And there’s a part of me fighting me on it

Life has settled out considerably in recent years, into a quiet desert life that is sometimes hard to trust.

I’m living in an awesome house with beautiful views and more space than we know what to do with.

Nadia and River are with me, relatively healthy, smiling most days, and expanding in their lives in their own ways.

I’ve had the same 9-6 job for almost three years. A record for me, I think. I still even enjoy it on most days, and like who I work with and for.

It’s rarely difficult to afford rent anymore. Or groceries, transportation, healthcare, water, electricity, air conditioning, internet… even streaming services!

I still remember when I didn’t have each of these current blessings. Including the daughters.

When life gets too busy or stressful and I need to remember gratitude, I go for a walk. Out in the desert elements, without trying, I can viscerally remember when I was living at one with them, just me and my minivan.

After such a walk, coming home to the safety and comfort I’ve created and been blessed with, the tears are inevitable. Even my toilet makes me cry sometimes.

My path has made gratitude easy.

Hope, on the other hand, has been a bit more elusive.

Walking River through her cancer journey showed me some pretty dark things about the medical money machine. And left us all with PTSD.

Supporting both my neurodivergent kids through their schooling gave me firsthand experience of how incredibly hard our current approach to education is on kids, parents, and teachers alike.

Going through family court woke me up to the abuse-sanctioning nightmare that’s really going on there.

Losing my home and living in vehicles without indoor plumbing for a year relieved me of any delusions that we live in a society that cares. (Pun intended, tee hee)

Guiding Nadia through a life-saving gender transition let me see with fresh eyes the incredible cruelty that trans and other non-conforming people experience in this society.

Discovering how many people in my communities were not willing to wear a mask or cast a vote to keep kids like mine alive was heartbreaking.

The fact that many of those same people were the ones posting encouraging comments when I shared about our struggles… brought a special kind of dysphoria.

Losing a beloved partnership that I believed in because he couldn’t be honest or faithful shook my belief in love. And in my own knowing.

There’s a part of me now that thinks that hope is actually kind of delusional.

Maybe it’s even entitled thinking to hope for “the good life” when so many are still in crisis.

My girls and I are housed and safe. We are mostly free, relatively content, and fully surrounded by luxuries we used to wish for.

How could I ask for more than that?

Sure, I’m pretty burned out on the job and on the caretaker phase of motherhood (it’s been a doozy!).

And our lease on this house runs out in a few months, when the owner plans to move in.

And I seem to have sort of forgotten how to relax. Or laugh.

But still…. we are undeniably blessed.

There are still people in hospitals, in family court, in Airbnbs and cars. Parents grieving, lovers betrayed, friends lost to MAGA or MAHA in worse scenarios than what I have experienced. Shit, there are people living through genocide.

So how can I dare to hope for better than all that I have now?

Seems much wiser to keep my nose down and focus on being grateful for what we have.

Just push through the burnout and the callings.

This might be as good as it gets.

That’s only part of me though.

There is another part of me that never runs out of hope.

Who can look at everything we’ve gone through as a miraculous series of blessings and guidance.

As though all these tribulations are just a juicy origin story to a Heroine’s Journey that’s barely begun.

And who knows, maybe she’s right.

Maybe things are going to keep getting better.

Maybe good things just happen sometimes, whether we “deserve” them or not.

Just like bad things.

Both of my girls are working a bit now. Creating art, building friendships, and getting excited about futures that don’t revolve around me.

We got an invitation to move into another house after this one, a quirky place with lots of character that we can make our own.

My writing is finally starting to flow after many years of feeling blocked.

I am once again getting invited to speak about Human Design and other things I’m passionate about.

And I met someone recently.

Someone who feels different.

Almost nothing has happened yet. We keep crossing paths and discovering more ways that our lives are intertwined, but we’ve only had a few breif conversations so far.

It’s way too soon to know if we’re compatible. If we want the same things. Or if he even sees me that way.

And yet, someone in me feels sure. Sure that there is something here. That this person is going to be important to me.

Even as I try to stay rational, she is noticing the resonance and wants to leap ahead.

My friends would probably call her the “Girl Who Cried Soulmate”

To that girl, I wrote this in my journal:

Hi sweetheart.

I see you.

The one who still believes he’s out there.

I love you so much.

You are the best part of me. The part that makes getting up worth it every day.

You breathe love into every day of my life, with or without him or anyone.

The girls, the cats, the house, the firm, your friends, your clients, your partners and crushes.

You drench everything in love.

You love big enough to rise to the challenges of being mom to a cancer kid and a trans daughter.

And to fight for them through burnout and trauma.

You love big enough to care for the dark ones until they choose to aim their darkness at you.

You’re not silly or foolish or gullible or wrong.

You are the highest and truest knowing of my soul.

Love is the priority, the point, and the answer.

And a partnership based on higher love is a force of light more powerful than the individuals who create it.

That’s a true calling.

We’re not late or early.

Just like we have always been writing, we have always been loving.

The cynic is here to protect and support us. She means well.

She’s learned a lot about boundaries and discernment.

And she’s also heavily conditioned by fear and patriarchy.

Don’t let her drive.

Keep the hope, the patience, and the openness to call in a true partner, at last.

But you don’t need me to remind you of that, do you?

Your hope is indomitable.

So I am on this ride with her again.

Will it be another unrequited crush that turns into warm friendship? I would take that.

But she says no.

Quietly but resolutely, she keeps whispering to me,

“No. This time is different.”

Sometimes motherhood means walking your child into the lion’s den – and letting her lead the way

“I just want to make sure you’re really sure. Once we bleach it, there’s no going back.” I warned.

She lifted her head, grabbed my hand, looked me square in the eyes and said:

“Mom, I’m SURE. Please stop asking because it’s making me feel less sure.”

So I bit my tongue and pinched my lips shut and went back to the task at hand.

My 14-yr-old was sitting on a tall stool out in the side yard, with an old sheet wrapped around her, and we were getting ready to dye her hair a vibrant hot pink. I’d gotten the tip on hair dye from a girl at the teen rehab center where I worked.

Although she’d been living as herself for 18 months by then, many people still spelled Nadia’s name backwards and used male pronouns for her. Including her Dad.

This did not make her feel any less sure of who she is.

Four days later was her first day of high school. At his insistence, she was returning to the district her Dad lived in, in a pricey, conservative area. She had dramatically fled the middle school down the street two years before, where the dress code was so strict that she kept getting detention for having her shirt untucked.

Now she was returning, post transition.

I woke up extra early that morning to make sure I was in a good space to support her. I coaxed her out of bed with calm energy and into the shower with plenty of time to spare. I made her a high-protein breakfast and packed her a big lunch.

It’s not about me, I reminded myself while she got dressed. Don’t add to the stress. Don’t ask too many questions. Just be there for her.

It’s impossible for me to imagine what it’s like to be a 14-yr-old trans girl, on her first day of high school, going back to the kids she went to elementary school and started middle school with, showing them her true self for the first time via hot pink hair and a cute top. Since she was not connected to them on social media, the big circle of guys she’d hung around with had basically no idea where she had gone when she left middle school, and had no glimpses of who she’d grown into.

As we were pulling into the drop-off line near the school, I winced at the sight of the school’s mascot smiling larger than life from the side of the gym. A Comanche Indian. In 2019.

My stomach turned.

I snuck a glance at my brave girl in the seat next to me. Her expression was hard to read.

“How’re you feeling?” I ventured, trying to keep my voice light.

“Excited!” she declared, with considerably more life force than I’d been expecting.

I looked over at her again, slightly aghast.

Surely she knew we were back in conservative Anaheim Hills.

Surely she knew how cruel kids could be at this age.

Surely I wasn’t sending her into the lion’s den, naively thinking they were going to welcome her with open arms.

Right!?

“You’re excited!?” I repeated, trying to stay curious.

She looked at me with the same certainty she’d had in the side yard.

“Yes! It’s a rare opportunity to be able to just show up as my true self and challenge so many people’s ignorance.”

Her confidence reminded me of who I was dealing with. Who I have always been raising. A light warrior with a capital W. An activist from birth.

She resisted authority before she could talk – literally. At 13 months, she’d only sign “please” or “I’m sorry” if she wasn’t reminded to.

Throughout her childhood, she would choose any consequence over submitting when she thought something was unfair. (It’s not like she forgot about the tuck-your-shirt-in rule.)

She’s grown into a master of words and wit and irony. Her Dad’s verbal abuse gave her a skin thick enough to be ready for anything these poor little rich kids could throw at her.

I saw that glint in her eye, and suddenly my nervousness shifted – from her to anyone who dared to challenge her truth. And the teachers who had to mediate it. And the administrators who would inevitably get involved. And her Dad when he showed up and saw her hot pink hair.

I hope they’re ready for her, I thought as I watched her skip off into the school, excited to shake some paradigms.

Since those days, there have been many times when I have struggled on my own path.

Times when I felt pressured by the people or the society around me to be more “normal”, more neurotypical, more driven, or more serious.

Sometimes I still spend several days locked in that same mental battle between resonance and “should”.

And then, inevitably, the passionate pink-haired girl from that day will walk through my mind and remind me that if my 14-year-old trans daughter can find the courage to live her authentic life and not apologize for it, then so can I.

I have a lot of stories about the incredible journey of being Nadia’s mother, but this is the foundation of all of them.

Nadia shows me, over and over, that the truest path doesn’t always look safe from the outside. It just feels right on the inside. And that it’s always a rare opportunity when you get to change the world just by showing up as your true self.

There’s a fine line between toxic positivity and joyous alignment. My barely verbal cancer kid showed me how to walk it.

Recently, while buying a lottery ticket, I remembered reading that big jackpot winners often report lower levels of happiness five years out.

Meanwhile, I have heard story after story about people who receive a terminal or life threatening diagnosis and end up calling it the best thing that ever happened to them.

It made me wonder… Do we actually know what we want? What would truly lead us to happier lives?

This took me back to a memory from about six weeks after River’s original diagnosis. She had been on chemo for over a month and we had just gotten out of the hospital a few days before. River still wasn’t walking.

She was 17 months old and had started walking at 11 months, but had stopped about a week before her diagnosis. They told me that there was pressure on her hip joint from the impacted bone marrow, crowded with rapidly multiplying blast cells, and that this was making her unwilling to bear weight on her hip without support. It had now been eight weeks since she’d taken a step on her own.

She was standing at the coffee table, playing with her latest “Spencer’s Treasures” toys (the box of donated fast food toys that the hospital kids get to choose a prize from after each procedure).

I was across the room, sitting crosslegged in front of the fireplace, going through the mail that had accumulated in our absence. There was a package from an organization my mom had found that sent free resources to families of pediatric cancer patients.

I started flipping through a book called Faces of Hope. There were full photo spreads on every page – picture after picture of smiling bald kids surrounded by their smiling families. One page had a quote pasted across it that said “Cancer was the best thing that ever happened to us”

Instantly, I felt enraged. How dare these people try to invalidate my agony with toxic positivity. “The best thing that ever happened to you!? Why would you even SAY that!!?”

Then I burst into tears, realizing that very soon, my sweet beautiful baby would look bald and sick like these kids. How could this be happening to us!!?

For several moments the desperation took me again, like it had many times in the past two months. Waves of grief, fear, and terror – a level of darkness, depression, and despair that I did not know how to survive.

Then, through my sobs, I heard a tiny voice from across the room.

“Mama cry?” she asked. She had stopped playing and was standing at the edge of the coffee table, looking at me with wide, concerned eyes.

“Mama cry?” she asked again, cocking her head at an angle, confused by my big emotions.

Then, without any hesitation, she released the coffee table, confidently toddled the 15 or 20 steps to reach me by the fireplace, flung her little arms around my neck, and whispered “Mama Cry. Hug.” And squeezed me tight.

For a moment, everything in me broke with every possible human emotion.

And then, deep inside me, something roared to life.

“Oh FUCK NO!!”

“We are NOT going through this nightmare with this tiny cancer-ridden being feeling like she has to be the one to comfort ME. I don’t know how we’re going to get through this but it’s NOT going to be like this.”

I swooped up my little miracle, hugged her back, and let only the salve of her love and the relief in her long-awaited steps reach my heart. Suddenly the tears were gone. Without repression. Without dissociation.

I was just in that moment with her. Alive, walking, and loving.

And from that day on, I did my best to show up for each day through the cancer journey with at least as much joy and optimism as River.

Not because I had to. Not by masking. But by choosing to stay present with her. My precious, not-even-yet-two-year-old, who had no idea we were in crisis.

Months later, when she had more words, she would sometimes ask me questions that started with “Mommy, when you were little and you were going through cancer did you….”

For so long she had no idea that what she was living through was extraordinary. She had no voice in her mind saying “Why!? How could this be happening to us!!?”

So she just lived her life.

She still threw up from the chemo and screamed through the needles and was terrified of the sleepy meds.

But after each difficult procedure or hard day, she’d be ready for the next new moment.

OK, now what? Is it time to order room service? Can we watch Winnie the Pooh again? Should I bring my stuffed bunnies to show the nurses this time? Are the pet therapy dogs coming today? All asked with all the clarity and confidence she could pack into her adorable one-to-two sentences.

And so that’s what we did. Chemo and then cartoons. Sleepy meds and then Spencer’s Treasures. Lumbar punctures and then movie nights with chocolate and popcorn.

I still took time to cry and scream into the void when I needed to. And then I came back to the next new moment with her.

When you’re one and a half you can just live the life in front of you and naturally find the joy in it. My tiny light bringer taught me how to choose joy again at any age. Without toxic positivity. Without denial. Without bypassing.

Maybe cancer isn’t the best thing that ever happened to me, but it was definitely the doorway to a lot of the best things.

And honestly, I do think it did more for me than winning millions would have.

But here I am, still buying lottery tickets and postponing my mammogram.

One unexpected piece of advice that became a lifeline through my darkest times

Eight months into my six-year-old daughter’s second 2.5-year course of chemo and radiation to treat her leukemia, I was burned out beyond description, and I was unraveling. My nights were a storm of restless what ifs.

“Am I doing this right? Am I doing enough?”

“Should I ask them to delay the next round of chemo until she’s feeling better?”

“Are they really considering the person at the heart of these brutal protocols?”

“Shouldn’t we be exploring alternative and Eastern medicine too? Maybe not instead of all the poison, but at least to support her through it!?”

“Are they hitting it hard enough this time? Is it going to come back again!?”

“What about Nadia? Why is she crying every day at school? How do I convince her that River is probably going to be ok?”

“How do I convince myself??”

“What will we do if she’s not……”

When I was finally able to carve out the time and money to meet with my teacher again, I was pouring these questions out in fast succession into the space between us before I had even taken my seat on the couch across from her.

I had to talk fast because I knew what she was going to say as soon as I paused long enough to let her speak.

“Breathe.”

Oh for fuck’s sake. My kid has cancer!! AGAIN!!!

I didn’t say it but she could see it on my face.

These are important questions. I need clarity on every single one right now. And by the way I AM FUCKING BREATHING!!!

“I know. I know” she said calmly. “Ok. Now, BREATHE. Just for a moment.”

“Okay. Fine” I say out loud.

And then silently, to myself “Shut up and listen Allyson, this is why you came here today.”

I bit my tongue hard enough to wonder if there was blood, and I did the thing I was already doing while I tried to listen to her speak, even though her slow and peaceful voice was utterly infuriating.

“You’re doing great,” she said.

I tried not to roll my eyes.

“There is nothing you need to fix or figure out. Just remember to decorate the hospital room.”

She said it as if it was clearly the answer to every question keeping me up at night.

“I’m sorry, what!?” I blurt, not really trying to mask my irritation anymore.

“Decorate the hospital room. In every way you can think of.”

“And how is that going to help, exactly!?”

It sounded incredibly trite. My mind immediately started wandering to all the other, more productive things I could have been doing with that precious hour, until I finally let the breath lead me back into peace with my circumstances.

I don’t remember much else from that session but those four words played through my mind on repeat for a while after that. Decorate the Hospital Room.

And so we did.

When it was time to go back to the hospital each time, we loaded the minivan to the gills. Our own pillows and sheets and favorite blankets. Stuffed animals. Soft towels and our own soaps! (IYKYK). Pictures from happy days with friends and family. Our favorite books, CDs, and movies. Puzzles and games. Wall posters of Elsa and Anna. Mini lights aplenty. Get well cards. Electric candles. Window clings. Sun catchers. Shiny curly cues to hang from the ceiling. Holiday decorations for whatever was next, no matter how minor.

Whether it was for three nights or thirty, we did it up, every time.

Gradually, I started to see that this was more than just a distraction. It was kind of the answer to the frantic “what ifs.” Not with logic – but with presence and perspective.

It gave us something to focus on where we actually had agency. When I needed to DO something to make things better, honestly, hanging sun catchers in the window did way more good than poring over the cancer blogs ever did.

And people treated us differently. Nurses and Child Life staff lit up when they walked in. Other kids were excited to visit us. The music therapist and animal therapy handlers always remembered which bald child River was by her room. And they always had something to talk to her about. Something other than her treatment.

It gave River a reason to enjoy her days. She literally got excited each time we had to go back for inpatient treatment. Choosing what to take, what to show the nurses and the other kids this time.

They’d see River cruising down the hallway, riding her IV pole like a parade float while I pushed – the hooks dripping with sparkly decorations, jangling with keychains and Beads of Courage, the fluid bag wrapped in a feather boa. She’d be grinning in her favorite “Life is Good” shirt, excited to see everyone, and the staff would cheer as she rolled in.

The children’s hospital even had their video crew visit us and used the clip they shot in a commercial!

One day we were pacing the hallway for exercise, walking by one nearly identical room after another – grey and clinical. River waved to each kid we passed and as we were coming back around to her room, she tugged on my sweater, pulling me down to her level.

“Hey Mom, you know what?” she whispered conspiratorially “A lot of people think cancer has to be really sad. But we found out how to make it fun!”

Turns out sometimes trite can be transformational.

After a while, Decorate the Hospital Room became a mantra for me.

When we were back home again, I would eventually find myself starting to lose sleep over the tiny apartment, the bills, and how the hell to get Nadia to understand that, in the eyes of her teachers, having a sister with cancer couldn’t be a five-year excuse to refuse homework.

Then I would hear the words again. Decorate the Hospital Room.

It wasn’t instead of. I still had to figure out where to keep the medical supplies in an apartment with no closets; still had to pay the bills or deal with what happened when I didn’t; still had to meet with the teachers when Nadia continued to accept her education only in the way that worked for her (which did NOT, btw, include homework).

And I also finally hung up the stained glass panels that had been waiting in boxes for two years. And creatively re-arranged the furniture in that tiny apartment to give each of us our own semi-private space even though we didn’t have our own rooms. And went to the farmer’s market and got a bunch of houseplants. And kept warm blankets in the car for the long drives to the clinic on cold mornings.

I gradually developed the practice of tuning into the spaces I was creating for myself and my daughters, no matter the circumstances. I looked for ways to lift the vibe. Aesthetically. Emotionally. Spiritually.

In the crazy years that followed, this practice became a lifeline. Through River’s return to school and normal life, my own PTSD journey, Nadia’s gender transition, our family court nightmare, the separation from my children, the discovery that my “soulmate” was cheating on me via hookup apps, that year of living in my car, and then getting stranded on a hippy compound watching in horror as the people there descended into the madness of QAnon…. It would have been easy to break under it all. And sometimes I did. And then, I would start decorating the hospital room again.

No matter where I am, no matter how bad things get, I can always make choices, big or small, that help me increase the relief, comfort, or pleasure of the moment.

I can help Nadia dye her hair hot pink so that she can show everyone at her high school (and her dad!) that she knows who she is and isn’t asking their permission to exist as herself.

I can hang that sun catcher from my rearview mirror so that I wake up to rainbows first thing, before I even have to worry about trying to find a place to shower that day.

I can share my crazy QAnon compound stories through Substack posts and might get to touch and entertain others.

The words come back to me again and again when I need them. They almost became the title of my site.

Decorate the Hospital Room.