the hospital as they were inside? You wondered about them. In awe of their ability to leave.

Their baby was also in a jail crib with tall white bars. Their baby also had EEG leads glued to their scalp. By this you expected their baby also had seizures. You watched the parents arrive, stride down the hall, their tan coats catching in the wind they made. You saw their harried and concerned expressions. You watched them and you learned, this leaving, this too is love. 

Love does not look one way. Love does not mean you drop everything and stay. Sometimes love is  keeping the careers going. Love must always be saving yourself first. It wasn’t love that kept you in your daughter’s room. It was fear that kept you there, glued to the ward, unable to exit its black hole. Fear sucked you powerfully to the spot, standing next to the baby jail crib with tall white bars. 

You could only leave when you feel yourself suffocating. When you had to. When you grew so tired or hungry that you ran like an animal out of the building and into the street. Trying to escape, trying to remember the world. 

That’s what you saw in that couple who didn’t stay at the hospital. Their world shifted on its axis, but they did not change their central physical space. Their child entered the world, their world changed in some way with that. Then their child entered the hospital building and the medical sphere and their world changed in some way again. But where they were spending the other 23 hours of their day might have remained similar to before their child, before the jail crib, the EEG. 

The thin Russian nanny they had hired for their baby and their return to work was still the nanny, she spent her days at the hospital instead. They hired a different kind of care for the night, night nurses, through a service at the hospital. 24/7, they paid someone to be there. A replacement presence where they could not be.

You knew even then that they were doing the best they knew how, like you were. You wished you could get your heart and brain to let you leave and maybe they wished they could stay. Their child arrived and their days maybe looked the same, working all day, but you knew from their bodies that their internal world was a devastated landscape. You knew they looked at other people and felt the distance between them grow and yawn. 

You knew they were on a raft of difference, their heart preoccupied with worry and that they looked at the world as if it were insulting them by not stopping to grieve. You knew they felt very apart from friends and colleagues. You knew they were shocked to suddenly be so versed and fluent in the language of suffering. You knew they woke in the morning and remembered where their child was and wondered, How did I get here? How did I get here, able to move and dress when my heart is the heaviest thing I have ever tried to lift?

You are not prepared. There is no book. From the hospital, you learned all this. 

Colby was five, almost six-years-old before we hired anyone to help us take care of her. Miss Heather still works with Colby a few precious hours a week. I think back often to a moment from the very first night she stayed to help with dinner. 

Usually, Colby sat at the head of the table so that both Craig and I could be on either side helping her eat, feeding her, wiping her chin, offering sips of water.  Coral sat beside me on my side of the table.

The first night with help, Miss Heather sat in my seat, and I sat beside Craig, across from Coral. Coral and I smiled at each other from this new vantage. She was just three-years-old. She was young enough to be openly hungry for my attention, attention she often did not get, or had to wait and wait for.

Now, I could just look at her all meal if I wanted. She seemed to physically relax as she registered my attention. 

We raised our glasses to, “Cheers!” which always made Colby smile. Delighting in the word, the festivity, the movement, I don’t know. But when she was little and let us know it delighted her, we made it a part of every dinner.

I looked at Colby from this new angle, not even two feet away, and felt a wave of joy and happiness rush through my entire body. 

Many years later, I read bell hooks, “All About Love: New Visions,” and she distinguishes care from love. Care is an aspect, possibly, of love, but they are not synonyms. Just because we are giving care does not mean we are loving. And in fact, a great need for care can mean that there is not space for love. 

When I read this distinction I remembered the moment at the table. Miss Heather had stepped into my seat, literally into the care role I usually filled. The wash of joy and happiness, I could identify now, was love. 

In that two feet of distance between Colby and my care work, love had space - like oxygen to a fire - to come into the relational moment. 

I knew at the time that I felt much more than relaxation or relief from the work of feeding Colby. Years later bell hooks helped me understand the depth and importance of that moment.

Now, I understand love itself as the endangered resource in our undervaluation of care. When families and caregivers are subsumed by care labor, it is not just sleep and resources that are lost. Love is lost. 

The time, space, and opportunity to love, that is possibly our most basic need and right.

We deserve that, all of us, on all sides of the care cycle. When we talk about care, let’s raise the bar to also consider how and where we have the space and dignity to feel and name our love for each other. 

For us to look up from the IEP report, step back from changing a diaper and actually see our child, partner, parent, there has to be another person to step into the labor of care. And for that to happen, a culture and society committed to love and care: something like a remembering, something like a revolution.

From the last session of Brave Writing https://www.elvinascott.com/brave-writing in April, we wrote to the below poem. My 7 minute, unedited, automatic writing is below the poem. 

What does this have to do with care? For three years I have taught three classes a week. It has proven a manageable amount of work within the density of my unpaid care work. Brave Writing is work that I put a lot of time into, but somehow it yields more energy. In so many jobs it is like our very lives are being extracted from, we are the resources being depleted. Offering these classes I do not feel like a resource being depleted. Class feels like the original economy of reciprocity and mutual flourishing. Like I am receiving and giving all at once. Like I’m a plant, not a machine. Which is to say, I feel alive. Like in this piece. I am so grateful for all the writers who join together in our circles. Thank you. I praise you then, now, and in advance.

“In Any Event” by  Dorianne Laux

If we are fractured

we are fracturedlike stars

bred to shine

in every direction,

through any dimension,

billions of years

since and hence.

I shall not lament

the human, not yet.

There is something

more to come, our hearts

a gold mine

not yet plumbed,

an uncharted sea.

Nothing is gone forever.

If we came from dust

and will return to dust

then we can find our way

into anything.

What we are capable of

is not yet known,

and I praise us now,

in advance.

April 11, 2024, 7 minute freewrite: 

“What we are capable of is not yet known, and I praise us now, in advance.” I want to live like that, I want to mother like that, I want to friend like that, I want to hope like that, I want to pray like that. Like, What we are capable of is not yet known, and I praise us now, in advance.

I like doing hard things, I like touching the edge of that, of What  we are capable of is not yet known. Like the cold oceans and lakes. Like water. Like Cayuga and the Pacific. 

This moring I walked into the absolutely glass calm lake. Then a short rain, then stillness. Loons let out mating calls. I walked into the water (40F) and the burn crept up my legs, belly, breast, shoulders, neck. 

The aversion is gone. Everything about it feels a specific kind of good. 

I walked into the water and thought, this pain, this burn, this pinkening sensation, this is helping me. Has been helping me. Helped this winter in ways it will take time to understand.

But it’s not that important to understand. 

What is important is to return. 

Return to the sources when you find them, when you know, recognize, learn what helps. What helps you want to be here. What helps you remember,  you are here, in a body, on a planet, alive. What helps you feel what you are capable of. And praise, praise your life now, in advance.

One minute of seizures still feels like an eternity. An eternity to wonder if her body can survive. When she breathes again, the relief overwhelms me. She did not go to school. She could not walk so I carried her back into bed. I felt an ephemeral, warm bubble of gratitude. She is here. She is still here.

I laid beside her, head on the same pillow. Her dense, postictal sleep, I strained to keep track of her shallow breathing. Then it arrived, the drape of grief. I feel it on my head, over my skull, as if I had a mantilla made not of cotton or silk but of sorrow.

This weekend I went to my reunion at Smith College. While there I remembered reunions when Colby was little enough for me to bring everywhere. I remembered being on campus when she was small and seizing almost every day. I remembered how thoroughly in shock, terrified, I was then. I had no idea what this new life with a medically fragile, disabled child would look like.

I remember feeling ashamed and self conscious that I was not working. Sure that another more capable Smithie would be managing to care for a child and be a star in her career. I remember practicing an elevator pitch about what I was doing with my life since I did not have the shorthand of a career, a title, a company.

I remembered how hard I tried to present as other than I was. Tried to present a capable, confident, successful image. Tried to present the person I wanted to be, the person I thought other people would want to be around.

This weekend I traveled with Coral and Colby stayed home with Craig. I noticed anew how I struggle to provide a catch-up/chat/cocktail party answer to “What do you do?” And I wondered as I looked around the rooms full of alumnae, who else struggled to answer? Does anyone feel like they can adequately answer that? Do most people? I don’t know, I didn’t ask. I did try to answer in new ways, spontaneous to the moment. I tried NOT to use an elevator pitch.

Today, right now, that question, What do you do, rattles around like an echo from the reunion weekend. I check a diaper. I put a lunchbox in the fridge. I notice how the grief sadness feels lace like and how that is a change from when it used to feel like a vice. I focus on softening my thoughts because a certain kind of rumination will trigger migraines. Today this is what I do. Take care of this one delicate, inconceivably strong life. Try to tell the truth, and then do it again.

I was on the beach in California a couple of weeks ago. It was the only 70 degree day we’d get in the spring break week, so at low tide I took Coral to my favorite beach, 36th Avenue in Pleasure Point. The sea sparkled. She smiled. We ate chips. My phone rang, I ignored. Then again, and again. A person who works within Colby’s sphere of Medicaid budget had called five times. I picked up.

I had a feeling not to answer. Not to interrupt this golden, precious moment with Coral. But fear about something being wrong that needed my attention won out and I answered. How I wish I had not.

The person on the phone told me that because *they* got half a year of receipts for Colby’s budget submitted too late, the expenses would come out of Colby’s budget for the next year. To share the visceral, full bodied flame of frustration and rage I felt in that moment, you’d need to know about OPWDD/Medicaid, and the new way of supporting disabled people called “Self Direction”.

If you don’t already know about “Self Direction” and OPWDD/Medicaid, I can promise you it will make your brain short circuit. It is new yet archaic, and infantilizing.

The extremely short story, “Self Direction” is a budget set by Medicaid, administered by OPWDD (Office for People With Developmental Disabilities), to support an individual with expenses related to their disability/being disabled. It is not a budget you are given to use as you see fit. No, it is a *reimbursement program* that reimburses you for expenses THEY think you should/can get reimbursed for.

I could write volumes on what they deem an expense and what is not. I could write volumes on the structural inequity in accessing the budget since you have to have the money to put up in advance.

Now, I learn, on the beach with Coral, if a person who is *hired and paid out of Colby’s budget* to submit the receipts gets them in late, it comes out of Colby’s budget for the next year.

Rage flames and licks my insides still, nearly three weeks later. It is so obviously unfair. And I am so impotent to make change when it means taking on Medicaid. I mean, Medicaid? With third party agencies and contract agencies, where do you begin, who do you talk to, at Medicaid?

But what I want to write about here and now is how for the rest of our trip to CA, seeing friends I hadn’t seen for years, when anyone asked, “How’s Colby?”, THIS structural bullshit filled my mind. And I didn’t want that to be my response about how Colby is doing, because it is not how Colby is doing.

I had to separate my attention on Colby over and over from my knowledge of our violent and parasitic systems, knowledge that threatens to overtake my sense of her.

I did not want to bring my rage to the question of how Colby is doing. I did not want rage at this broken system to be what I talked about with my friends, with Coral at the table, on vacation.

This did not feel like denial. I could not possibly deny what I was feeling. It felt like discernment. It was not elegant discernment, inside I roiled and I was distracted.

I answered how Colby was doing. Colby is doing great. She loves school. She feels safety and belonging in her life. Her body does not seem to be in too much pain at this moment. She laughs and laughs, holds deep eye contact, eats well.

And I turned the attention to Coral, over and over. Her moment to come first. Her moment to have the table of loving extended family focus on her. She saw Mavericks. She ate acai bowls. We watched the sunrise and sunset over the ocean every day for a week. We had a wonderful time. Even with everything on my mind, even so.

That’s what I learn over and over from Colby. Delight in what is in front of you. Delight in who is beside you. There is work to be done and there is also this beautiful life to enjoy and savor. And there is rage to focus into a torch that is a tool.