I feel like a lot of my articles are downers with a high note ending. Like an opera. Except at least you all know what’s going on in my articles. Then again, maybe you know what’s going on in an opera too. And, if so, good for you! I do not.

Since the fog has lifted (You can read more about that here.) I’ve still struggled with where I’m going and what I’m doing. And how my husband and I can keep our house while also paying our bills.

Breathing is expensive right now. And our family is one wrong decision away from being homeless.

It’s been a really long time since we’ve been this broke. And if another person tells me, “Well, you’re rich in love and family.” or “You’re wealthy in so many other ways.” one more time, I’m pretty sure whatever charming disposition I might have will no longer exist.

The good news is, I found something that lights me up. It has given me butterflies on multiple occasions over the past six weeks. And that’s been just enough to lift my mood, reignite my mind and soul, and keep my depression symptoms at bay.

I started a new business. From scratch. With zero dollars to invest. And I want to tell the entire world about it. Not because of what it currently is but because of how I know it can and will make people’s lives better.

(Especially once I get funding to grow my little seedling biz into something even bigger and better.)

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Let me introduce you to Seenly.

I’m equal parts excited and kind of wanna throw up in my mouth a little telling you about it. Apparently launching a business that shows the world some vulnerable pieces of your heart does that.

But you all have seen my heart and and trauma already and you’re still here! So this can’t be that bad, right? Right.

Anyway, I made Seenly because I know how much it can matter when someone thinks of you and actually tells you. Or when they notice that you haven’t been around. Especially when you’ve been feeling a little forgettable. And especially, ESPECIALLY, when you feel completely unseen, invisible.

And I think that’s happening a lot right now for a lot of people.

Seenly is a website that helps you write a meaningful note. It helps you say things you might not know how to say to people. There are prompts for the hard weeks, the little wins, and the weird nonsense you can only send to certain people. You write it in your own words.

Write and share it yourself for free, or choose ‘Send it for me’ for $2.99. We email the note to your person, and $1.50 goes to National Alliance on Mental Illness.

I’d love for you to take a look, hear your feedback, get a like and a follow on my socials. And if someone comes to mind while you’re there, tell them. I spent a lot of time building a beautiful email note for all Seenly recipients!

This is sort of in beta testing, so I want to hear all the things good or bad if you try it out. And yes, I’d love to have a texting option too, but that’s a crazy expensive integration not for baby Seenly or broke Liz.

Eventually, the Seenly store will also offer some lit merch that helps people feel more seen and starts conversations that may be desperately needed. So stay tuned!

Now. Promo over. I want to get to the just-as-important part of this whole thing. If Seenly tanks, that will suck. I’ll be incredibly disappointed. I’ll definitely cry about it.

But that doesn’t take away the butterflies.

It doesn’t take away the pride I feel in myself for creating something beautiful.

And it doesn’t take away all that I learned in the process.

The excitement I had (and still have) when working on this business is something I haven’t felt in…well, I don’t even know. Forever I think. I might have even felt some joy.

Building it made me feel alive. It made me feel like there’s something else to stay alive for other than my kids.

Nothing can take that away. If it fails, it fails. Then I figure out why and fix it.

Or I start over with a new beautiful idea. I know they’re there now.

I want you to know if you’re in the fog, the throes of depression, anxiety, poverty, illness, grief, exhaustion, and/or you feel like nothing can ever make you feel alive ever again, your feelings are 100% valid.

Sometimes, though, when we’re in that place, we forget that other feelings are valid too. Hell, we forget that other feelings even exist. Because in our world, in those moments, time doesn’t feel like a moment, a season. It feels like millennium.

But the other side exists. Whether you see it or not. And that is my point today. We all need reminding sometimes that those other feelings exist, that there’s a life outside of our fog.

I’m not saying everything will be rainbows and sunshine. But, at the very least, you might stumble upon butterflies.

And that’s worth hanging around for.

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For those of you who are new, I’m so grateful you’re here and you’ve chosen to support Hello, I’m Human! To learn more about me, my story, and why I’m wanting to build a community here, please check out “On Surviving Everything,” where I use my life experiences to connect with so many of you. Something I do love about my trauma, my life of adversity, is that it has allowed me to understand deeply the plight of others in so many life circumstances.

This is a safe place to say all the things. The things you say in your head. The things that you think you should be ashamed of even thinking. The things you fear. All the “undiplomatic” things.

Say it. Get it out. I’m here for it with no judgement and all humanness.

Because that’s what we all are. And that’s what we all deserve.

I don’t remember when I started thinking clearly again. But it was only a couple of weeks ago, after a long period of depression and not being able to see beyond my nose. This time was pretty rough.

If you’ve never experienced the depression “fog,” you’re really missing out. (Enter sarcasm)

During the many “lasts” that I was experiencing with my youngest, soon-to-be high school graduate, I was also battling the economy for a job that I still don’t have. I was and am still caregiver to my husband and oldest daughter. And the one person that made all of that better was moving 8 hours away. And, of course, the menopausal emotional roller coaster that sometimes makes me want to commit myself to a dark padded room, was, and still is, almost uncontrollable. We’re talking the coaster wasn’t even on the tracks anymore. Final Destination style.

I’ve never fancied myself one to have friends. I used to pine for just one good one. Now I’m at peace with it. My husband is my best friend now. Though even he is a nuisance sometimes when it comes to my depression. Doing things alone is easier most times. Less disappointment. Less misunderstanding. I don’t have to worry about platitudes during hard times or inconveniencing people who maybe don’t mind it, but I would.

So I sat in the fog alone. For months.

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Imagine driving through fog day and night for months on end. The kind of fog where you can barely see past the hood of the car to the road. It’s thick and suffocating. Annoying. Frustrating. Difficult.

When do you turn? Does anyone see you signal? Can they see your headlights? Where are the lines on the road?

Now imagine that your car can only go like 10 mph through the fog. Maybe that feels safe in the moment, but it’s really hard to get anywhere with any urgency at that speed and with that kind of visual impairment.

The mental fog that comes with depression is heavy. Sludgy. Like dragging a 2 ton car around with you and not knowing where you’re going…or how you’re gonna get there. And the “there” is life.

The “there” is getting up out of bed. It’s showering or just washing your face. The “there” is getting dressed, working, eating, feeding your dog. There are many “theres” in each day, and some of them just don’t make the cut. Because the fog is so thick and heavy. And you’re so bone-tired. And you just can’t.

Sometimes I don’t even remember what I did during the fog. There are moments I remember. But I don’t remember a lot of it.

I don’t currently have a therapist. The one I was seeing disappointed me, and there are so many higher priorities for our money right now. And I’m tired of trying to find the right fit. She’s the fourth I’ve had over the years, and I don’t feel like I’ve met but one who “gets me.” And he left the practice and moved away some six odd years ago.

Given all of that, I don’t know how I came out of the fog, but it was similar to how you would in a car as well.

I drove out. It just disappeared. One day a couple of weeks ago I woke up clear-headed.

Maybe I’d finally slept enough. Maybe I’d finally had enough alone time. I don’t know, but it went away.

Good thing, too. Because little did I know a couple of weeks ago that yes, it is indeed possible for even more shit to hit the fan. (If you haven’t read my article, “Since She Left,” it provides some context.)

But that’s a story for later.

For now, I want you to know that if you’re in that fog. And the struggle is well beyond real. I see you. I’m here to help you feel less alone. I can’t solve all your problems, but we can give it a go together if you want. Or I can just listen with an empathetic ear.

I know how hard it is to stay sometimes. Know that I’m happy you’re still sticking around.

So please stay.

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For those of you who are new, I’m so grateful you’re here and you’ve chosen to support Hello, I’m Human! To learn more about me, my story, and why I’m wanting to build a community here, please check out “On Surviving Everything,” where I use my life experiences to connect with so many of you. Something I do love about my trauma, my life of adversity, is that it has allowed me to understand deeply the plight of others in so many life circumstances.

This is a safe place to say all the things. The things you say in your head. The things that you think you should be ashamed of even thinking. The things you fear. All the “undiplomatic” things.

Say it. Get it out. I’m here for it with no judgement and all humanness.

Because that’s what we all are. And that’s what we all deserve.

Most importantly, you are not alone. I see you.

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Here’s everything that’s broken since my daughter left for college two and a half weeks ago. Besides my heart.

The hot water heater. Two days after we got home from dropping her off. Her in Pennsylvania. Us in North Carolina, standing in a cold shower, laugh crying because was I gonna do? Three thousand dollars later, we have hot water. But the tears are still coming.

The dog’s knee. A tear, the vet says, in a dog who does not understand the word rest. Try keeping a reactive, muscle-bound bully calm and still for a month. I dare you. It’s hell for everyone involved, him included, and he might still need surgery to fix what his own body did to itself out of pure, unrelenting joy.

The siding. My husband and I forgot — actually forgot — that we’d scheduled new siding to be put on our house until the company gave us a reminder call the night before. So now we’re a week and a half into ten hours a day of banging. So. Much. Banging. Weekends included. Our dog barking back at every hammer strike like he’s defending the house from an invasion, sometimes calmed by being crated in the dark of our bedroom, sometimes calmed by me holding him like a 62 lb, angry toddler. Mostly, though, he’s just been a royal pain in the ass.

Then Covid took my sense of smell and taste for good measure, because apparently this year, these past few months, haven’t been enough. Which means I haven’t even been able eat my feelings about any of this stupid nonsense of a life. Not about the empty room down the hall. Not about the house falling apart. Not about the money, or, rather, lack of it. There’s something almost funny about that. Almost. Grief with nowhere to go because you can’t even taste the ice cream.

Work is still happening. Somehow. I keep showing up, keep getting things done, while sitting on a 1.5% raise that felt less like a reward and more like a joke someone forgot to finish telling me. I wish they just hadn’t given me anything at all.

We’re drowning in debt because we literally just can’t afford to live.

We’re the poster children for middle class paycheck-to-paycheck living.

The kind where you make just enough to disqualify you from help and not nearly enough to actually live. I’ve been hunting for a second full-time job for eight months now. Four interviews. One that went all the way to the final round. And then, nothing. Just the particular exhaustion of getting close to relief and watching it not happen is insane.

I’ve thought about cleaning houses again, like I used to, except now everyone in a fifty-mile radius is also trying to make an extra buck, so even that door is crowded. I’ve thought about selling my plasma. I’ve thought about this more seriously than I’d like to admit. And about what a kidney might be worth these days. Mine are healthy. Both of them. I have two, and lately it feels like an oversight that I do.

My husband has been on workman’s comp for over a year. Concussion symptoms. Anxiety. Physical limits from the accident, all of it tangled up with chemo medication and ADHD that he refuses to get treated. His memory isn’t what it was. I’m the one who holds the rest of it. Especially the version of him that existed before.

I love him. I do. And I am not going anywhere.

But God, a break would be nice.

My oldest has regressed since coming home from the residential program that cost my parents roughly the equivalent of two years of private college tuition. So that’s where I am right now. Parenting a brain cancer survivor who is also an AuDHD young adult who can’t drive. While her little sister gets to be four states away, blissfully unaware, actually thriving. I’m so relieved she’s thriving. I really am. She’s living her very best life and that’s all I’ve ever wanted for her.

But some nights I miss her so much I could throw up. And I think it’s because she made my shitshow of a life so much better. She made it feel normal. Happy. Laughter followed her around with ease. Which are all selfish reasons to miss her, I know.

I cried when my husband even suggested we throw away her snacks in the pantry. The open ones she left that will surely be stale by the time she comes to visit in November. I cried when he said he was going to clean her car because I said her smell would be gone then. I cried when he emptied the trash in her otherwise very tidy bedroom.

So yeah. It’s been a little ridiculous indeed.

We are so broke that my parents send me money every month. Me. Their forty-five-year-old only child. Money that covers what my income and my husband’s workman’s comp check can’t. It feels like complete shit to need that. To be a grown woman handing her aging parents the bill for her own life. But they’ve told me plainly that three more months is what they’ve got left to give. I’m not angry about it. They’ve always given of their love, time, and money freely and asked nothing in return.

But they always tell me when they can’t keep doing something as well. And I wouldn’t want it any other way.

So, yeah. Three months to find another job. A weekend job. A part-time job. Several part-time jobs. Something. Anything with a paycheck attached to it. Something I’ve been doing for the past 8 months already. I’ve applied for hundreds of jobs in those 8 months.

My depression has been winning for three or four months now. I tried a new therapist recently. I had real hope for her, right up until she asked me how I felt about the phrase everything happens for a reason. I dropped her that day. I don’t think I’ve mourned the loss of that hope properly yet.

Mostly I just feel numb. I should be crying. I know I should be crying. I just don’t have anything left in me to do it with.

Throw in menopause for good measure, because why not, and you’ve got a fairly accurate picture of the last three weeks of my life.

The thing is, I’ve lived the fuck my life season before. I know exactly what it looks like and I know that it ends. Nothing lasts forever. Not even this.

But I am so tired of being handed lemons.

Someone, please, just hand me the lemonade already made. Premade. Powdered, even. I genuinely don’t care. I just need it to require less of me than squeezing hope out of something that’s currently trying to break every part of my life at once.

Or honestly, since sugar’s a luxury item around here right now — I’ll take the lemon water. I’ll take it warm. I’ll take it without a straw.

I’ll just take it. As long as it means my life gets just a bit easier.

To all of you who made it this far, thank you. I needed to get this out. Even if no one read it, I’d still need to get it out. But you did, and I am so beyond grateful for you taking the time to see me in all my messiness.

If you, or someone you know, is struggling — it doesn’t matter how or in what way — my writing is intended to make people feel seen. Feel not so alone. To know that whatever they’re going through has been gone through by someone else before. There is no feeling on earth that has not been felt before.

This doesn’t take away the struggle. That’s not the purpose. The purpose is to have a safe place to share it.

Everyone’s struggles are welcome here.

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I have never been a violent person. Except, apparently, I can be. I guess everyone technically can be.

He usually looked like a normal dad. A normal husband. But that was never the case.

I remember when I hit him. I remember it not being as forceful as I wanted it to be to slap that god-awful smirk off his face. The one that makes him look confident, cock…

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I think I might have more faith in my mom’s faith than anything else in this world.

When she says “You’ll be alright.” I believe her without a doubt. No questions.

Sometimes, that’s all I need to hear. On days when I am full of overwhelm, self-doubt, struggles, anger, frustration. On days when I feel like a failure, like nothing is ever going to work out.

I’m not religious at all. I have no particular belief system. But my mom? She’s undoubtedly the truest form of Christian I’ve ever met. In her 72 year old body, she houses a millennia of tolerance, no judgement in her bones. And lifetimes of love. All are welcome in her home.

It is safe there. Familiar. Cozy. And it smells the same as it has for the past 44 years…like home.

So I go. I go when I need to cry or vent. When I’m broke or broken. I go there when I need my mind to be still. When I’m lost.

Or when I need to know I’ll be alright.

Her faith is unwavering, though I don’t think it always has been.

She doesn’t say it with toxic positivity. There’s no syrupy sweetness in her voice. No lack of acknowledgement of my pain or suffering on any given day. There’s no big smile or pep in her step.

It’s not forced or fake.

When she says I’ll be alright, it’s with the utmost faith in a higher power than I have ever seen. It’s calm. Her eyes are serene, more ocean than emerald these days. Faded, but still the same. Her voice is steady and confident.

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Today was one of those days.

I just couldn’t take anymore. I needed to let go of all the feelings, all the thoughts Formula 1 racing through my tired, migraine-riddled head.

So, I drove the 20 or so miles to her house, my childhood home, fueled by anger, resentment, and tears.

By the time I got there, I’d calmed down and my steering wheel was probably grateful for a break from the beating I gave it.

I asked her why so many people seem to just skate through life, unfussed, untouched by adversity while others get more than their share. She said she didn’t know but that her adversity made her who she is, and she’s pretty happy with herself.

She’s wonderful, though. Almost perfect in every way. Beloved by generations of students she taught. She taught them about life, how to be better than they were the day before, how to not make excuses, how to love…how to live. And in between those things she taught them math, science, reading, and social studies.

For forty years.

She’s been a church member of some sort for the same amount of decades. Serving in all manner of ways.

I told her my adversity isn’t making me like her. Like I always wanted to be. That it wasn’t a fair correlation to say that my adversity was making me a better human.

I told her I’m tired of struggling. I’m tired of chaos and strife. I’m tired of parenting, or, rather, I’m tired of the hurt that comes along with parenting. That it’s so fucking hard. I’m tired of cancer and illnesses and caregiving and things breaking in my house. I’m tired of all the ugliness in the world. The senseless death, pain, and suffering of so many people everywhere. I’m tired of being poor and relying on them for help. An almost 46-year-old child. I’m just tired.

She told me that one day, I’d see the puzzle pieces of my life and how they fit together. That right now, I’m too close to the board.

She said I need to remember that, despite the adversity, things somehow have always worked out. Just not the way I want it to. And that’s ok. That right now is no different. That sometimes we don’t see how perfectly timed things have been until we’re older and see the puzzle put together. How all the adversity is just puzzle pieces we’re trying to put in the right place and our puzzle wouldn’t be complete without those pieces.

She said that even if things have worked out over and over and over and over again, we still have fear that it won’t the next time.

Because we’re human.

But she knows, with all the faith in the universe, that I’ll be alright. That things will work out. That she can’t make the challenges of life go away but that she can be here with me through them.

And that’s exactly all I needed to hear.

Somehow, my mom not having all the answers is the only answer I need. Her faith does the rest.

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If you feel like you’re in a place in life where you’re not ok. You’re tired too. Lost, overwhelmed, angry, sad, frustrated, resentful, and you don’t have a place to turn, someone to talk to, or someone to listen, I’m here.

I’m not here to dole out toxic positivity or rainbows and sunshine. I’m not going to try and fix all your problems or any problems at all. And I’m certainly not going to tell you you’re strong.

But I hope I can at least make you feel like my mom makes me feel. Safe. Comforted. And, maybe, like you’ll be alright.

xx

Liz

If you’ve read any of my Letters From Hell chapters, you’ll know that I’ve had what is likely an unhealthy obsession about lasts.

The last time my kids held my hand or called me “mama.” The last time I washed their hair or helped them with homework, helped them tie their shoes or try on dresses that fit going on but not coming off. The last Barbie I ever bought or princess dress. The last time they played with kid toys. The last time they thought I was the coolest mom ever.

The last time they called me their best friend. The last time they truly wanted me around.

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I thought this summer would be different than it turned out to be. I envisioned it for years, like a little girl imagining her ever so meticulously and perfectly planned and executed wedding.

We’d go on a family vacation to the beach we’ve always gone to. We’d play late-night games and mini golf and eat at all our favorite restaurants there. We’d go to Beaufort and walk the boardwalk. Maybe take the ferry to Shakleford to see the ponies like we’ve almost always done. I’d bury her in sand and shape it like a mermaid, and then we’d swim into the deep ocean to get all the grit out without exposing our whole bodies to the rest of the beach goers.

We’d dig for sand fleas and collect seashells like we did when she was little. Like we did just last summer.

We’d sit and watch the sunset quietly. Maybe she’d tell me all that was going on in that beautiful mind of hers. All the stuff she keeps hidden away.

Like she used to.

And later that summer, she and I would go on a weekend trip just the two of us. She’d laugh fart and then laugh some more on the car ride to wherever we both decided to go.

She’d do that silly run she still does when she decides to stop caring what other people think of her in public and just be herself.

Maybe we’d have some lunch or coffee dates here in town. Or late night Waffle House runs like we used to. When she and I would “sneak” out of the house at midnight or 1 a.m. Just the two of us. We’d come back and I’d lay with her until she fell asleep.

The truth is, I lost my youngest daughter four years ago to a boy named Ben.

While he hasn’t always been perfect, he’s learned from his mistakes and has shown my girl what real love should look like from a partner. And for that I am so beyond grateful.

I love him and I resent him. I often want to hug him and punch him in the same breath. I want to scream at him. He took her away from me long before I was ready. Not that I would’ve ever been ready. It’s not his fault. It’s not hers either.

It just is.

He’s her best friend now. And has been for years now. He’s the one she runs to. He’s the one she confides in. He’s the one she travels with and experiences the world with. They’ve grown up together over these last four years, and I don’t know if I’ve ever seen a married couple with a relationship healthier than theirs.

He gets the last summer.

Her friends get the last summer.

Everyone but me, but us. Her family.

I’ve missed her every day for years now, so that’s nothing new. It’s a very strange feeling to miss someone you see most every day. Who lives with you.

But it’s especially hard to miss her when she’s been more than she should’ve been as your daughter since before she was even born. A caregiver to me and her older sister. A salvation from almost certain suicide. A healing salve to the heart of her mom who simply couldn’t seem to recover from the loss of the brother born and lost before her conception.

She’s been the brunt of her biological father’s neglect. She’s been inadvertently punished for decisions I made, decisions I couldn’t protect her from.

She breathed life back into my life on a thousand different days in a thousand different ways.

Her laugh echoes less physically through our home and more spiritually, like an energy that’s always there long after she’s left. It’s contagious and loud and full of life. And we hang on to her sweet scent as it lingers in the air after she passes through on her way to her next wherever.

Sometimes I’ll go into her room and smell her things, her clothes, her pillow. While she’s out on her latest adventure.

And I can’t seem to stop my selfish heart from hurting…

But I can be happy and hurting and excited and missing all at the same time.

Because she deserves to live. And to do that with whomever she wishes. She deserves to finally be free. And I’ll still be here if or when she needs me. There is nothing she could ever do that would change that.

The last summer before college has been ripe with lack. Our money has other priorities that do not include a vacation. It does not include a weekend mother/daughter trip or late night Waffle House runs.

It has looked nothing like I imagined.

The thing about lasts, though, is that there’s always firsts.

Once the heartbreak eases and the tears stop flowing, there’s room to plan for those firsts. To anticipate them. To enjoy them.

Like her first text after she’s all settled into her dorm room and we’re back home. The first time she comes home from college for fall break. The first college performance I get to see her dance in. The first family weekend.

I don’t know if letting her go will ever get easier for me. But I do know that it doesn’t matter.

What matters is that there are still so, so many firsts.

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For those of you who are new, I’m so grateful you’re here and you’ve chosen to support Hello, I’m Human! To learn more about me, my story, and why I’m wanting to build a community here, please check out “On Surviving Everything,” where I use my life experiences to connect with so many of you. Something I do love about my trauma, my life of adversity, is that it has allowed me to understand deeply the plight of others in so many life circumstances.

This is a safe place to say all the things. The things you say in your head. The things that you think you should be ashamed of even thinking. The things you fear. All the “undiplomatic” things.

Say it. Get it out. I’m here for it with no judgement and all humanness.

Because that’s what we all are. And that’s what we all deserve.

-Liz

“It’s been a long December, and there’s reason to believe…maybe this year will be better than the last.” - Counting Crows, ‘A Long December’

I can’t remember a December as an adult when I didn’t play that song. As a woman who endured extreme poverty, a decade with an abusive alcoholic, mentally unstable husband, and the death of a child, I think back on it now, and I can say that song has never had more meaning than it did in December 2018.

No matter what challenges have come our way since or before, nothing has made me wish for a better year like our eternal year of cancer.

After the epic disaster that December was, I suppose Big Love’s last round of chemo might’ve been considered easy, boring even.

There were no major incidents except that she couldn’t go home for almost the entire month of January. The fevers and bacterial infections that were attributed to her intestinal walls leaking because of the harsh chemo medications had been the norm so far. More platelets. More blood transfusions.

The hospital, once feeling like a prison and then a respite, started to feel like a prison again.

When it’s over, there’s supposed to be this big celebration. They throw confetti and you ring a bell. We planned on having a party and everything when she finished that last round. I thought we’d be excited like everyone expects us to be.

But we weren’t. We were skeptical. I tried everything in my power to be excited nonetheless. To continue the show. It didn’t work. Her reasons for being skeptical were different than mine and the same.

Thank you for reading and supporting Hello, I’m Human! If you’d like to hear more from me, I hope you’ll subscribe.

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January 7, 2018

Dear Warrior Princess,

I see you still…now and again. That little girl I used to know all those eternities ago. The one that whispered secrets to the ocean and let the salty breeze dance with her soul. I remember her. She comes out now in brief moments of forgetfulness and in your sleep. I see her in your belly laughs, on the very rare occasion that happens.

But the truth is, you’re not her anymore. And you never will be again. I mourn that loss every single day of my life. I don’t know if I’ll ever stop, actually. I’m not sure mourning, whether from the loss of a life or the loss of other things, is something that just goes away ever. It’s just something you, maybe, learn to live with better and better as days pass.

That hole that is burrowed into your core. It’s unfillable and filled. Empty and full. What’s been lost and the memories of what was there coexist somehow, pulling and tugging against each other constantly.

You’ve joined me in the waiting now. For that, I am thankful and sad. You’re finding your balance of hopeful and not. It’s a very grown-up balance to have. Something many adults don’t actually possess.

I would give my very last heartbeat, my last breath, for you to be the girl you were before, even though there’s so much I love about the girl you are now. So much amazing stuff to love. But it’s not the way it should’ve been. So I’d still trade.

Not so long from now, we’ll be leaving your “last” chemo treatment with uncertainties. Just like every other cancer family. There’s always uncertainty. We know that your last chemo treatment most assuredly will not be your last inpatient stay with our friends on 5100.

After that, we’ll wait for scans to tell us what to celebrate. After those scans, you’ll either be on your way to recovery or on your way back to hell. We’ll either be rebuilding or reliving. One is easier for you than the other.

For me, though, both are hard, almost equally so. Our story doesn’t end when treatment ends. It’s just beginning, in fact. But I’d like to hope I’ll be able to breathe again soon. Maybe the water will become shallower, and the surface won’t seem so far away.

Maybe we can live instead of survive. I don’t know if I even know what that is anymore. I’ve read recently that grief and love are the same. I can attest that this is true. Maybe living and surviving are as well. Maybe you can teach me how.

Love you forever,

Mom

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(Note: “Baby Love” is what I used to call Avery’s little sister.)

January 21, 2019

Dear Baby Love,

You say it’s hard when I’m not there. I don’t know what “it” is. Life, I reckon. You threw your shoes against the wall, all your clothes all over the room, and sat down and sobbed. A very rare occurrence, your tears. You said you were having a “cry” day. I held you in my lap and rocked you until you were done.

You said you don’t wanna grow up, that you want to be a little girl forever. I feel like maybe I failed you. Maybe I did, in fact, baby you too much. Maybe I have been there for you too much. Is that even possible?

Maybe I didn’t let you grow up enough before cancer, as if I could’ve even prepared you for such a thing. Truth is, if I did, and you are the cliché baby of the family, I’m not sorry. Life probably would’ve been slightly easier on you this past year if I hadn’t looked every time you said “Mama, watch this!” or not allowed you to ask me whatever question at whatever time of day, wherever I was, for all of your 10 short years of life, 11 now. Maybe if I left you to your own devices more and coddled you less, it might be less difficult for you if you…if you weren’t so….attached. But I wouldn’t take it back. I wouldn’t change a thing. And I’m not apologizing to anyone for it. Ever.

You’re not just any baby. You’re my rainbow baby. You’re special in a different way from your sister. You saved me. You tell me I’m the bestest, most amazing mom in the world. I told you I’m your only mom, and you’re biased. You said that if you had two moms, I’d still be the best. And I think, if I had to have a rainbow baby at all, I couldn’t have begged God himself for anything better than the one I have.

I know this is hard. You’ve been uprooted and bounced around from house to house to house to hospital, back and forth from one person to another, from one state to another, even. Nothing in your life has been even remotely consistent or stable, especially not me.

You’ve seen and heard and experienced things that no child should ever have to. And you’ve handled it all with such grace and poise and strength and laughter. I’m so, so proud of you. You more often than not live out of one of your many little drawstring bags, which you stuff full of random items of clothes, mascara, a hairbrush, and some hair ties, and that’s it. You’re ready to go at a moment’s notice.

I know you miss your life before cancer. I know you miss Big Love. And me. And I’d love to tell you that our life will go back to normal again soon. But it won’t. It’ll never be the way it was before. But the missing will get better. Easier. It will.

You’ll still miss your life before cancer. Our lives. And I’ll miss you before cancer. But that’s ok. I miss you when you were a baby and when you were five…and when you were ten, and most all the ages in between. I’m used to the missing.

But one day, forever and soon from now, you won’t remember your life so much before Big Love got sick. In pictures you’ll remember. But in your heart, it won’t hurt so much. It’ll be fuzzy and blurry.

I will remember, though. I’ll remember that little girl who never cried because there was no need, whose heart was never broken or sad. The one who laughed at fear like y’all were best friends. The girl who held hands with the wind and the sun. The one who played dress up and wore crowns and who jumped in the ocean in her best and favorite sparkly pink dress, laughing at the waves. The one who never had nor needed “cry” days. I’ll remember her forever.

I’m sorry you’ve had to grow up in an unnatural sort of way, sort of time. I’m sorry you’re hurting and sad. And I’m sorry I can’t fix it. But I’m not sorry that you’re my baby, the last child I will ever bear. I’m certainly not sorry that you’re my rainbow baby, and I’m not sorry that you always will be. Because no matter how I have or have not raised you, no matter who you become or grow into or out of, you are and always will be my “little” girl. And I’m perfectly ok with that.

Love you more,

Mama

A LIFE SENTENCE

“It’s been a long day without you, my friend. And I’ll tell you all about it when I see you again.”

Wiz Kalifa, ‘See You Again’

I read once that cancer isn’t a death sentence. It’s a life sentence. And this, this I find to be very, very true.

At the beginning of our life sentence, I told Big Love I’d carry her over the finish line if I had to. And I still will. It would just be nice if we could see one.

****

I thought I’d be relieved. I thought there would be some sort of finality with hearing that there’s no tumor, that treatment is over, and recovery begins. I don’t know. Maybe I thought I’d let out this big breath I’ve been holding for so long, and all the horribleness of the past year would just come flowing out. And I’d feel cleansed or something.

I don’t know what I thought, what I expected. But whatever it was, none of it happened.

I was heartbroken that she didn’t want to celebrate. I thought we’d have a big party signifying the end of treatment. Something to at least acknowledge what an amazing feat she survived. Like many others do. But she said no. I thought she’d ring the bell. And somehow, I thought if she did, it would feel more complete.

Instead, it’s so... open-ended, like a sentence no one ever finished, and you’re constantly wondering what the person was going to say. I was left feeling lost and directionless. It sounds ridiculous, really.

But that’s what it was like for us. Her and me. Not relief. Not a celebration. It felt like just another day with cancer. It felt like guilt for not feeling happier. And it’s felt like all of that ever since.

There was this world that everyone had been living in. One we hadn’t been a part of in a very, very long time. To them, it was just another year of life. They went about life like they always did. To us, time stood still. For forever.

February 7, 2019

Dear Warrior Princess,

It’s the eve of your post-chemo MRI, and I can’t believe how long this road has been. It was somehow millennia and just seconds ago.

Life has a way with people. A way of moving on, whether you’re ready or not. It’s a weird thing to hear you talk about yourself the way you were “before,” like an old woman talking about her youth. In that nostalgic voice that old people often have, with some look of wanderlust in their eyes. That look of remembering and wishing. That look of “back then.”

You told me you wanted your before-cancer mom back. I told you that mom was gone. I’m still your mom. Just not that one, and I honestly can’t say that she’ll ever return.

Maybe pieces will come back....tarnished and worn but still recognizable. You just don’t come back from what we’ve been through without being at least a little insane. I have demons to live with now that I didn’t have before, just like you. Dark places that no one will ever see, ever know. It’s pretty scary there. And no amount of medication or therapy will make that disappear. I can’t unsee or unhear the last bit of forever. But there is light.

And that light is you. It always was.

In the beginning, I didn’t see a superhero, a warrior. I called you that because I hoped you’d become what you needed to become to live. To make it through hell alive. And you did.

Now, a new life begins. One with different struggles. A whole new life to live that’s always going to be filled with uneasiness, a waiting, a missing, and a mourning. It won’t go away. We’ll just learn to live with it. Or we’ll just learn to live.

I haven’t really seen you in some months now, some lifetimes ago. There was this girl who ran like the wind, who was youthful and happy. I remember. She laughed a lot and saw the good in everyone. Everything. I used to shake my head at her naivety. How stupid I was. She knew more about life then, I believe, than I probably ever will. And she knows so much more now.

We have indeed come a long way from where we began, sweet daughter. I have no idea where we’re going, but I definitely know where we’ve been. I’ll tell you all about it when I see you again.

Love you forever,

Mom

If you haven’t read the previous parts of this story, you can find Chapter 1 here, Chapter 2 here, Chapter 3 here, Chapter 3 Part 2, Chemo Round 1 here, Chemo Round 2 here, and Chemo Round 3 here.

If you or someone you know is a parent of a child who has or had cancer, I hope you know you’re not alone. Everything you’re feeling is valid. And, under no circumstances, should you apologize for it.

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For those of you who are new, I’m so grateful you’re here and you’ve chosen to support Hello, I’m Human! To learn more about me, my story, and why I’m wanting to build a community here, please check out “On Surviving Everything,” where I use my life experiences to connect with so many of you. Something I do love about my trauma, my life of adversity, is that it has allowed me to understand deeply the plight of others in so many life circumstances.

This is a safe place to say all the things. The things you say in your head. The things that you think you should be ashamed of even thinking. The things you fear. All the “undiplomatic” things.

Say it. Get it out. I’m here for it with no judgement and all humanness.

Because that’s what we all are. And that’s what we all deserve.

-Liz

I should preface this with the fact that I’ve never been skinny.

Born “big-boned” or “built like a brick shit house” as many used to say.

But I have been at healthy weights and very physically fit at multiple times in my life.

I don’t remember feeling pretty though. I don’t know that I’ve ever truly felt pretty. Even in my 30s when I was probably the most …

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Disclaimer: This post consists of graphic photos that may not be appropriate for all audiences. Please use your discretion.

Maybe you believe in life after death. Hell and Heaven. Maybe you don’t. Maybe you just believe we die and are buried, burned, or planted. Which has always sounded so peaceful to me.

Whatever you believe, I’m convinced that there is, at the very least, a hell in this realm. On this earth. And our family was most certainly in it.

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December 12, 2018

Dear Warrior Princess,

“It’s official now. I’m halfway back from hell.”

You were so groggy after the start of cycle three, but managed to still find a positive. I think.

Halfway back indeed. At least I hope. You fell fast asleep after that. I had them give you lots and lots of the good meds this time. The ones that make you sleep for days but will hopefully keep you from throwing up your toenails. We shall see. But, yes, hell it has been. Hell it is. More so for you than me, although some days I do question that sentiment.

Some may argue that hell is permanent, those who believe in that sort of thing anyway. That this is not as bad. I don’t know how they tell me that when they have been to neither this nor that hell. But whatever. I’d still trade. I’d probably sell my soul for you not to have cancer.

I heard that there are five new families whose entire universe stopped today. Five families that joined this hell. Just at this hospital. Five. In one day. I wanted to seek them out. I wanted to run to them, and in the deafening silence of the end of what was once their life, I wanted to hug them.

I wanted to tell them to take a deep, deep breath because they may not breathe for a while, but they’d somehow still live. Or at least be alive anyway. I wanted to tell them that their heart is, in fact, still beating, even though you’d swear it completely stopped. I wanted to tell them the tunnel is so long and so very dark and that they will feel like there’s never a light and never an end, but there is. I just know there is.

I wanted to tell them there are others just like them. Veterans in how to live without air (or sleep). Parents out there who call this hospital home and occasionally go to some house they used to live in to shower and maybe eat. I wanted to tell them that all these strangers they will meet, the nurses and doctors and Child Life specialists, the food service people, the janitors and CNAs and PTs, they will be your family, your salvation. Some may often stand between your child and death, and you will love them.

I wanted to tell them that short of their birth, you have never seen your child look as angelic as they will be lying in a hospital bed asleep with no hair…no eyebrows or eyelashes. You’ll swear that they have halos and wings and that they can literally do nothing in the whole world wrong ever again.

I wanted to tell them that what they so often feel is a prison will so much more often become their respite. It’s a strange feeling to suddenly feel like the confines of this room, of these walls, are so….comfortable. Safe. Quiet. When you realize that being home is actually more stressful than being at the hospital.

I wanted to tell them that it’s not their fault. And that one day, they may actually believe it. But I’m not entirely sure I do yet.

You told me the other day you had finally come to terms with death, that death is a natural part of life. And that you’d been to hell already, so you could only go up from there. I told you I was glad you and death had a heart-to-heart, but I hoped you’d stay here for a little while longer.

You said you thought you would. I told you I was pretty happy about that.

We may very well be halfway back from hell. I’m not entirely convinced. But I know one thing for sure. If angels ever did exist, I’m pretty sure I gave birth to one. She’s a size extra tiny. She’s got the most perfect bald head and almost no eyelashes, and she smells like flowers and nighttime, and she’s snuggled in blankets in a cold hospital room with poison coursing through her veins. And she’s giving Hell a run for its money.

Proud of you.

Love,

Mom

The last “Mommy!” I ever heard was the worst. I wish it had sounded different. I wish it were a last I couldn’t remember. I heard it well before I reached her room.

I saw my mom standing in the doorway of Big Love’s tiny hospital room as I walked, and eventually jogged, down the hall, returning from my one night at home. Mom and I alternated nights at the hospital. I hated it, but I needed it.

My mom’s face was solemn. Worried. Tired. And she blocked the view of Big Love calling me from the bathroom, where a couple of nurses sat with her as she violently threw up, blood trickling from her nose.

December didn’t feel like halfway back from hell. It just felt like…well, hell. A special kind of hell all its own.

Big Love continued to decline. Cycle three told cycles one and two to hold its beer. Baby Love, my youngest daughter and love of Big Love’s life, stubborn little soul that she was and still is, refused to leave her side for most of the month.

Baby Love slept in all manner of places in December. Sometimes, just on hospital blankets we made into a pallet on the floor by Big Love’s bed. Because there was no room for an air mattress. The night nurses were ninjas and stealthily stepped around her to attend to Big Love’s meds. Sometimes Big Love would let her sister squeeze onto that tiny hospital bed with her. I’m quite sure I have a picture stashed away somewhere of Baby Love curled up in a ball, sleeping on the foot of the hospital bed.

Sometimes I’d give up my recliner so she could sleep, while I paced the empty, quiet halls of the hospital throughout the whole night. Areas that were bustling during the day but strangely peaceful at night.

At the sweet age of 10, Baby Love had seen more than her fair share of adulthood. And, while I wanted to stop it, I simply couldn’t bring myself to make her leave her sister’s side.

We had, mistakenly, held out hope that Big Love would get to be home for Christmas.

Instead, she had a nosebleed that turned into a crisis.

They called in specialists, teams of people…a crash cart.

She bled from her eyes, nose, mouth. She threw up blood clots the size of lemons. They gave her round after round of platelets and blood transfusions. Baby Love stood by her side, holding her sister’s head up so she didn’t fall asleep in the bucket of blood and gauze. Concentrating solely on keeping her sister as comfortable as possible. Rubbing Big Love’s bald head and telling her it was gonna be ok.

I don’t know if Baby Love believed that. Hell, I don’t know if she even remembers it now. At the ripe old age of 18, I think Baby Love, rightfully, blocked out a lot of her memories of that time.

Or maybe she just chooses to keep moving forward.

Whatever the case, Big Love lived through that night. I remembered the conversation she and I had a couple of weeks prior about death. How she’d said she’d stay a while longer.

I’m glad she was right.

December 22, 2018

A Letter to the Public

This is not where we wanted to be this Christmas. Or today. Or ever really. But here we are. Cancer has, essentially, ruined our lives.

I’ll tell ya what, though. If you’re feeling ungrateful. If you’re feeling like your life is pretty much shit. If you can’t find a single positive word to say in your particular situation, maybe take a little walk down the inpatient pediatric hall of any major hospital. I know a good one.

Listen to the guttural, earth-shattering wail of a mother who’s listened to the doctor call her child’s time of death. No sound on Earth compares. It’ll bring you to your knees. I promise.

Look through the open doors of the room of a bald cancer baby who hasn’t had a single family member by his side because he’s an orphan. Sitting in a crib in a dimly lit room. The nurses are his family. Watch through the window to the room of the child who’s getting the highest possible dose of chemo and can’t stop throwing up or the one that’s sedated because they’ve had so many seizures, that’s the only way to make it stop.

Go see the child whose head is completely deformed due to trauma. Look at them. Listen to them. See them. See the parents. The ones who have been there weeks on end... months, some of them. They’re so, so tired. So worried. Overwhelmed, undernourished. Barely functioning.

Come. Come see them. See the kids who are dying. See the kids that are fighting for their lives, without complaint, every single day.

Our lives really, really suck right now. But I’ve learned that I can be angry and grateful at the same time. The picture I see here is so much bigger than our family’s little world. And things like having a child who’s still alive become more important than not being home for Christmas. Being here reminds me that I can be angry and heartbroken and thankful and relieved all at once.

We’re not burying a child this Christmas. Everything else is really small potatoes.

I’ll always be a cancer mom. Our family will always be cancer parents, grandparents, and siblings. There will always be an aftermath for many years to come. But Big Love will not always have cancer. And right now, on this day, she’s still living. And that’s the best Christmas present ever.

So if you’re thinking about complaining about your life, your kids, your husband, the holidays, your coffee, someone’s driving; if you’re tired because you worked the past I don’t care how many days, or you just think life sucks, come see me. Let me show you. There are bigger, badder, worse things. Real monsters under the bed. Those things don’t stop just because it’s Christmas. And you may find that you can, in fact, be angry and grateful too.

If you haven’t read the previous parts of this story, you can find Chapter 1 here, Chapter 2 here, Chapter 3 here, Chapter 3 Part 2, Chemo Round 1 here, and Chemo Round 2 here.

If you or someone you know is a parent of a child who has or had cancer, I hope you know you’re not alone. Everything you’re feeling is valid. And, under no circumstances, should you apologize for it.

Subscribe now

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For those of you who are new, I’m so grateful you’re here and you’ve chosen to support Hello, I’m Human! To learn more about me, my story, and why I’m wanting to build a community here, please check out “On Surviving Everything,” where I use my life experiences to connect with so many of you. Something I do love about my trauma, my life of adversity, is that it has allowed me to understand deeply the plight of others in so many life circumstances.

This is a safe place to say all the things. The things you say in your head. The things that you think you should be ashamed of even thinking. The things you fear. All the “undiplomatic” things.

Say it. Get it out. I’m here for it with no judgement and all humanness.

Because that’s what we all are. And that’s what we all deserve.

-Liz

I feel like trying to find my purpose has been a very strong resounding theme in my life from the time I was very young.

And each time I thought I found my reason for existing on this planet, turns out, I didn’t.

In middle school and all throughout high school, I was certain I wanted to be an interior designer. That’s what I planned my life around. Getting into the best college interior design programs.

Leaving my small town in the dust with preferably no traceable evidence of where I was going was the plan. I’d had enough trauma there and thought big city living as a childless, rich interior designer was my purpose.

It wasn’t. I hated interior design before the end of my first semester. And, like many confident-in-what-they-want-to-do college students, I floundered hard after dropping out of the program. What the hell do I do now?

By that time I’d met my ex husband online anyway, and that kept me away from figuring it out. Especially after he flew across the ocean to marry me.

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I’ve waitressed, nannied, been an interpreter for the deaf in public schools, worked with special needs preschoolers. All of those things in the 5 years after I left college and got married. I even did office work through a temp agency. I got “let go” from many of those jobs. Others I just quit because I couldn’t “hack it” for one reason or another that I told myself. An unexpected pregnancy was certainly off path, and I stopped thinking about my purpose for some years.

Instead I survived. Abuse, loss of a child, the birth of two children, medical complications, poverty, friendlessness. That’s all I could do, really. Survive.

During that time, I kept children in my home to help make ends meet for our family. My ex husband spent every dime he made as fast as he earned it. Sometimes faster. So my purpose was keeping kids alive (including my own), paying bills, or, rather, picking which bills we could afford to pay, and enduring the never-ending mental and emotional abuse of my ex husband.

But was that my purpose? Was that what I was made for? Surviving. Caregiving? Keeping other people alive?

Eventually, I got involved with a fundamentalist Christian church. My ex husband hated it because it was the one place he had no control over me. Also because he wasn’t religious at all, and it highlighted every nook and cranny of his evilness to himself. So naturally, I loved it. I had safety. I had something that felt like friends. I had a purpose: serve God, honor my marriage, trust Him to change my husband’s heart.

When I confided in a woman from that church about the abuse — years of it by then — and asked her if I should leave, she said she wouldn’t. That this was an opportunity to honor God.

I stayed.

We even did Christian couples counseling. In retrospect, it was a perfect way for him to continue looking like the neglected, broken, deserving-of-grace man that he’d always convinced others he was. While I looked like the crazy, accusing wife.

We left that church when we had to abandon our home and move to Charlotte (You can learn more about that story in “On Surviving Everything.”). But I came back to it, unfortunately, some months later when I moved back without my husband.

It took me years after I finally left for good to understand that the church wasn’t saving me. It was just another place I’d handed my sense of self over to someone else for safekeeping.

My purpose wasn’t there either.

I remember when I met the man who is now my husband. I remember being shocked that he’d want someone with two kids, no job, living in a back room of her parents’ house, with almost zero skills to support a family. And, most of all, no purpose in life.

By that time I’d started a tiny, off-the-books photography business — just enough to help my parents out and contribute when I moved in with my now husband. It was fun. Gratifying in a way most of my jobs hadn’t been. I helped people preserve memories. Told their stories through images. Helped them share their lives with the people they loved.

Looking back, I can see the thread running through it even then. I was always drawn to helping people feel seen. To keeping their stories safe. I just didn’t have a name for it yet.

When the competition got too steep and the resources too thin, I let it go. Kept my camera for friends and family. Free of charge.

Soon after that, I talked with an old friend I’d grown up with who was a paramedic. She encouraged me to take the EMT course. From there, I just knew that was my purpose. It felt so perfect and real and I was good at it. I saved people’s lives…or helped to do so, at least. I calmed people down in their darkest moments.

I also cleaned houses, off the books, of course. I made good money too and for a hot second thought, maybe this is what my purpose looks like too. Serving people. Taking care of people. (Oh joy! Another business idea! *eyeroll*)

A resounding theme in my life.

Which I absolutely refused to believe. At the time anyway.

I had to quit both those jobs when my daughter got diagnosed with brain cancer. There was just no way to work the grueling schedule of being an EMT, clean houses, and take care of her needs at the same time. My husband and I still weren’t married at the time, and I have always been the primary caregiver for both my girls. Their dad gave up custody in the divorce.

So he stayed home and took care of my youngest daughter, my bonus daughter, all the phone calls, fundraising, organizing, money management. Literally everything outside of cancer kid’s actual care. It was a lot. And it was definitely his purpose during that time.

But, once again, my purpose was caregiving. In the worst possible way.

It was also during that time that I thought I found my purpose again. My real purpose this time. Sharing my writing skills, my storytelling skills with the world. And using those skills that I’ve had since I was a little girl to make money for our family from anywhere we are in the world…even a hospital room.

I was never going to let our family be without money ever again.

Fast forward six years and I’ve built a half assed copywriting business. Not half-assed on purpose. On my end, it’s full-assed. It just turned out half-assed. I bootstrapped it from the get go until the pandemic when I lost all my clients and had to get a full time job. Which was kind of a relief.

But not my purpose it seems.

Here’s what I know about myself after 45 years of looking:

I am not going to be famous. I’m probably not going to be rich. I didn’t finish college — three times, which is its own kind of commitment if you think about it. I’m not the loudest voice in any room or the most credentialed person at any table.

What I am is someone who has survived things that break people. Who kept children alive — her own and others — through some of the hardest years a person can have. Who calmed strangers down in their worst moments. Who preserved people’s stories through a lens. Who is now, apparently, telling her own story on the internet and finding that it matters to people.

Maybe that’s not exceptional by the world’s definition.

But it’s something.

There’s nothing in me that wants to live a luxurious lifestyle. I just want to experience beautiful places, people, and cultures. And have enough to live on when I’m old.

When I look back at the through line of every job, every season, every failed purpose — the caregiving, the photography, the paramedic calls, the copywriting, the writing — there’s only ever been one thing at the center of all of it.

Helping people feel less alone in their own stories.

Maybe I wasn’t searching for my purpose.

Maybe I was just living it the whole time.

I’m not going to say I won’t start another business, another venture, in an effort to make more money, have financial freedom, stability, travel options, memory making options.

What I will say is that I don’t think I care anymore about purpose. Finding it, what it is, none of it. I care about doing the things that come with ease and feel right to me. Not to be confused with something being easy. Things can come with ease and still be challenging. I’ve fought so hard for 45 years with my head and my heart to figure out why I exist.

Maybe it’s time to stop fighting and keep existing. Maybe at the end of my life all the things I did with ease will have been my purpose. Maybe we don’t even need a purpose to exist.

I’m just too tired to care.

And maybe that’s the point. We’re not supposed to.

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I lied to her. It was not ok. Nothing was ok. But that’s all I could think of to tell her.

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They said the first cycle is always the worst. That it would get easier.

They said only a small percentage of kids get such and such side effects…hearing loss, deadly infections, fevers, blood transfusions. And that most can keep food down.

They said most patients just stay in-patient on the cancer floor for a few days during the actual chemo cycle and then get to go home.

They said, they said, they said.

I have since learned they say a lot of things. I’m sure they meant well.

I thought it would be easier. The second cycle. Not because they said so. And not in the sense that you’ve mastered something, a subject maybe, and are ready to move on to something harder.

Easier in the sense of defeat. Like when you’ve finally relinquished something you can’t change or control, and there’s that relief, albeit mournful, that comes along with letting go and moving forward. But it wasn’t. It was neither of those. It simply didn’t get easier.

It was more like cycle after cycle of grief. Denial, anger, bargaining, depression, acceptance, repeat. Over and over and over.

They started the second cycle of chemo on a Monday. And Monday lasted a couple of days. A couple of days that I’m sure were an eternity. I thought the light at the end of the tunnel was Tuesday, but not so much. So I toasted to Wednesday even though I was unsure, at the time, that Wednesday wasn’t going to be a Monday too.

Each cycle was supposed to last four days. All inpatient. Then you were supposed to be discharged home and come back a week later for an outpatient dose. But we seldom got to go home.

Big Love was only well enough to do that in October during her first cycle. She got five decent days. I was so thankful for those five days. She smiled a couple of times. We dressed her up as the Queen of Hearts from Alice in Wonderland, and her sister, two and a half years her junior, wheeled her around, making sure her big sister got candy. Making sure she got seen. Even though we couldn’t always wheel her to the door, much less get her to say “trick or treat.”

Candy she’d never eat. She’d lost about 35 pounds since September, and the only real nutrition she got was through the tube in her nose. I had to replace it every so often, which was always an ordeal.

Anyway. Somewhere in there, in those five days, I guess I took a breath. Maybe I came to the surface. Or maybe someone gave it to me. I don’t really remember now. Since I still felt like I was drowning.

Cycle two seemed to be a completely different beast all its own.

Big Love told herself she was ok in between heaves. In between spitting out bright yellow colored bile and mucus, and some blood from the irritation, from the vomiting.

She used to do that when she was little, too. She’d fall and skin her little knee or bump her head or get scared, upset. “I’m ok. I’m ok. I’m ok,” she’d say with tears rolling down her sweet little cheeks. When I think back on it, I shouldn’t have let her.

I should’ve told her it’s ok to not be ok. But I don’t think I even knew that back then.

Anyway, I approved so many anti-nausea meds that first day of cycle two that they told me there wasn’t anything left to give her.

I felt defeated yet again. Powerless to help…again.

Then they ordered an EKG to make sure her heart was strong enough to withstand the meds...the ones they already gave. The ones that were supposed to be helping her not throw up because of another med that protects her kidneys from a toxic med that is supposed to help “cure” her cancer. Take a moment. Those of you reading might need a second to process that.

Meds on top of meds on top of meds. Side effects on top of side effects. Treating symptoms.

So yeah, Monday didn’t end after an audiology exam, labs drawn (3 times), 3 pints of blood, and 10 hours of waiting for a room. Monday didn’t end after they told us she couldn’t have her chemo due to understaffing. And it didn’t end on Tuesday either. It was filled with tears and frustration and more downs than ups. It was filled with disappointments and fears and lots of empty reassuring words. Ones that I spoke but didn’t believe. It was filled with doctors and nurses and tubes and one tiny little Warrior Princess fighting one big war.

And me.

November is the month when everyone is thankful. Supposedly. They pick out pumpkins and fall decor. They talk about who’s bringing what to Thanksgiving dinner. They make pies and spiced cider and watch football, or play football.

They go about their November days like any other days. And maybe they’re a little more thankful than they are in other months.

I was just thankful that my beautiful, firstborn, with angel kisses on her eyelids and one single dimple on her left cheek, was still alive. In whatever form she was in any given moment.

On November 7, 2018, after finally getting her to sleep after a long three-day Monday and what I felt sure was enough drugs to put down a horse, I sat in the hospital recliner I had somehow learned to kind of love. In the cold, dark abyss of the room and my thoughts, I guess that being thankful she was still alive was all the thanks I could muster up.

And that was enough.

November 29, 2018

Dear Warrior Princess,

I’m both impressed and sad that you’ve held it together this long. An eternity of days and nights have passed, where we’ve put the elephant in the room on the back burner and fought fire after fire after fire. The fires that were right in front. The ones that needed to be fought. And hence, the elephant is in flames.

You’re so afraid of death. You ask me if you’re going to die. But I can’t promise you life. I never could. It is not my promise to make. We are so used to taking life for granted that we forget that death is certain. You’ve probably had thousands of near-death misses by now. Yet, you live.

Except you don’t.

You are so consumed with dying that any life escapes you. I see a shell where my still beautiful daughter stands. She is not dead. But she is not living. She is in limbo. And I think that’s worse.

I miss you. I miss you more and more every single long, eternal day that passes. My heart aches, longs for the girl that once was. It hurts. The pain is raw and real and immovable. You’ve drifted so far away from me.

Do not be afraid. Do not let something uncontrollable control you. Do not let your whole self be consumed with death. Lay it to rest and live. Because today, you’re alive. And today is all that matters. Tomorrow will come. And we’ll meet it when it does.

Until then, I’ll be in the waiting.

Love you forever,

Mom

If you haven’t read the previous parts of this story, you can find Chapter 1 here, Chapter 2 here, Chapter 3 here, Chapter 3 Part 2, and Chemo Round 1 here.

If you or someone you know is a parent of a child who has or had cancer, I hope you know you’re not alone. Everything you’re feeling is valid. And, under no circumstances, should you apologize for it.

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Nobody tells you that surviving your own life sometimes feels like a wish for death.

Sometimes more than sometimes.

Not because you want to die exactly. But because the weight of one seemingly unsurvivable thing after another gets heavy enough that the idea of putting it down — even permanently — starts to sound like rest.

Respite.

My name is Liz. Former EMT. Behavioral psychology nerd. Nonprofit copywriter. Mother. Survivor of more things than any one life should reasonably contain. Like many of you out there.

Also just like you, I didn’t have a manual.

And, in your best Law & Order SVU (the TV show) voice, “This is my story.”

Before Everything

I was not an easy teenager.

I was looking for something I couldn’t name yet — validation, safety, the feeling of being chosen. I’m still not sure I know what I was looking for or why. But I sure did look for it in places that cost me more than I understood at the time. I looked for it in makeout sessions with random boys. Going almost “all the way” but not quite. I looked for it in drugs, smoking, alcohol, ouija boards, stealing from grocery stores. I looked for it in places and ways and people that I carry shame about to this day.

Most impactfully and ashamedly, I looked for it in a much older man. Someone who made me feel seen and special and mature in ways that had nothing to do with any of those things and everything to do with the fact that I was young enough not to know the difference.

I’m still working through that shame, and the return to that search for that something and those ways even later on in life. Which led to more shame. And more hurt.

And, I think, maybe Sam helped me continue that harmful narrative.

If you’re still here, I hope you’ll join the club and stick around for future stories!

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Sam

I met him in an AOL chat room in 1999.

He told me his name was Sam. He was from England. Funny and attentive and across an ocean, which felt safe in a way I didn’t examine too closely. He made me feel completely seen. Beautiful. Heard. Like I was the most interesting person in any room even when the room was just the two of us and a dial-up connection.

I was already in love with him when I found out his real name wasn’t Sam at all.

But I pushed that aside. Made excuses.

I pushed a lot of things aside back then.

The passport photo I didn’t find attractive. The voice in my gut that said something isn’t right here. I quit college after my freshman year. Moved back home. Waited for a man I’d spent maybe three weeks with in person to fly across the ocean and marry me.

We got married six weeks after his second visit to the U.S.

I was twenty years old.

That first summer, my parents went camping and left us alone in their house. I don’t remember what Sam got angry about. What I remember is being held against a wall while he screamed in my face. I remember the silence afterward. I remember not telling my parents when they came home.

I told myself it was a one time thing.

It wasn’t.

The abuse got quieter and more precise over the years. He controlled all the money. Isolated me slowly — no friends, no social media, no life outside the one he approved. I “fought” back but paid for it dearly. He drank constantly, stacking beer cans in dresser drawers, hiding the evidence badly enough that I could see it and well enough that I didn’t have a name for it for years. He sold things, and convinced me to do the same, to pay the bills. I sold special things. He held nothing with any sentimentality.

He told me I was lucky to be with him. That if I left, no one else would want me. Not with two small children, no job, and…fat.

Outside our home people loved Sam. Charming. Funny. Smart. Hardworking. Dependable. A posh English accent that all the girls swooned over. The one that eventually made me want to violently hurl all over his work boots every time I heard it.

Inside our home I was disappearing one small piece at a time.

Narcissistic abuse works through intermittent reinforcement. The same mechanism that keeps people pulling slot machines. The good days — and there were good days — kept me hooked far more effectively than consistent cruelty would have. My nervous system got addicted to the cycle before my brain understood what was happening.

By the time the abuse was obvious I’d already been convinced I deserved it. That I was in the wrong.

That I was the “crazy” one.

I’ve learned since that this is exactly how emotional and mental abuse is designed to work.

I always had support available. My parents were there. They knew more than I realized. They watched and they waited and they told me later they understood that forcing me to leave before I was ready would have cost them me. Or that’s what they felt anyway. So they left the door open and waited for me to walk through it. Day in and day out for over a decade.

But I was too proud. Too stubborn. Too something I still don’t have a word for.

They had already done so much. Picked up so many pieces of me after so many mistakes. I already lived with the shame of my choices during teenager-hood. And they’d given us enough money to surely retire on. Money to cover what Sam spent. Money to keep the girls well-clothed, well-housed, and up to their neck in toys and books. I couldn’t go back. Couldn’t burden them again. Especially not with these two small children.

So I stayed. And it cost me almost everything. I’m still paying for those choices almost two decades later.

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Sebastian

Before Sam and I had to leave our first home with a 2 year-old and a newborn because he’d slept with a woman from work and her husband found out, there was Sebastian.

I got pregnant with him when my first daughter was eleven months old. Still nursing. Hadn’t had a period. Didn’t think pregnancy was possible.

Everything went normally until we scheduled a routine ultrasound on my 26th birthday — a fun thing, we thought, to find out the gender.

It was not a fun thing.Turns out I had quite a few rough birthdays in store for me. This one was just the first.

Sebastian had hydrops. Encephalitis. His organs were growing on the wrong side of his body. The doctors told us he would not survive to term and that continuing the pregnancy put my life at serious risk. I remember seeing the halo around his sweet head in utero. The reality was that it was holding all the fluid slowly creeping into his tiny body.

But in my head I always remember him as an angel.

I had a daughter at home. I could not leave her. Not with Sam. Not with anyone.

We had genetic testing done to be certain. The geneticists were shocked when nothing grew on the samples. There was no indication he was going to live.

At twenty weeks pregnant, on the worst day of my life up to that point, I chose to give birth to my son.

We were so poor we couldn’t afford a burial. I donated his body to the hospital for study.

The nurses wrapped him up afterward. Put him in a bassinet. Left him there in case I changed my mind about holding him, seeing him. Acknowledging him. In that very, very dark hospital room, the light of the bassinet shone bright above him. It was the only light. The nurses offered footprints. Photographs. A small memory box.

I said no.

I have regretted that every single day since.

I know why I said it. I was a traumatized young mother running on nothing with no real support and a brain trying to protect me from more pain than I could already hold.

I know that.

I still reach for the weight of him I never felt sometimes. I still imagine in my head what it would’ve been like if I had just gone over there. If I had let myself feel him. If I had let myself feel.

His name was Sebastian David. He was real. He was mine. And he deserves to be named out loud.

And he made room for Anabel Rose. My rainbow baby. Another salvation. A similar but very different salvation from her older sister. Five months after Sebastian, I got pregnant again.

Anabel saved my life. And she has many times over since then. But on this occasion, the pain was so great, so incredibly gutwrenching, I couldn’t imagine anything making it even slightly better other than another child.

Her pregnancy was considered high risk. Extra appointments. Extra monitoring. The doctors watching both of us carefully the whole time.

And yet — everything was perfect.

Thirty-one hours of labor. And then there she was.

Anabel. Born with a few small heart murmurs. Most closed on their own. One tiny one didn’t.

I’ve thought about that unmended place in her heart for years.

I think Sebastian made space for her.

I really do.

Sam resented me and her forever. For letting go of the only son that would carry on the family name. Wear the family crest. She and I both paid for my decision many times over throughout the years.

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Charlotte

The end of my marriage came slowly and then all at once.

An affair. An angry husband. A job transfer to Charlotte, NC — three hours from everything and everyone I knew — that turned out to be less about the job and more about the girlfriend. Or, rather, the girlfriend’s husband.

Might as well have been the middle of the Sahara Desert, as far as I was concerned.

We were completely isolated in a roach-infested apartment with one car, two babies, and a husband that was never home…even when he was. I had no money, no degree, no marketable skills, no way out that I could see.

Eventually Sam stopped going to work entirely. He stayed drunk every moment he was awake. I pretended everything was fine. For the kids. For me. I don’t remember being able to do anything else.

A lot was a blur during that time. He and I didn’t really talk. I took care of the kids. He drank, played video games, and talked on the phone with his girlfriend.

Then, one night, after about 5 months of literal hell, I realized we had no food. One box of macaroni and cheese. No milk. No butter. Nothing to make it with. Anabel was still small enough that I was nursing her. But Avery had to eat. I think I gave her baby food that night. I used to make it from scratch and freeze it.

It was cheaper that way.

I called my mom. I don’t really remember the whole conversation.

But I know she didn’t interrogate me. Didn’t say I told you so. Just showed up the next day with a moving truck and a neighbor boy I’d grown up with.

The whole day Sam sat in that apartment drinking and playing video games and talking to his girlfriend. Beer cans everywhere. The whole place smelled like stale beer and the end of something.

He told my mother I was a bitch and he hoped I’d die.

We kept packing.

I don’t remember the drive home. I remember feeling heartbroken and completely, overwhelmingly safe for the first time in years.

If you’re standing in your own version of my Charlotte apartment right now — too proud to call, too stubborn to ask, too something to let the people who love you help — I want to say to you what I wish someone had said to me:

You can’t fix him. He’s not worth it. You deserve better. It’s safe to let go. There is life on the other side of this scary situation. No matter what your brain or emotions are telling you.

There is. I promise you there is.

The Man Who Came Next

There’s a lot more to tell about that story. Details. Traumatic events within traumatic events within traumatic events. Like those little Russian nesting dolls.

But I’ll save those for another day. Multiple days. Because that wasn’t, in fact, the end of my god-awful marriage to who my grown kids now simply call “bio dad.”

I’d much rather move on to tell you about my husband because the story doesn’t work without him.

I wasn’t even looking for another partner. I say partner because I definitely wasn’t looking for another husband.

But my friends encouraged me to go on some dating sites, just for a laugh.

He was boisterous and funny and cute and doting. Boyish but also a man. I could tell immediately that he was a hard worker. That he loved his daughter fiercely. He would make up stories sometimes — exaggerate a little, make himself seem more than he was — and I could see underneath it immediately. He’d been hurt before. He was insecure in the way people are when life has taken some pieces of them.

He was squishy on the inside even though his shell said something different.

His actions showed me everything his words couldn’t quite say yet. Dedication. Loyalty. Persistence. The kind of love that shows up and keeps showing up without requiring you to perform gratitude for it.

After Sam, I didn’t trust easily. I didn’t trust my own judgment. I had spent a decade being told I was lucky anyone wanted me at all.

And here was this man. Consistently, quietly, without drama, showing me something completely different. He treated me like his wife from day one. And called my kids his own.

Everything felt different with him.

Including, eventually, me.

The Waiting Room

Six years into our life together, I was sitting in the waiting room of a radiology office.

The nurses came and got me quietly. Asked me to follow them to a private room.

I knew before they said a word.

I felt all the color leave my face. All the energy leave my body. Like I was floating somewhere outside myself, looking down at a woman who was about to have her life divided into a before and an after.

My daughter had brain cancer.

She was 12 years old.

This time I was not alone. My husband was there — the man who is squishy on the inside — and he stayed. Through every waiting room and every appointment and every 2am and every moment when I didn’t know how to be okay, he stayed.

What happened after that moment — the treatment, the fear, the things I learned about love and about what the human body and spirit can survive — I’ve written about in Letters from Hell. You can find Chapter 1 of that here if you’re interested. I can’t tell that story in a paragraph. It doesn’t fit in a paragraph. I don’t know if it even fits in a book.

What I can tell you is this:

Being a cancer parent is nothing like the awareness ribbons.

You become an expert in something you never wanted to know anything about. You learn to read between the lines of what doctors say. You learn which questions to ask and when to push and when to just get through today. You learn to hold terror and hope simultaneously without either one killing you.

You learn that the human capacity for functioning under unsurvivable circumstances is genuinely, breathtakingly extraordinary.

Not because we’re strong. I want to be clear about that.

We are not strong.

We’re just not done yet.

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Dee Dee

Through all of it — the teenage years, the marriage, Sebastian, Charlotte, the cancer years — there was Dee Dee.

Dee Dee is my Major Depressive Disorder. I gave her a name because my daughter suggested it. My brain cancer surviving, neurodivergent, extraordinary daughter who has done her own hard work on her own hard things and came out the other side handing me tools that helped her most.

She’s smarter than me. I’ve accepted this.

Dee Dee has lived in my brain since I was a teenager. She’s not always loud. Some days we coexist. The coffee tastes good. The light looks a certain way. I remember what gratitude feels like.

But she’s always there.

On her worst days she tells me my kids don’t need me. That my husband deserves someone easier. That the relief of not existing would feel like rest. I know now that’s Dee Dee talking. Not truth. Not me.

It took years to learn the difference between her voice and mine. I won’t pretend I always hold that distinction easily.

I have a system now. Each morning I wake up already knowing what kind of day it’s going to be — if you have depression you understand exactly what I mean — and I give it a number. Zero to ten. Zero is the floor. Ten is Dee Dee on vacation. With each number I decide what I need and I tell my people.

What I wish someone had told me years ago that high functioning doesn’t mean fine. It means you’ve gotten very good at carrying it quietly. That’s not a compliment. It’s a description of something unsustainable that eventually needs replacing with something real.

Like lots and lots of therapy. Medication if you need it. Naming the thing. Telling your people. And understanding that Dee Dee’s voice is not your voice.

A reminder for you and me both: You are not your depression.

What Actually Helps

Definitely not the platitudes.

Not “everything happens for a reason” or “you’re so strong” or “at least…”

Here’s what actually helps me and might help you too:

People who show up without being asked. My mom with the moving truck and no questions. My husband staying through every waiting room. My daughter handing me tools meant for her. People who stay. Just hang out. Even when it’s uncomfortable.

Letting go of pride long enough to be helped. This is hard. I was so determined not to be a burden. So committed to handling it alone. So convinced that needing help meant I had failed somehow.

It didn’t mean that.

It meant I was human. And humans need other humans. That’s not weakness. That’s just biology.

Biology that I still struggle with. But I’m still trying.

One true sentence at a time. The most healing thing anyone ever gave me was permission to stop pretending. To say “This hard. I don’t know what to do.” One safe person that stuck around through all the shit. When I don’t know what’s next. Or when I do, but don’t know how to do it. Don’t know if I can do it.

Understanding the why. Knowing the behavioral psychology behind what I was experiencing — the trauma responses, the hypervigilance, the intermittent reinforcement that kept me stuck — made everything feel less like personal failure and more like predictable human responses to abnormal circumstances. That reframe changed everything.

Dark humor. Laughing at the absurdity of the unsurvivable is not disrespect to the suffering. It’s how some of us stay human inside it.

Why I’m Here

I write this because I spent years looking for someone who would tell me the truth.

Not the sanitized version. Not the one where everything happens for a reason and the suffering turns out to be a gift. Not the version that makes other people comfortable at the expense of the person actually living it.

The real version.

The one that says the pantry is empty and the marriage is over and you’re floating outside your own body in a radiology waiting room and you are making it up in real time and there is no manual and that is terrifying and okay and human all at once.

I couldn’t find that person. Or, rather, I didn’t want to use the person I have in that way. And that’s my own demons popping through.

So I decided to become her instead.

And, if you’re in a hard thing right now — any version of hard, your specific unsurvivable thing — I want you to know:

You are not crazy.

You are not too much.

You are not the thing that was done to you.

You don’t have to have a manual.

Nobody does.

You just have to keep going until the circumstances change or you change or both.

And then one day you’ll be on the other side of it.

Writing about it on the internet.

Drinking your coffee.

Telling the truth.

Welcome to the club.

— Liz

If this landed somewhere real for you — subscribe below. I write twice a week about the things nobody talks about at dinner parties. If you want to start at the beginning of my story, Chapter 1 of Letters from Hell is right here waiting for you.

And if you’re in a dark place right now — the kind where rest sounds like it might look like something permanent — please reach out to someone you trust, your therapist if you have one, or text or call 988. You deserve to still be here. I mean that.

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Every coffee run. Every cigarette smoked. Every meal, shower, and toilet run. Every trip home from the hospital to see my husband and other two children. Every kiss. Every hug. Every spoken word between a very sick little girl and her mom.

When would be the last time I rubbed her beautiful, bald head? Or smelled her scent, the one that’s unique to every person when they’re born. Would she live for me to see her deep, dark, luscious, double-layered eyelashes grow back in? When was the last time I saw those?

I don’t remember.

What about her voice? That sweet, melodious, calming voice. When I went home to visit for the night, was that the last time I’m ever going to hear her tell me “I love you”?

Someone once said every moment is beautiful because we’re all doomed. We all die.

The thing is, we don’t treat life like that. Most of us, anyway. Until something dooming happens.

But in this very long, intensely dark night, this time of forever during cancer, I did my very best to treat every moment as a last.

September 24, 2018

Dear Warrior Princess,

You weren’t a thought in my head when Hurricane Fran came through. Not by far. But I remember it like it was yesterday. So crystal clear. Maybe it’s because we just had a hurricane. Or maybe because it reminds me of cancer.

I remember the eye coming through our little town. The initial hit of the storm had passed, and it was suddenly so very quiet. Still. There were no birds or crickets. There was no rain, no wind, no buzzing of electricity. No sounds of cars or even sirens. And it was dark that night. Pitch black. Grandma, Granddad, and I stood outside. It was so eerie, surreal. And we waited.

You see, the initial hit of a hurricane is rough. You’re not sure exactly how bad it’s gonna be, but you know it’s gonna suck and, more than likely, the damage will be impactful.

But the other side of it. That’s always the worst. It’s the side that often lingers, sets in, and drenches communities in devastating loss and chaos that can last years. Such is the eye of our storm. Such is the other side.

Since we’ve returned from our incredibly long whirlwind of surgeries, hospital stays, and radiation treatments, we’ve had our ups and downs. Emotions have certainly run high, and adjusting back to life at home has been no easy task for either of us. But it has since somewhat calmed. And we are waiting. Waiting in this eerie sort of silence. It’s an unnatural sort of feeling. Uncomfortable.

That first hit was huge and fast and strong. Devastating. Constantly keeping us on our feet. Trying to stay just even a half step ahead. And the eye of our storm is passing ever so quickly. In some ways, I’m glad. We can’t stop it. So we just as well face it, and I suppose we’re as prepared as we’re ever gonna be. In other ways, I’m not so glad. Because this part of your storm, our storm, will seem so much longer and harder. Endless nights of torrential rain, winds, and darkness.

The aftermath will be devastating, as that of all major hurricanes is. When it’s over, we will be left to pick up the pieces of our lives, the pieces of you, and put them back together as best as possible.

There will always be evidence of damage. It will be years before the air can even remotely be considered cleared. We will never be the same. You will never be the same. And we will always be waiting for the next big storm.

I miss you....at age 2, 3, 5, 10...12. I miss you at every age before cancer. Every moment before we knew. I still see you every now and again. And you come to me in dreams. But it’s not the same. This storm has already broken away so many pieces of who you are. I’m utterly terrified to see what the rest will do. Heartbroken.

I want you to know that you are not in this storm alone. We will pick up the pieces of you together when it’s over. And whoever you are when this is done, I will love. I will always mourn the loss of you from years past. From that lifetime ago, before cancer. But I will also celebrate whoever you become. Whoever you are in each moment you’re alive.

The eye is quickly coming to a close now. I love you more than to the end of space and back infinity times. We’ll meet for cake and ice cream on the other side. I’ll bring balloons.

And glue.

Love,

Mom

October 9, 2018

Dear Warrior Princess,

I wanted to yell at you to stop. It would’ve been a sudden outburst breaking the silence that held the tension close. I wasn’t ready. But you were.

You were cool as a cucumber, almost like you had accepted this years ago. Not that it mattered anyway, whether I yelled or not. Someone has to press the button. Might as well be you. Maybe it was a relief for you. The wait was over. That specific wait, anyway.

But not for me. For me, the wait has just begun.

After they finally decided to start the first round of chemo, it took over an hour of prep. They gave you drugs for nausea, drugs to protect your hearing. They gave you drugs to protect your kidneys and a drug to combat the side effects of one of the drugs they’re giving you to protect you from the drugs that are meant to cure you. Supposedly anyway. I sat and watched. And waited. You played on your phone. I bit my nails and paced and twirled my hair. You ate a Jolly Rancher.

I felt like I was gonna throw up, even though the barf buckets scattered around the room are for you. I’m wishing I hadn’t emotional eaten that burrito a little while ago. That was most definitely a mistake.

Anyway, you pressed the button, and I watched your blood pressure plummet. We waited. A doctor, two nurses, a crash cart, and me. It was quiet, except for the occasional beeping of the machines. That terrible stillness again. And when the stillness passed, I could hear the whole room sigh with relief.

You went to sleep, and I listened to the clicks of the poison entering your tiny little body until I couldn’t listen anymore and left the room to escape to my old bus stop stomping ground, where the homeless and people of questionable character hang out, and people like me go to smoke. And occasionally take the bus. It’s very different from my bus stop in Florida at the Ronald McDonald House, but I couldn’t listen to those clicks for a minute longer.

I’m torn between feeling like I’m being melodramatic and like this is quite possibly the realest and most significant event ever in our lives, in my life. In yours.

I don’t know what I was thinking it was gonna be like. Maybe I had come to terms with it, right up until it happened. And then it was too late to go back. Too late to yell stop. Too late to scoop you up and run away into the sunset and pretend like none of this actually happened.

My heart is doing that thing again. Those offbeat palpitations, fluttering. A mix of stress and too much caffeine, I suppose. I still feel sick as a dog. But I’m glad you’re sleeping.

The eye has passed. And, while we are hopeful that the wind will be kind to us, we are still prepared for the storm. At least in my mind, we are. We are fortified, braced for impact.

Unfortunately, my heart tells a different story. And sings a much sadder song.

I’ll love you forever. I’ll like you for always. As long as I’m living, my baby you’ll be.

Mom

October 14, 2018

Dear Supporters, Friends, and Family,

“I felt like I was always holding my breath,” she said. The cancer mom friend I’d made. We stayed in rooms right next to each other on the hospital pediatric cancer floor.

And you are. That’s exactly how it feels. All the time. I’m not sure when we, as cancer parents, are supposed to come up for air, but you definitely hold your breath. If you’ve ever had any experience swimming or playing a lot in the water, you may remember that feeling of being under too long.

Your muscles start to burn. Your lungs start to burn. Your head starts to hurt. Panic seeps in if you find you’re not close enough to the top to get air fast. Some of you will know. You’ll remember that feeling.

That’s what it’s like. Every day.

I’m always waiting for the ball to drop. For the next side effect. For the next complication. For the next bit of bad news. Always asking the next question. Advocating. Pushing. Always holding my breath. Always on call. Always making a call or always waiting for a call.

There is no rest.

Sometimes I wonder if I’ll ever breathe again. Like, truly breathe. I’m sure one day I will. But right now, my lungs are hurting. My muscles are tired. My head hurts.

Maybe I’ll become a mermaid. Or drown. Hopelessly underwater, sinking... sometimes pushing frantically towards the light where there’s air, but mostly either sinking or floating somewhere between the top and the bottom. I love the water. So hopefully I’ll become a mermaid. Because, at the end of the day, when darkness falls, and it’s still and quiet and all of you amazing people are resting, I’m still holding my breath.

And one day, I’d really, really like to breathe.

Love,

Me

October 27, 2018

“It’ll always be there now, forever,” she said. “But it won’t always be this…intense.”

Our social worker is the sweetest. I asked her if it’s always going to be like this. Feel like this. Even after treatment. Even before treatment is over.

Intense is a good word, I guess. As good a word as any. That’s what it’s like. All the time. Every single second of every single day is intense. Stressful. Emotional.

I don’t know what to compare it to for people who haven’t been through it. Primarily because there really is nothing. Maybe the most intense, under-pressure experience you’ve ever had in your whole life. Times a thousand….maybe more.

It’s hard to enjoy being home. I’m happy. But it’s still intense. I don’t get the luxury of coming home and compartmentalizing my time at the hospital or taking a break. Even when I’m taking a break, I’m not.

At home, she still needs me. I still have to stay on top of her care 24/7. At home, I have two other children who need my love and attention, two other people who are starving for affection that I so often seem to simply not have the energy or emotion to give. I have one grown person who, while understanding, is still deserving of my time and attention. But I more often than not just. can’t.

I’m barely even functioning on the most basic level most days. There’s never enough time to recover mentally, emotionally, or physically from the last mentally, emotionally, and physically draining event.

Because every day is a draining event. And, somehow, I’m still caught off guard every day. By that word “intense”. By that word cancer.

I have to say, radiation was a cakewalk compared to chemo. I obviously didn’t know that then. But it was. This is much, much worse. Much isn’t a good word, but it’s the only one I have right now. The constant pain. Bone pain, head pain, stomach pain, everywhere pain. She’s always in pain. Or throwing up. Or sleeping.

And procedure after procedure after procedure. Needles, meds, beeping, tests, blood transfusions. It becomes routine. I just swallow my emotions and move on. There’s simply no other choice. But when I try to see it from the outside, I’m horrified.

I wonder if parents of chronically ill children ever look at it from the outside and feel that way, too. I wonder if they ever have time to cry. I don’t.

The thing is, there are SO many parents out there doing a way better job at this than I am.

Working, going to school, single parents, parents with lots more children to care for, parents with little to no support, financially or otherwise. They’re still making it work. They’re still functioning.

I’m average at best. Not anything amazing or strong or brave. I’m a normal mom doing what any other mom (or parent) who loves her kid would do. That’s it. You wanna know if I’m ok. You wanna ask me how I’m doing. I may give you some watered-down version mixed with some cliché remark about if she’s doing well, I’m doing well, or we’re still alive, or some other form of that. I may even throw in a half-assed smile and stand up with some sort of semi-decent posture.

The truth is, you don’t really want to know how I’m doing. I promise.

She’s never ok. She’s mentally, emotionally, and physically scarred for life. In ways that no child should ever be. And it’ll never end for her. She’s the one who’s brave, strong, courageous, amazing.

And if you see any of those characteristics in me, maybe it’s not me at all. It’s her. Not the other way around.

Nothing is ever ok.

And me. Well, I’m hanging on by a thread…that’s burning at both ends. And honestly, it’s really, really intense.

If you haven’t read the previous parts of this story, you can find Chapter 1 here, Chapter 2 here, Chapter 3 here, and Chapter 3 Part 2 here.

If you or someone you know is a parent of a child who has or had cancer, I hope you know you’re not alone. Everything you’re feeling is valid. And, under no circumstances, should you apologize for it.

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If you haven’t read the previous parts of this story, you can find Chapter 1 here, Chapter 2 here, and Chapter 3 here. This is a continuation of Chapter 3. When the letters begin.

If you or someone you know is a parent of a child who has or had cancer, I hope you know you’re not alone. Everything you’re feeling is valid. And, under no circumstances, should you apologize for it.

June 30, 2018

Dear Warrior Princess,

I would love to tell you that I can take this burden from you. But I can’t. Physically, this burden is yours to carry, and yours alone. Your body has to run this race, and you have to push it to do so. But, mentally and emotionally, the burden is shared. Because I carry a burden too. While I have the luxury of sharing some of that burden with others, there are also parts that I can’t. Deep, dark parts that no other could take on. So it seems we are both in this place, burdened, carrying this tremendous weight.

When I’m pushing you to what I feel is the maximum you can take, when I’m not babying you but giving you tough love, when I’m yanking you up by your bootstraps, and you’re crying for me to not make you do whatever it is I’m making you do, be mad.

When you think you’ve reached your limit and I don’t, be mad. When you are violently throwing up over a toilet or trash can or bag or whatever we have available at the time, and you’re forced to be poked and prodded, and when I force you to take multiple medications for all kinds of things you’ve never experienced before, be mad. When your body is shaking from fatigue and muscle weakness, and I have to help you walk 10 feet to the bathroom, or when you can’t bathe yourself or feed yourself, please be mad.

When you lose your hair and beautiful double-layered eyelashes, your eyebrows, and you look in the mirror and don’t even recognize your own face. Just be mad. Be mad at me. Be mad at the world. Mad will make you stronger. It’ll help you fight. It’ll help you live.

And on this journey, this adventure, if, for some reason, your will to live stops exceeding your fears of death, your anger. If it stops surpassing the pain, the exhaustion deep down in your bones. That’s ok. I have enough will to live for both of us.

We’re going on this journey, whether you want to or not. I told you I would carry you the entire way if I must. And I still will. But the girl I knew is gone. And the girl you were is gone. And I would really like it if you could just be mad about that.

Love you forever,

Mom

July 18, 2018

Dear Warrior Princess,

I saw you the other day. For the first time in a long time. For a minute, I saw you.

It was the day you secretly told Grandma that you wanted your mom back, for me to be happy and laugh again, like I did before cancer. It makes sense to me now, all the times you’ve said you missed me when I’m right by your side.

So for just a minute, I imagined that your head was shaved because it was your preteen, almost-teen, way of expressing yourself. And we were here in Florida for a you and me vacation. Not stupid, life-saving radiation treatments.

We snuggled on the bed that night and laughed and picked on each other as we used to all the time forever ago.

And you were just Big Love. My Big Love.

But just like that, it was over. You got tired in a matter of seconds. The clouds covered your eyes, and really dark circles reappeared. Suddenly, you looked like the oldest of ladies, the tiniest. Moving in slow motion. Shaky and unstable on your feet. We lay on the bed that’s not yours. I rubbed my fingers gently down the back of your head along your scar. It was deep, still raised. Still fresh. And I remembered. We remembered.

It’s loud here in the city. All the time. A big city with hustle and bustle 24/7. So many people and noises and smells. It’s so freaking hot. If there is a hell, I don’t know how it could be hotter than here. And so, except for moments where I see you, brief moments, everything else oozes cancer and homesickness.

So, my Warrior Princess, it was so very nice to see you the other day. Nice to know that you’re at least still there. On a day when you needed to see me. And I needed to see you. We met up and had tea and a laugh, like long-lost friends. We should do that more often because I miss you like crazy. And you apparently miss me. Even when we are side by side. Even when we are holding hands.

It’s dark in my world without you. Without your light. We should definitely meet up again. You can have cake and ice cream because they’re your favorites, and we can make jokes and laugh like we used to forever ago. We can snuggle and talk about your future. And we can pretend for a moment that everything is ok. Whenever you decide to appear, I’ll see you then, sweet girl.

“Even though you are drowning in valleys of echoes,

I believe there is peace in those hills up ahead.

You will climb till you find places you’ll never let go.

And I’ll also be here praying just like I said.

I hurt too.”

• Katie Hertzig, ‘I Hurt Too’

Love,

Mom

July 30, 2018

Hey Warrior Princess,

I saw you again... this time for much longer! And I was reminded of what life was like a thousand years ago, before cancer. You came for brunch and stayed through dinner. You made jokes and laughed with the ocean. You whispered to her your secrets, your worries, and woes. She told you stories she remembers of a younger, even smaller you. Stories of freedom, of peace, of a simpler time. You smiled. She spoke in waves and smells and sounds and calmed your restless soul. Which calmed my restless soul.

Your birthday weekend was pretty amazing. Grandma came to visit. She made it less lonely. It was like old times. And you held my hand. We ate taffy and walked along cobblestones with Grandma and your sister. You made funny jokes, and we all laughed. We got to spend time forgetting and remembering... back when days were brighter and easier and light. And for a moment, I was maybe not quite so tired, so weary of this terrible place. Of this terrible situation. I’m really glad you came to visit. Even if it wasn’t to stay. One day, I think you’ll pop over and decide to stay forever. The you I remember from the Before.

Today, you talked of death and dying. You cried in my arms and begged me to take you home, even for a day. I told you if we did, we’d never come back. You begged me to make it all go away. And I told you I can’t. So we just sat there while you sobbed. In a place that isn’t home.

You told me I was brave for not crying. Except that I was. Silent tears masked by some stupid semblance of stoicism. And I told you you were brave because you were letting it all out. That you can’t hold your feelings in forever, and that fear wasn’t weak, but running away from it is. I told you that you are courageous and inspirational and amazing and beautiful. And perfect. You said you felt like a boulder had been lifted from your shoulders. But I feel like the weight of the world is on mine.

Grandma left last night. And once again, we were left remembering. We shaved your fuzzy little head because the radiation is making your scalp dry and itchy. You cried. You cried because you remembered. Over and over again, you remember. We remember. I put lotion on your perfect little head, and Grandma took the train. And then you went away for however long you decide to stay gone. But that’s ok. I got to see you...like you were before. And so did Grandma.

You stayed from brunch through dinner. You whispered to the ocean all your secrets. And your old soul met with hers once again. It was like the best present ever, you coming to visit. Next time, we’ll go to some new place, and we can still have taffy or ice cream or whatever you like.

Maybe you’ll laugh like you did some moments and forever ago. And maybe you’ll stay.

Until then and forever, all my love,

Mom

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I was, at the very most, a B friend. They may have been my best friend, my only friend, but I certainly wasn’t theirs. What a stupid thing to even consider…that they’d want to be best friends with me.

The girl with the beautiful face.

From kindergarten through high school graduation, I can count on one hand how many friends I had. In total. Most of them were only there for a season or so.

I really didn’t make it easy for people to like me. Not on purpose. But I guess not not on purpose either.

From the time I entered school, kindergarten, I remember feeling different from other kids. I don’t remember it being because of my body though. That didn’t come until maybe third grade. I always felt not as smart, not as cool, definitely not as rich, not as popular, pretty, loved, liked. Not enough.

But no matter what, I had a “beautiful face.”

Everyone said so. Well, all the adults anyway. The teachers giving me pep talks, my sweet, adoring, well-intentioned grandma, my pastor’s wife. And later, even guys on occasion. Thankfully, I don’t ever remember my mom or dad saying it.

When I was in 4th grade I developed boobs before almost anyone else and skipped the whole training bra phase all together. And, by then, I also had glasses. My thighs were thicker and chaffed during kickball. No one ever wanted to see saw with me.

I had a birthday party sometime around that age, just one that I can ever remember having. Only a few people showed up. And they were mean to me. So we never did that again. I was the kid who other kids’ parents made them invite to their party.

I’m not entirely sure why. Maybe I was a mean kid and just don’t remember? I don’t think so?

The kids in my neighborhood played with me. We all played together for many years until we became teenagers and somewhat went our separate ways. But they weren’t the kind of friends you’d tell your darkest secrets to. They were the friends you rode bikes with, played tag with, and built cool stuff with out of bits and pieces of trash or debris you found around the town. Stuff that never worked but was fun to build.

I don’t remember truly catching shit for being larger until middle school.

When I started wearing women’s sized clothing. Not the size small women’s sizes either. And definitely not the junior sizes like what seemed like ever other girl in the school wore. Most of my clothes came from Walmart or, occasionally Belk. Or my mom made them.

Good thing I still had a “beautiful face.”

Lotta good that did me. It didn’t save me from being called “Free Willy” in band class or “fat whore” in high school. It didn’t save me from embarrassment when I went shopping with the two (much smaller in size) kids who’d still hang out with me. It definitely didn’t save me from being taken advantage of by any guy who happened to glance my way. You know the ones. The boys who knew they could try and get something out of you because your confidence was below sea level and you’d likely take anything. They think you’ll put out. God knows how I managed to stay a virgin until I was 16. Of all the things I did with a pretty face, I can say I wasn’t, in fact, a “fat whore.” Not that anyone ever could be.

Mostly having a beautiful face didn’t keep me from doing really stupid stuff to try and be cool, to make up for the rest of my body being…not cool.

Turns out having a beautiful face did nothing for me except give me trauma, walls, and, eventually, a couple of decades later, a decent amount of good character.

I can’t think of one single time I’ve told either of my children they have a beautiful face. I just tell them they’re beautiful. Smart. Funny. Sassy. Kind. Ambitious, responsible, amazing humans, loving, hard-working, leaders, mentors, helpful.

All kinds of things.

Other people tell them those things too.

Not once have I told another human being that they have a “beautiful face.”

I still struggle with my body image. My weight. My health.

But hey. At least I still have a beautiful face.

ps. As I’ve reached midlife, I am still learning to love myself. My body doesn’t do all the things it used to do. Hell, sometimes it doesn’t do the things it’s supposed to do. Or it does more than what it should (Women who have given birth, iykyk). Some days it’s a bit extra. Others, it’s a bit extra useless. The point is, I’m embracing all of it. I’m still healing from the past. Maybe I always will be. And that’s ok.

If you’re feeling some kinda way about your body or have negative childhood experiences pertaining to your body image or insanely stupid societal norms placed on you (and your body), I’m here for you. Vent. Cry. Talk about it or don’t. Scream. Say bad words.

It’s all ok to do here.

Who gets it.

So, for those of you continuing on in the story of my daughter’s pediatric cancer story, this will effectively be Chapter 3. You can still find Chapter 1 here and Chapter 2 here.

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LIVING IN THE WAITING

I didn’t have much time to think about the choices I made at the beginning of the After. In one moment, our lives were normal. And the next, I was making life-or-death decisions about a tiny little creature that I wasn’t sure I had any business being a mother to to begin with.

Who was I to decide anything? She’s smarter and wiser and kinder and more patient than I ever could be. And somehow got stuck with a mother who couldn’t even comfort her after she got the news that her old self had died. A mother who had somehow managed to explain away every symptom of her cancer for months on end. A mother who yelled at her, not even weeks before she was diagnosed, for not being a team player at her final spring soccer tournament.

It was every bit of a hundred degrees the day of her soccer tournament.

But the decision was up to me. And it was probably good that I didn’t have time to think about it.

Surgery was scheduled for the next day simply because the pediatric neurosurgeon of choice, held, apparently, in high regard, was in surgery at the time. I never really stopped to ask a lot of questions about the man who would be tinkering around in my firstborn’s brain, but I trusted the facility. And there wasn’t a lot of time for second opinions.

I remember the 7+ hours of waiting for her to come out of surgery being particularly long. My mom was there with me while my other half stayed home to take care of our two other little people. Ultimately, he ran the show during Big Love’s diagnosis and treatment.

The PICU waiting room was empty except for my mom and me. I remember Avery crying out for me as they wheeled her back to surgery because I couldn’t go with her on that journey. It was one of the two very last times I ever heard her call me “mommy.”

And the first of many journeys I couldn’t go on with her…or for her.

I’ve since decided I am perfectly fine never being called “mommy” ever again.

When she came out of surgery in the wee hours of June 15, 2018, the Big Love I birthed, the one who quite literally made me the mom (and partially the human) I am today, was gone.

She’d asked the surgeon to go ahead and shave her still-perfect little head during surgery. Something he wasn’t in the habit of doing for little girls who loved their hair.

But Big Love said she’d rather get it over with now than watch it start to fall out in chunks later.

The hours following D-Day were long and packed to the brim with doctors, nurses, and a full-blown research study team. I signed a lot of papers. I talked to an army of people. My world was chaos. But theirs ran like a well-oiled machine. And, for that, I was very, very thankful.

That night after her surgery, or really early morning — both in my case — I decided I would never be blindsided again by cancer. I didn’t want anyone else to be either. And so I began my Letters From Hell. Letters like what you’ll read here. Some, written to whoever would listen.

But most...most are written to her.

Unlike many, I didn’t want to forget these moments. This time in the darkness. I want us to remember living in the waiting. In remembering, we can live life better. Plus, there was nothing else I could do to quell the unrelenting rage and utter heartbreak that plagued every single gasping breath I took but talk to her. Through words I hoped she’d actually never read.

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RADIATION: THE “EASIEST PART”

People say I should just be thankful she’s alive. And I am…but they need to shut up.

They told us radiation would be the easiest part. And I believed them. I believed that homesickness would be the worst part. Caring for a wheelchair-bound child who just two weeks prior had not one, but two brain surgeries.

It sounds ludicrous now, as I write this. That I was naive enough to believe that homesickness would be the worst thing we dealt with.

We knew we’d have to be away from home, in another state. And that she’d have a “special mask” for her daily treatments. They even decorated it for her. They did that for all the kids.

But they didn’t tell me the mask is used to essentially bolt her down on a table, where she’d have to stay completely still, face down, for 1-2 hours five days a week for six weeks. Unsedated.

They didn’t tell me that some days we’d be at the radiation clinic all day long because the younger children got to go first. They got sedation. And sometimes, it just took longer. Or that the machines would break down, and we’d have to wait.

The amazing facility staff helped. They really were sweet as pie. They had craft tables and a piano player. But that’s not exactly what a 13-year-old wants to do.

They didn’t tell us she’d be itchy and scaly all over her head and down her back. Or that she’d be so sick the whole time she could barely eat. Or that she’d be even more exhausted than she was before the tumor was even removed. They didn’t tell us I’d have to carry her places sometimes…in my arms. Alone. With a 10-year-old child in tow.

We definitely lived in the waiting during radiation. Waiting for treatment. Waiting for treatment to be over. Waiting to eat, drink, or leave. Waiting for company, for anyone to show up that could wait with us from the Ronald McDonald house where we stayed. Mostly, we just waited to go home.

Turns out, they lied. There is no “easiest part.”

It’s just various stages of hard. Forever.

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This week’s post was going to be Chapter 3 of my Letters From Hell nonfiction short story about my daughter’s cancer diagnosis and treatment. If you’d rather read about that, you can find Chapter 1 here and Chapter 2 here.

For some reason, late last night, I had a randomly strong inclination to tell you about Dee Dee.

Maybe it’s because the depression struggle has been so very real lately and I need to get it off my chest. But it doesn’t feel that way. It feels like someone needs to hear it. I can’t tell you why. Call it intuition, I guess.

I’ve struggled with major depressive disorder for many, many years, since I was in my teens. And through all manner of medications combined with sheer grit (and VERY supportive parents), I’ve somehow muddled through life staying above ground. Mostly due to the thought of someone else’s heartbreak, not my own. Someone else’s need for me to stay alive. And definitely not out of fear of dying.

I’m 45 now. Soon to be 46. And just recently learned that naming my depression like it’s another person helps me separate myself from it. I wish one of the many therapists I’ve seen over the years had told me this was helpful long ago.

Alas, it came from my oldest daughter. My neurodivergent brain cancer survivor with CPTSD and a number of other mental health issues. She’ll be 21 this year. But she’s way smarter than I’ll likely ever be.

Separating depression from myself helps me remind others they’re not alone. That if all they did was open their eyes today and keep breathing, it’s enough. Because it helps me understand that about myself, accept that about myself. Having Dee Dee allows me to show people all the faces of MDD, not just the cliche ones.

So let’s meet her, shall we?

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Meeting Dee Dee

I’m still learning who she is.

Some days she wants to stab my husband in the throat with a fork because his voice sounds like nails on a chalkboard.

Some days she tells me my kids aren’t worth sticking around for. She doesn’t care about their futures or lives, and she doesn’t want to see them graduate, get married, have kids, travel. Dee Dee doesn’t care about those things. I thought that meant I don’t care about those things. But that’s not true. Dee Dee is an idiot.

Dee Dee often romanticizes death. What it’s like. Or not like. Depending on the day. But I know that we can’t truly know anything about death. And it’s too great a risk to try it out.

She likes to snuggle. In the bed, for days. She hates showering and getting dressed and brushing her teeth. She definitely hates brushing her teeth. Dee Dee hates brushing her hair too. And on her particularly devious days, she likes to paralyze me completely.

My husband, bless him. You simply don’t understand the deep, dark depths of depression unless you’ve been there. On those paralyzing days? He wants to know what’s wrong.

Am I sick? Do I have a migraine again? Did I not sleep well? Is it stress?

No. No no no no no no no. It’s none of those things. It’s nothing. And everything.

Dee Dee’s pretty horrible. Atrocious.

Sometimes Dee Dee lets me live my life. We’ll coexist on those days when more things are going right than wrong. Days when people are kind, the weather is perfect. When outings are on the horizon and yummy food is involved. Days when I love my husband endlessly and completely and want him nothing but alive and by my side. My ride or die. My best friend.

But even on those days, she’s still there.

Normies

Sometimes I forget that this isn’t normal. Feeling this way. Living with Dee Dee. That other people just get up, meditate, drink coffee, exercise, do whatever they do and they’re happy living life. They have aspirations, things they want to do or accomplish.

I want none of that. I just want to survive until my life is appropriately over. And then Dee Dee will disappear. I think, anyway.

I don’t even know if I know what happiness is. Is it a moment in time? Is it a state of being? What does that feel like?

I feel gratitude. I’m grateful for my job, the people I work with, my house, my dogs, my kids, my husband, my yard and neighborhood. I’m grateful for hot water, running water, the wind, the seasons.

But happy? Joyful? I don’t know if I even remember those feelings.

Is it when my prickly teenage daughter gives me a hug? When my coffee tastes good? A particularly nice piece of writing that even one person notices?

What do I even want to do with my life? Am I supposed to have a purpose?

My youngest daughter is so passionate about what she wants to do she eats, sleeps, and breathes it. She does it exhausted, injured (sometimes). She does it in the midst of a lot of no’s (sprinkled with a few yes’s). She travels all over the country to do it. There’s nothing she wants to do more than that.

My mom was a teacher and she did that too. Endless nights and weekends, meetings, parents, troubled children. For 40 years she willingly dedicated her life to teaching.

Who even does that? Not me. And certainly not Dee Dee.

She’s not always in control, but she’s always there.

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What I’ve Learned

My therapist says that I need to tell more people about Dee Dee. People that can help.

I told her it feels embarrassing. Humiliating. Shameful.

The thing is (and I’m saying this while still struggling with the above emotions), the way it feels and the way it actually is are different.

Telling people that love you about a person in your life who’s giving you trouble or causing you pain opens up the door for them to help. So why would I not do that with Dee Dee?

So. I have a plan.

Each day, when my eyes open, I already know if Dee Dee is going to be so so, bad, or worse. I can just tell. If you suffer with depression, you’ll understand this completely.

So I give each day a number 0-10. Zero is a paralyzing day. Ten is when Dee Dee is essentially on vacation. With each number, I decide what kind of help I’ll need at that level.

For example, on days when I’m a zero and my depression and I are wallowing in dirty sheets, unbathed, unfed, uneverything-ed. I need help getting dressed. I need to just have food put in front of me. No decisions. No work. I need someone to hold my hand. No talking. Just be there.

On days when I’m, say, a five, I’m not cooking. I’m not doing chores around the house. I may not shower or brush my hair. But at least I’ll be up. Kind of functioning. I need to tell my people what I need on those days too.

You see, the point is, the people who love you don’t want to see you suffer. They actually want to help. I know, shocker. We just don’t want them to feel bad for us. No pity. Not offended. Not inconvenienced.

Dee Dee likes to run wild. Sometimes her voice gets louder the more empowered I feel.

What if they don’t want to help? What if they’re busy? I’m bringing them down. They’re better off without me. They don’t want to deal with a crazy person. They have a good life. Why would I ask them to help me? This isn’t a big deal. I’m not a big deal. Nobody will notice if I just stay in bed. No one will even care. They shouldn’t care because I’m such a downer. I just want my kids to live their lives, not worry about me. My partner deserves someone happy and fun. My family will get over it if I’m not around.

But you know what?

Fuck Dee Dee

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I’ve always associated it with negative things. But as I prepare my heart and mind for my youngest daughter to graduate from high school and move an 8 hour drive away to pursue her dreams, 'I’m wondering if it has to be like that.

Maybe not.

Struggling is too light of a word to describe how I’m handling this upcoming transition. My life will never be the same again. But for a good reason this time.

There’s still heartbreak in this After. But, substantially more so, there’s joy.

That’s not what this After is about, though. If you missed Chapter 1, you can find it here.

And if you’re a new subscriber and missed hearing what my Substack is all about and a little about who I am, I hope you’ll visit here!

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THE AFTER

I don’t know that I would ever breathe again if I lost either of my children. I know parents who have and still live on. In heartbreak and grief. Forever. But I was convinced, and still am, that I truly don’t think I’d be one of those parents who does. I’m not that strong. Not that capable. And, to this day, I feel very, very sure of that sentiment.

The living in the waiting began in that moment. Waiting for results. Waiting for surgeries, recoveries, doctors, nurses, exams, fevers, treatments, side effects. Waiting for life. Or death. We walked the tightrope of hope and hopelessness for what I am sure was centuries.

We didn’t have a choice. You never really do with cancer.

It was a long drive of about 15 miles and a million years to the ER. In wall-to-wall traffic on the interstate. My husband, Big Love’s step-dad, had driven the 30 miles to come pick us up because I told him I just couldn’t drive. So we drove… in silence. I wanted to comfort her. To say something encouraging. But I had nothing. So I sat in the shame and guilt of that the entire way. It was so effing hot that day. And I felt sick. That lurching feeling, like when you just know you’re going to throw up your toenails but never do.

When we finally arrived at the ER and met with the surgeon, I saw the images…

“It’s definitely brain cancer,” he said. “We just aren’t sure what kind yet.” Everything after that sounded like I was underwater. And I vaguely recall wanting to throw up even more. But I don’t think I ever did. I can’t quite remember now.

It was like some sort of movie. A drama, maybe. Or a based-on-a-true-story novel. I’m sure from the outside it was loud and hustle and bustle and paperwork. As emergency rooms typically are.

But on the inside, all the air had been sucked clean out. It was silent. A bubble. A vortex of eerie quiet that encapsulated our family in darkness. And I watched our world slip away quietly into the night from inside that bubble. In muffled-sounding, crumbly pieces.

I signed her life away for emergency brain surgery that same night. I sat horrified in our new bubble. Drowning in the pieces of our life.

And nothing was ever the same again.

We lost that day. Avery and I. And our family. I lost who she was and who she was destined to be. She lost herself and almost everything that went along with it. I still mourn that loss to this very day.

Our world before cancer. I’ve had to bury that world and that daughter many times over since then, but I still go visit the grave now and then. Bring flowers. And talk about the “Before”.

“Remember that time when….?” I’ll say. “That time before cancer.”

Those are hard days. I try not to visit too often.

Big Love didn’t know this at the time, and neither did we, but she wouldn’t leave that hospital again for another two weeks. As a matter of fact, it would soon become our home. One that we are now pretty fond of. Sometimes I wish I could’ve prepped her for that, but it turns out she doesn’t really remember much of it anyway.

Cancer forced us to join a club. A club that no parent wants to join, but one that is full of the most amazing people we’ve ever met. A club that loses members more often than the public would care to know.

The pediatric cancer club. It doesn’t have a formal title. But if we were going to have to fight a war, I couldn’t have asked for a better army.

On June 14, 2018, Big Love was officially diagnosed with stage 4 brain cancer called medulloblastoma. D-Day.

And so it began. The “After.”

I cried many tears that day. For what felt like the last time. Because when the tears stopped, I didn’t get the chance to cry again for a very, very long time.

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There’s only a few chapters of this short story. Each one will be delivered to your inbox over the next couple of weeks. If something I write resonates with you, leave a comment. Share your story. Tell me I’m wrong. Whatever. The point is connection, not performance.

And if you know someone else who might need this kind of honesty in their life, send them this way. We’re building a club here. It’s not the club any of us wanted to join, but the people in it? They’re my people.

Thanks for being here.

—Liz

Hey, amazing subscribers! Shall I call you friends? Too soon? We’ll get there. I don’t have but two friends. One is my husband. Maybe this is why. Too much, too soon. I’ll work on it.

Anyway, I got rejected twice (so far) from an online publication. It’s for this nonfiction short story. Maybe it’s not inspiring. Or too depressing. Or too real. Offensive. Human.

Maybe it just makes people too uncomfortable?

Or maybe it’s awful writing. I’m not sure, but I’m entirely open to feedback because, well, I kind of want to turn our cancer story into a book. So here’s the first chapter.

THE BEFORE

Her vomiting became more frequent. She had dark circles under her sweet 12-year-old Bambi eyes all the time. She quit doing any sort of activity that wasn’t absolutely required. She quit laughing her big, beautiful belly laugh. She quit doing a lot of things.

Then one day, she sneezed. And I saw it.

Big Love is my firstborn. I unexpectedly conceived her after deciding many years prior that I didn’t want children. I was simply not cut out. I was going to leave my small, cliquey town and move to the big city to be some big-time interior designer. No kids. Ever.

My mom got out a good ole mountain-bred Christian chuckle when I told her I was pregnant. Especially since Big Love’s father and I were so incredibly poor. “We’ll figure it out,” she said. “It’ll be ok.” My mom always has a way of saying things. Her words bring truth to my life.

My stoic grandfather solemnly, but not quietly, asked if I could take it back. On Christmas Day dinner of the conception year.

She was born 5 weeks early with a beautiful, perfectly shaped head, but mostly not alive. After a really rough pregnancy, she had the umbilical cord wrapped around her neck twice. We watched her heartbeat slow with each contraction. Until it stopped. Things got pretty hectic after that.

I’m pretty damn grateful she survived.

Big Love likes to say she loved me first since she was conceived and had an actual heartbeat before I even knew she existed. She’s always been quite smart. An old soul. If reincarnation is real, I’d swear she and I have lived multiple lives together. Except she’s maybe lived more.

We call the day she was diagnosed “D-Day.” And before D-Day I, by some miracle, managed to keep this little “baby Yoda” alive for nearly 13 years.

I knew Big Love’s head would hurt pretty badly when she threw up. But it stopped hurting after she was done. Throwing up isn’t fun. I knew my head would hurt when I threw up, too. It would hurt if I jumped too much or too hard. I’d get a migraine from working out too hard, getting too hot, or if it was about to rain. It didn’t take much. Still doesn’t.

But not when I sneezed.

Big Love clutched the back of her head. And screamed. The kind that makes your hair stand on end.

We went to the neurologist the next day. May of 2018. We saw the same woman we’d seen the fall before for migraines we thought might be hereditary or puberty or something other than what it wound up being.

We sat down in her office and explained all the symptoms. Every single thing that had been going on. The vomiting. The fatigue. The migraines. Big Love had even started walking funny, wasn’t eating, and slept like the dead. Not like a baby. Babies don’t wither away when they sleep.

The neurologist was 100% convinced it was puberty and reprimanded me for not doing as she had originally suggested when we came to see her 8 months prior. She had been prescribed abortive migraine treatment meds and vitamins.

She was the most condescending, unhelpful bitch I’d ever seen in a doctor. A scornful, shrew of a woman. And, to this day, I have not met one worse.

She refused any testing. I told her I wasn’t leaving that office until she approved an MRI. An MRI she should’ve approved 8 months earlier. She called security. We got treated like trash. And Big Love cried.

You see. Many specialists don’t want to approve big-ticket procedures for people like us. Poor people. People who work hard and always have, but still can’t seem to quite make ends meet without a little help. People on government assistance. And seeing as she probably considered me an uneducated, unproductive waste of space, taking advantage of the generosity of the good citizens of our great country, I reckon she felt like my daughter didn’t necessarily need a $5000 test like that. Because that practice most certainly wasn’t going to get their money back for it.

Turns out, it seemed that she’s never met a mama like me. College-educated. Scrappy. Poor. And always unwilling to accept the status quo. I also have a red belt in Taekwondo and a dad who taught me well how to defend myself…both physically and intellectually.

But I didn’t need any of those fightin’ skills that day. I just needed to stand my ground. Calm. Collected…educated.

“Fine,” she said. “I’ll give you your MRI. It’ll be clear, but I’ll send the referral.”

Great. I walked out, shaking, crying child in tow, and requested a new neurologist. It didn’t matter, though. We wouldn’t be setting foot back in that office ever again. For more reasons than just her.

Big Love slept most days leading up to D Day. She was barely able to even finish out the school year. I watched her slowly waste away from not eating. And the vomiting. Asleep, awake, eat a little, vomit, scream. Repeat.

I lost a lot of sleep those days in the Before. But not nearly as much as the After.

That wretched woman they called a neurologist didn’t even come over. She called. Like on the phone. From a big brick building, not 30 feet from the very one I was standing in.

“I’m so sorry,” she said. “Your daughter has a rather large brain tumor, and I’ll need you to head over to the ER right away. You’ll be speaking with the pediatric neurosurgeon. I’m actually very surprised. This was so unexpected….”

I didn’t really listen to her babbling after that. Actually, I don’t believe I responded at all. I handed the phone to the nurse while she was still talking.

When I look back on it now, it’s like I was standing outside of my body watching everything happen. Zero control. Everything felt fuzzy, like I might pass out. It felt numb. Slow. And silent.

I do remember crying. Only briefly. And then I remembered that I’m the mom. And there was no time for all of that then.

Subscribe now

There’s only a few chapters of this short story. Each one will be delivered to your inbox over the next couple of weeks. If something I write resonates with you, leave a comment. Share your story. Tell me I’m wrong. Whatever. The point is connection, not performance.

And if you know someone else who might need this kind of honesty in their life, send them this way. We’re building a club here. It’s not the club any of us wanted to join, but the people in it? They’re my people.

Thanks for being here.

—Liz

There are clubs you choose to join—book clubs, running clubs, the PTA if you’re feeling particularly masochistic. And then there are clubs that choose you. The kind where membership arrives without warning, usually via a phone call from a doctor or a moment when everything you thought was solid just... stops being solid.

Cancer parent. Domestic violence survivor. Anxiety and PTSD collector. I’m also excellent at finding every flaw imaginable about myself.

Don’t tell me flaws are beautiful. I know. I just don’t feel the beautiful part all that much.

If you’re reading this, you’re probably in one of these clubs too. Or you love someone who is. Either way, welcome. I’m glad you’re here, even though I’m sorry you have a reason to be.

Who I Am

I’m Liz. And I’m insanely…well, human. I was a paramedic before I became a writer, which means I’ve seen systems fail people and people fail people. I studied behavioral psychology because I wanted to understand why humans do what they do—which turned out to be useful training for surviving the absolute chaos that became my life.

I’ve been married twice. The first marriage taught me what narcissistic abuse looks like from the inside. The second one taught me what it’s like to navigate cancer as a couple (my daughter’s diagnosis, then my husband’s, then my dad’s). We raised three girls through poverty, medical crises, and every flavor of hard that life decided to serve us. I’ve battled major depression, PTSD, anxiety, and spent years hating my body.

Now, in my 40s, I care quite a bit less about that. But I still care.

If you’ve been through any version of hard, you know how exhausting it is when people treat your life like inspiration porn or act like your suffering has some beautiful hidden purpose.

And sometimes, it doesn’t. Sometimes shit is just shit.

Side note: I’m a plant mom (somehow keeping them AND my kids alive…bonus), dog mom x2, and I’ll talk to you about either of those things until you tell me to stop. Or until you walk away. Whichever comes first depends on how socially “appropriate” you feel like being at the time. I don’t mind either way.

Beau (age 2) and Gracey (age 9)…aren’t they the sweetest?

What This Is

Once or twice a week, I write personal essays and notes about the things no one is supposed to talk about at dinner parties and barbeques. Trauma. Cancer. Poverty. Mental health. Why we stay in situations we know are bad. Why toxic positivity is just emotional gaslighting. What it actually feels like to be a cancer parent. Not the sanitized Hallmark version, the real one.

I use dark humor because sometimes laughing is the only way to survive it. I use behavioral psychology because understanding why we do the fucked-up things we do makes them feel less like personal failures and more like we’re... human.

I don’t have all the answers. I’m not a therapist. I’m not a life coach. I’m not here to tell you everything happens for a reason or that you’re stronger than you think or any of that other bullshit people say when they don’t know what else to say.

What I am here to do is tell the truth about what hard things actually feel like from the inside. So people going through it feel less alone. So people not going through it learn how to show up better. So we can all stop pretending we have to perform okay-ness when we’re barely holding it together.

Who This Is For

This is for you if:

• You’ve been through some version of hard and you’re tired of people telling you to “stay positive”

• You love someone going through something terrible and you don’t know how to help

• You want to understand human behavior—not the academic version, the real version that explains why people make choices that look irrational from the outside

• You appreciate dark humor as a survival mechanism

• You’re allergic to inspirational quotes and prefer people who’ve actually been in the shit

This is not for you if:

• You think everything happens for a reason

• You’re looking for someone to tell you your suffering is beautiful

• You want five easy steps to heal your trauma

• You get uncomfortable when people say “fuck”

(Disclaimer: All are welcome here without judgement. I just want to make sure you know what you’re getting when you subscribe. 😊)

What Happens Next

I'll publish here. Usually a mix of personal essays, letters (I like that format), and blog-type pieces. Sometimes it'll be about cancer. Sometimes mental health. Sometimes poverty (I’ve got some stories). Sometimes abusive relationships. Sometimes just observations about why humans are weird.

You can subscribe for free and get everything in your inbox. Eventually, I’ll offer a paid option for folks who want to support this work and get some bonus content. But for now, we’re just building a community of people who prefer truth over platitudes.

I’ll also be posting shorter thoughts and observations in Substack Notes throughout the week—quick hits of dark humor, psychology nuggets, and probably some rage about toxic positivity.

If something I write resonates with you, leave a comment. Share your story. Tell me I’m wrong. Whatever. The point is connection, not performance.

And if you know someone else who might need this kind of honesty in their life, send them this way. We’re building a club here. It’s not the club any of us wanted to join, but the people in it? They’re my people.

Thanks for being here.

—Liz

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