Tag: Disability Awareness

Insights on the everyday experiences of individuals with disabilities, including the nuances of accepting or declining help.

Why Can’t Pants Just Fit?

Let me set the scene. I am in the bathroom, getting ready to do what one does in the bathroom, and I go to pull down my pants. Except I don’t really pull them down. They just slide. Right off my hips, no effort required, like they were waiting for an excuse.

My first thought was that I had grabbed a pair that were too big. It happens. I lost a significant amount of weight a few years ago and had to size down, and some of my older pairs are still floating around in the rotation. But no. I checked. Same size as my newer pairs.

Which brings me to a question I have been asking for years: why can’t a size just be a size?

Here is the thing about my wardrobe

Most of my clothes come from the boys department.

My shirts and pants, mostly from Target. My underwear, from JCPenney. A few adult shirts here and there, but adult sizing tends to run big and boxy, or long in the body and the leg, and none of that works great when you spend your day in a wheelchair. Boys sizing fits my body better, and there are real reasons for that.

I am not especially tall, and I have a slim waist. My hips are another story: cerebral palsy has affected my hip joints over the years, and that has shaped my proportions in ways that make standard adult sizing a poor match. I also prefer shirts that hit just below the waist or near the hips, which makes dressing easier day to day. Adult cuts tend to be too long, too wide through the chest, or both. Boys sizing, more often than not, actually fits.

I want to be clear about something, because I know where some people’s minds go when they hear that. Shopping in the boys department does not make me childish. It does not make me immature. It means I found clothing that fits my body, which is the entire point of clothing.

Most of what I wear, you would never clock as coming from the boys section. A plain tee is a plain tee. A pair of jeans is a pair of jeans. Do I have a few shirts with something a little more fun on them? Sure. But the majority of my wardrobe could pass in either direction without anyone batting an eye.

I am just a person wearing clothes that fit. Novel concept.

So about that sizing problem

Here is where it gets frustrating. Boys sizing runs differently than adult sizing, and I have made my peace with navigating both. What I have not made my peace with is that boys sizing is not even consistent with itself.

A boys size 18 is a youth size, not an adult one. But that number does not mean the same thing from one brand to the next. I actually keep a reference chart just to keep track, not because I enjoy doing extra homework before buying a pair of pants, but because the numbers mean so little on their own that I genuinely need it. A boys size 18 at Target fits differently than a boys size 18 at JCPenney. Same number, two different brands, two different fits. And that is before you factor in that sizing can shift within the same brand from one year to the next.

The number on the tag is not a measurement. It is a suggestion. A rough estimate. A vibe.

If I buy a size, that number should reflect an actual measurement. The same measurement, every brand, every year. The fact that it does not is not just inconvenient. For a lot of people, it means clothes that do not fit, returns that are a hassle, and a shopping experience that already takes more effort than it should.

And it is not just pants

For a long time, shoes were their own separate nightmare.

I wore AFOs for years. AFOs, or ankle-foot orthoses, are rigid braces that support the foot and ankle and are commonly used by people with conditions like cerebral palsy. They slip inside your shoe, which means your shoe has to be big enough to accommodate both your foot and the brace. My true foot size is a men’s 8. But for most of the years I wore AFOs, I was buying a men’s size 10 just to make them work. The last pair that actually fit over my braces were a pair of Doc Martens at a size 10. They did the job, but finding them was not easy, and shoe shopping was never simple.

I stopped wearing AFOs a few years ago. That is when I found out what size my feet actually are.

There is another wrinkle worth mentioning. Because of my cerebral palsy and the fact that I do not bear weight the way most people do, unless I am in the middle of a transfer, my feet do not sit flat. That makes it difficult to get an accurate measurement in the first place, which adds yet another layer to an already complicated process.

Eventually I found Billy Footwear, and things got a lot better. Billy’s designs shoes that zip open fully around the sides, making them genuinely easier to put on for people with a wide range of mobility needs. For the first time, I was buying shoes in a size that actually reflected my feet, not my braces, not a workaround. I receive no compensation from Billy Footwear. I just think they are worth knowing about.

But the point is: I spent years buying shoes two sizes too big because the alternative was not having shoes that worked. That is not a sizing inconsistency problem in the same way pants are. That is a whole different failure of the system. And it is exhausting to navigate both at once.

For wheelchair users, the stakes are a little higher

Back to those pants sliding off my hips in the bathroom.

That moment was funny, in the way that a lot of disability moments are funny when you are not in the middle of a transfer. But it is also not nothing.

I cannot count the number of times I have been mid-transfer into my chair and had to stop and readjust because my pants had slid down. Transfers require focus and coordination. Having to pause and hike your pants back up in the middle of one is not just annoying. It is a real disruption, and depending on the situation, it can affect your safety and your dignity.

I could wear a belt every day. Sure. Except a belt is not just something I forgot to grab. It is time and energy, and when you are a wheelchair user who needs to get to the bathroom in a hurry, that time and energy is not always available. A belt between you and the bathroom can be the difference between making it and not making it. That is not a minor inconvenience. That is a real problem.

Here is the thing, though. Most of my pants, because they come from the boys department, are either pull-on or they fasten with snaps rather than the buttons and zippers you find on adult men’s pants. That actually works in my favor. Both Target and JCPenney carry adaptive clothing lines, and I have tried a few things from each. But for my needs, regular boys department basics do the job just as well, often with the same easy-access features that adaptive clothing is designed around, and without the premium price tag. The boys department accidentally solved a problem the adaptive clothing industry charges extra to address.

Which makes the sizing inconsistency even more frustrating. When you find a department that fits your body, fits your budget, and happens to have features that make your daily life easier, you want to be able to rely on it. A boys size 18 should mean the same thing every time. It does not. And that matters.

A size should be a size. Every brand. Every year. Every time. It is not a complicated request. It just, apparently, is not how the industry works.

And until it does, I will be in the boys department at Target, checking the tag on every pair of pants, and hoping for the best.

Does inconsistent clothing sizing affect how you shop? I would love to hear how other wheelchair users and disabled folks navigate this, whether it is keeping your own reference chart, finding brands that actually work, or something else entirely. Drop a comment below.

06/06/26
The Song You Didn’t Hear

There’s a particular kind of magic that lives inside the best songs. Not the kind you notice right away. The kind that waits.

A little while ago I came across a Facebook reel from Allison Hagendorf, a music journalist and host who spends a lot of her time doing exactly what that title suggests — digging into the stories behind the songs. Her reel was about “Closing Time” by Semisonic. I thought I knew that song. Turns out I didn’t know it at all.

The Song You Thought You Knew

You know “Closing Time” by Semisonic. Of course you do. It’s the song that played at the end of every school dance, every bar night, every moment where the lights came up and the night had to end. Last call for alcohol. Last call for your broken heart. It’s a song about a night being over.

Except it isn’t. Not really.

Dan Wilson, the songwriter, wrote it about the birth of his daughter. The bar isn’t a bar — it’s a womb. “Every new beginning comes from some other beginning’s end” isn’t about stumbling out into the night looking for a ride home. It’s about a life beginning. It’s about a door opening that can never be closed again.

Two truths, living in the same song. One obvious, one hidden — and both of them real.

Wilson is from Minnesota, by the way. One of ours. And I think there’s something very Minnesotan about the whole thing — putting something that vulnerable and that enormous into a song and just letting people think it’s about last call for twenty years.

The Meaning You Bring Yourself

But here’s the thing about songs holding two truths: sometimes the writer puts both of them there on purpose, and sometimes you bring one of them yourself.

Sara Bareilles’ “Gravity” is, on the surface, about a person. A relationship you can’t escape no matter how hard you try. The pull of someone who isn’t good for you, who keeps drawing you back in even when you know better.

That’s not what I hear when I listen to it.

I actually touched on this in an earlier post — The Story of Me: A Life in Songs — where “Gravity” was already part of my soundtrack. I noted then that the song had become a conversation with my depression and anxiety. But I want to go deeper here, because that description doesn’t fully capture what it means to me.

What I hear in that song is depression itself.

Something always brings me back to you. It never takes too long.

That’s not a person for me. That’s the weight that has followed me for most of my life. The pull that never fully goes away, no matter how much work I do, no matter how many good days I string together. Depression is always there, somewhere in the background, with its own kind of gravity.

There are days when the pull is weak. Days when I barely feel it and I can move and breathe and just live my life. And then there are other days, days I don’t talk about as often, where the pull is so strong I wasn’t sure I was going to be able to break free. Days where I was deep enough in the darkness that I couldn’t see a way out.

I’m not in that place right now. Things are better. Not perfect, not cured. I want to be clear about that, because I think the “I got through it and now I’m fine” story does a disservice to the reality of how this works. But better. Manageable, with the right medication and the right support. That’s the honest version.

But when that song comes on, I still feel it. I still hear the truth it holds for me, even if Sara Bareilles was writing about something else entirely.

The Other Side of the Dark

“Angel” by Ellis Delaney lives in that same space for me — and it also appeared in The Story of Me, sitting just a few songs away from “Gravity” in my Act 2 playlist. Not a coincidence, I think.

I’ve actually talked with Ellis a handful of times, and I’ve heard them speak about what “Angel” means to them. And I’m pretty sure it isn’t what I hear when I listen to it.

What I hear is the other side of depression. If “Gravity” is the weight pulling you down, “Angel” is the reaching. That quiet, aching hope that someone will just show up and be there not to fix anything, not to have all the answers, just to sit with you in it.

I need a little company. All I need is a pat on the back.

There have been moments in my life where that was all I needed, and it felt like the hardest thing in the world to ask for.

Knowing what Ellis intended doesn’t change any of that. I’ve heard it straight from the artist, and I still walk away with my own meaning intact. That’s not me mishearing the song. That’s the song doing something Ellis may not have even known it was capable of.

The Gift Inside the Song

That’s the power of a great song. It gives you something, and then it gives you permission to find whatever lives inside it for you.

Dan Wilson wrote a lullaby for his daughter and handed the world what sounded like a bar-closing anthem. Sara Bareilles wrote about heartbreak and handed me a map of something I’d been carrying for years without quite having the words for it. Ellis Delaney wrote whatever “Angel” is really about — and handed me a lifeline on the nights I needed one.

The meaning you weren’t supposed to find might be the one that matters most.

05/31/26
Watching Shrimp Videos and Doing the Math

So I’ve fallen down a YouTube rabbit hole again. Shrimp keeping. Fish keeping. Aquascaped tanks I’ll never build. Planted nano setups with little neocaridina shrimp picking around the moss.

I had fish and shrimp for years, with the joy and the loss that come with keeping anything alive. Eventually it all came down.

Now I’m sitting here thinking about getting back into it. And the more I sit with that thought, the more I realize I’m not really thinking about shrimp. I’m doing the same quiet math I do with every hobby and every pet:

What can my body actually sustain?

Why the tanks came down

I started the hobby with a 36 gallon tank. It didn’t take long for that to feel like too much. So I downgraded to a Fluval Flex 15 gallon in the living room, then later added a Fluval Flex 9 gallon on my desk in the bedroom.

The 9 gallon happened because of a betta. One of those poor fish living in a lonely little cup at a big box pet store. You’ve seen them. Stacked on shelves in maybe an inch of water, sometimes for weeks. A whole nine gallon planted tank felt like the bare minimum I could offer.

The 9 gallon lasted a couple of years, until enough shrimp and fish had died in too short a stretch that it felt like the right time to let the tank go too. The 15 gallon hung on a few more years before the urge to rearrange and downsize finally pushed me out of the hobby altogether.

Fish tank maintenance is hard work. Even more so when you have mobility challenges.

You’re hauling water in and out. Reaching down into the tank to scrub algae. Wrestling a gravel vacuum into corners you can barely see. Lugging buckets that are either too heavy on the way out or sloshing everywhere on the way back in.

None of that is a one-time thing. It’s every week or two, forever, as long as the tank is running.

I loved having the tanks. I loved watching everyone in them.

But the cleaning slowly became something I dreaded. And a hobby you dread isn’t really a hobby anymore.

Why shrimp keep pulling me back

Shrimp tanks, especially small planted ones, are a different animal. They’re forgiving in ways fish tanks aren’t.

A well-cycled, heavily planted nano tank with shrimp basically runs itself. Light feeding. Small water changes. The plants do a lot of the heavy lifting for water quality. The shrimp themselves are tiny cleanup crews.

It’s the same hobby in spirit: the watching, the planning, the gentle obsession with water parameters. But with a fraction of the physical demand.

That matters. A lot.

The quiet pet math

It’s worth pausing here to say what I actually mean by “the math.”

If you’ve heard of Spoon Theory, you already get it. Coined by Christine Miserandino in 2003, the shorthand is this: disabled and chronically ill people start each day with a limited number of spoons. Each spoon is a unit of energy. Every task costs spoons.

Showering. Cooking. An appointment. A conversation. Cleaning a fish tank.

All of it draws from the same pile. When you’re out, you’re out. And borrowing against tomorrow has a cost.

The math is figuring out which spoons go where.

That’s what I’m doing when I think about a shrimp tank versus a fish tank. It’s what I’m doing constantly, with everything else too.

Disabled people do this math all the time. Not just with hobbies. With pets too.

Surley is my service dog. He earns his keep, and he saves me spoons. Every task he does for me is a task I’d otherwise spend my own energy on. If he weren’t a working dog, I honestly don’t think I would have a dog at all. Dogs are physical. Walking. Picking up after them. Bath time. All of it costs spoons.

The cat is easier, mostly because Jason handles the day-to-day. Feeding, cleanup, all of it. I handle the vet appointments. And when Jason’s out of town, the rest is on me too. Most days though, the cat doesn’t draw much from my pile.

And shrimp? Different math entirely.

Every fish tank I had cost spoons no matter the size. The 36 took more than the 15. The 15 took more than the 9. But all of them took, week after week, forever.

A planted shrimp tank would still cost spoons up front. Cycling. Planting. Getting the water dialed in. That’s real work.

But once it’s established, the ongoing cost drops in a way a fish tank’s never did. Top off some water. Drop in a piece of food. Watch them be weird little aliens.

That’s not laziness. That’s a real consideration.

What I’m sitting with

I haven’t decided anything yet. The tanks aren’t back up. The shrimp aren’t ordered.

But I think a small planted shrimp tank might happen. Something low. Something I can reach into without contorting. Something that’s mostly self-sustaining and mostly there for the joy of watching it.

That feels like the right kind of hobby for where my body is right now. Not the version of fish keeping I had before. A version that fits.

I’ve done this kind of right-sizing before, after all. 36 gallons to 15 to 9 to nothing. A small shrimp tank would just be the next step in the same direction.

I think a lot of disabled people end up doing this same kind of right-sizing with the things we love. Not giving them up, but reshaping them. Finding the version we can actually sustain.

That’s not settling. That’s smart.

If you have a hobby or pet, have you done this kind of right-sizing too? I’d love to hear what that looked like for you.

05/23/26
Wondering Who Would They Be
Today would have been Dempsey’s 10th birthday.

Ten. Double digits. I keep turning that number over.

Dempsey was my service dog: a silly, loud, boundlessly energetic chocolate lab who was on my right side for four and a half years. He passed away on August 18, 2022. This post lives honestly in the space of grief and loss, so if that’s not where you are today, save it for another time. No pressure.

But if you’ve ever lost someone too soon, a pet, a person, anyone you loved, and found yourself wondering who they would have become: this one is for you.

A Heart That Was Always a Little Too Big

Dempsey was diagnosed with third-degree AV block shortly after his fifth birthday. His heart’s electrical system wasn’t communicating the way it should. We got a pacemaker. The vet was reassuring: he would go on to live a normal life, with limitations, but not dramatic ones. He would still be Dempsey.

I believed that. I had every reason to.

And then August came.

I try hard not to play the would’ve, should’ve, could’ve game with what followed. It doesn’t do me any favors, and I think it does a disservice to his memory. What I know is that the pacemaker gave me more time with him. I’m grateful for that time.

I joke with my friends that he went out with his boots on. You didn’t know anything was wrong until he was gone. He didn’t feel anything. I, on the other hand, lost my best friend, my right arm, my companion, my Dempsey, my silly chocolate lab, my world.

The questions I carry aren’t about what I did or didn’t do. They’re not regret questions. They’re love questions. There’s a difference, and it matters.

The Questions I Keep Coming Back To

One shape of grief I didn’t expect was the wondering. Not just missing who he was, but genuinely not knowing who he would have become.

Here are the questions I keep asking.

Would he still be working?

Dempsey was a service dog. A good one. But at 10, would he still have been working? Would the day-to-day craziness of my life still have felt like a calling to him, or would he have looked at the situation, looked at the couch, looked at Kalo, and made a quiet executive decision to retire?

(Kalo, for the record, did not like him. Spaz before him merely tolerated him. The cats were united on this.)

Service dogs do retire. It’s a real and normal part of their lives. But I never got to watch that transition with Dempsey. I never got to see him decide he’d done enough and that a calmer chapter was waiting. That’s one of the smaller losses nested inside the bigger one.

If you want the longer version of who he was and where we started, Dempsey: Where It All Began has it.

Would he still have played like that?

When Dempsey played, the whole room knew it. He was loud. He was energetic. He didn’t do anything quietly when there was fun to be had.

Would that have mellowed at 10? Would he have found a more dignified approach to playtime, or would he still have been the dog who showed up to have a good time and made absolutely sure everyone knew it?

I think I know the answer. But I’ll never be sure. And there’s something in that uncertainty that sits with me.

Would my grief be different if he had been older?

This is the question I sit with the most.

Honestly? I think yes.

Not smaller. Not easier. But different.

When someone dies after a long life, there’s still loss. There’s still grief. But there can also be something else: a sense of a full arc, of a life that had room to unfold. Losing Dempsey at six, suddenly, after every reassurance that he had years ahead of him, didn’t have that. There was no arc. No completion. Just an ending that arrived without warning and left the rest of the story unwritten.

That kind of grief, the sudden kind, the too-soon kind, carries a particular weight. The future you expected doesn’t just disappear. It hangs there, unfinished.

For Anyone Who Has Lost Someone Too Young

Dempsey was a dog. But the “who would you have been” question doesn’t only live in pet loss. It lives in any grief where someone was taken before the story felt finished. A child. A friend. A parent too young. A companion of any kind.

If you’re carrying a version of this question, I hope it helps to know that someone else is asking it too. And that there is no wrong way to grieve someone who mattered to you.

Who would Dempsey have been at 10? I don’t know. But asking is one of the ways I keep him close. And I’m not going to stop anytime soon.

If this landed somewhere tender, there’s more on Dempsey here: A Ghost in the Wiggles is a poem that lives in a similar space, and Passengers on the Journey takes a wider look at how loss accumulates over a life.

Resources

If you’re navigating grief and could use some support, a few places to start:
- Association for Pet Loss and Bereavement: Online support groups and resources specifically for people grieving the loss of a pet, including scheduled chat support groups.
- Pet Loss Support Page: A long-running online community with support resources, memorial pages, and a Monday evening chat group for those in grief.
- The Compassionate Friends: Primarily a resource for families who have lost a child, but their broader community and materials can offer support to anyone navigating sudden or early loss.
- SAMHSA National Helpline: Free, confidential mental health and emotional distress support, available 24 hours a day, 7 days a week.
Have you ever found yourself wondering who someone you lost would have become? I’d love to hear about it in the comments, if you’re up for sharing.
05/11/26
Grieving the End of The Things We Leave Unfinished

I finished The Things We Leave Unfinished yesterday. At work.

And then I sat there staring at my computer screen for a solid five minutes, headphones still in, not moving, because I genuinely did not know what the hell had just happened to me.

Eventually I took my headphones off, got up, and took the dog for a walk. Because what else do you do? You can’t just go back to trying to focus after that.

You can’t.

The dog didn’t know why we were suddenly going outside, but he didn’t ask questions, and I appreciated that.

Rebecca Yarros. If you’ve been anywhere near #BookTok in the last couple of years, you probably know her from the Empyrean series, Fourth Wing and everything that followed. That’s how I found her too.

And if you’re part of the disability or chronic illness community, there’s a good chance she hit you a little differently than she hit everyone else.

Yarros has Ehlers-Danlos syndrome. She’s talked openly about it, and she built that lived experience into the Empyrean series through her protagonist Violet, whose chronic illness is woven into the story not as a plot device, but as just part of who she is.

For a lot of us in the disability community, that kind of quiet, matter-of-fact representation is rare enough to stop you in your tracks. It stopped me. So I already trusted this author with something before I ever picked up The Things We Leave Unfinished.

I thought I was prepared for what she could do to me.

I was not prepared.

Dual timeline. WWII love story tangled up with a present-day one. If you know, you know. If you don’t, go read it, and then come back here, because I need to talk about it with someone who’s been through it.

A note before we go further: this post has vague spoilers. I won’t be laying out plot points in detail, but if you’re good at reading between the lines, you may be able to piece some things together. You’ve been warned. Go read the book first.

Seriously.

Go.

This Isn’t the First Time a Book Has Done This to Me

The last time a book wrecked me like this, I was sitting on my aunts’ kitchen floor.

I was in college. I had been over to their place with the last Harry Potter book, told them I couldn’t leave to go back to my dorm until I finished it, and proceeded to plant myself on the kitchen floor and read. For what felt like hours. Deeply, completely, embarrassingly immersed right up until the last page turn.

And then I just sat there. On the floor. Not ready to leave that world. Not sure how to go back to normal life after living so long inside that one.

That’s a particular kind of loss, not just the end of a story, but the end of a relationship with a story. The kind that’s been woven into actual years of your life. I filed that feeling away, figured it was specific to Harry Potter. To the scale of it. The years of it.

And then yesterday happened.

The Normal Kind of Grief

There’s a particular hollow feeling that shows up when you finish a book you loved. It’s not sadness exactly, or it is, but it’s mixed up with other things. The story was still living in my head all day. I’d think about a scene between Scarlett and Jameson and feel warm about it, the way you do, and then remember: oh. There’s no more. That’s all there is.

I miss the characters. Not in a hedged, I-know-they’re-fictional kind of way. Just, miss them. Full stop. I spent hours living alongside these people. I knew how they talked, what they were afraid of, the way love looked for them under impossible circumstances. And now they’ve stopped existing in any new way.

That’s the ordinary grief of a good book ending. I know it well. But this one had something extra.

The Revelation Kind of Grief (Here’s Where It Gets Vague)

There’s a specific kind of hurt that comes when a story delivers a revelation near the end that reframes everything you thought you knew. Not a trick. Not a cheap twist. The kind that’s been earned, slowly, carefully, and lands with a weight that almost knocks you flat.

That’s what happened near the end of this book.

I found out something about a character I had loved, trusted, and grieved alongside the whole time, something that changed who I understood her to be. Entirely. The character in the book who receives this news reacts in a way that mirrored exactly what was happening in my chest in that moment. I felt it right alongside her.

The grief doubled. I had to mourn the version of the character I thought I knew. Then mourn the truth. Then sit with the fact that the truth was, in its own way, even more heartbreaking than anything I’d braced for.

It’s a strange feeling, retroactive grief. Going back over everything in your head through a new lens. Realizing the sacrifices were bigger than you understood. The losses, deeper. The love, somehow even more devastating for it.

And I’m sitting at my desk at work going: holy crap. What the hell just happened.

The Audiobook Factor

Here’s the thing I didn’t fully account for going in: I listened to this book. And the narrator had a fairly decent English accent for the historical timeline: Scarlett, the letters, all of it. Which sounds like a small detail, but it wasn’t.

There’s something about a voice in your ear that collapses the distance between you and a character in a way that reading off a page doesn’t always do. I wasn’t just reading about Scarlett and Jameson, I was hearing them. Their world had a sound. And when that world ended, it didn’t just close like a book. It went quiet. All at once. In my ears.

One second I’m in WWII England. The next I’m just… at my desk. Staring at a screen. Surrounded by the ordinary sounds of my ordinary day. The whiplash of that is something else entirely.

Returning to Real Life, Reluctantly

Coming back to real life after a book like this always takes a minute. A story is its own world with its own weather, and you get used to that weather. Real life doesn’t have the same architecture. Problems don’t resolve by the final chapter. The pacing is all off.

Sometimes you need a walk. Sometimes you need to sit on your aunts’ kitchen floor for what feels like an hour. Sometimes you need to stare at your computer screen until the feeling settles enough that you can breathe normally again.

All of those are valid. All of those are just what it looks like when something got through.

That’s What a Good Book Does

I think the grief I’m carrying right now is actually a kind of gratitude in disguise. You don’t grieve stories that didn’t matter. You don’t lie awake thinking about characters who didn’t get under your skin.

This one got under my skin. So did Harry Potter, all those years ago on that kitchen floor. And I think I’m glad, genuinely glad, that I’m still capable of feeling it. That a voice in my ear, telling me about people who never existed, can send me out the door mid-workday just to walk it off.

The things we leave unfinished. Not just in the novel, but in the feeling it leaves behind. Some books close and you’re done. Some books close and you keep carrying them for a while, working something out.

This is one of those.

I’ll be okay. I just need a few days and probably something lighter to listen to next. (Suggestions welcome. Something with nobody dying would be great, thanks.)

Have you ever finished a book, or an audiobook, and just needed a minute? What sent you to the floor? Come sit with me.

Oh, and one more thing, because the universe apparently isn’t done with me yet: Lionsgate recently announced they’re adapting The Things We Leave Unfinished into a feature film. So I’m going to need a minute to process that too. If you need me, I’ll be on the floor.

05/01/26
You Only See a Snapshot: That’s Not Enough to Judge
Scroll through Facebook on any given day and you’ll find it: a parent sharing a moment with their child, and buried in the comments, a pile-on. Someone calling them lazy. Someone asking why they haven’t “fixed” it yet. Someone offering unsolicited advice wrapped in thinly veiled judgment.

It happens constantly in disability parenting spaces. And it needs to stop.

The People I Follow And Why This Matters to Me

I want to be clear upfront: I follow a lot of autistic people and autism families on Facebook, and I do it because they’re genuinely worth following. The autistic people I know personally are cool, funny, thoughtful, and totally normal.

They are just navigating a world that wasn’t really designed with them in mind. The families I follow online are doing the same: showing up every day for their kids, sharing the good moments and the hard ones, and being more honest about their lives than most people are willing to be.

Some of those families have kids with severe autism. And some of those kids are in diapers or pull-ups. When I see that, I don’t see failure. I see a family that’s figured out what works.

When strangers on the internet see it, sometimes the reaction is very different.

What People Don’t Understand About Severe Autism and Potty Training

Potty training isn’t just about learning a habit. It involves sensory awareness, the ability to recognize and interpret body signals, motor coordination, communication, and the executive function to stop what you’re doing and act on that signal in time. For kids with severe autism, any or all of those pieces may be genuinely, neurologically difficult, not because no one tried, but because the wiring works differently.

For some kids, traditional potty training isn’t a realistic goal at least not on anyone else’s timeline, and maybe not ever in the conventional sense. Pull-ups and diapers in those cases aren’t a sign that parents gave up.

They’re often the result of years of trying, working with therapists, adjusting approaches, and ultimately landing on what actually preserves the child’s dignity and the family’s ability to function.

When someone fires off “have you even tried potty training them?” in the comments. They’re not helping. They’re showing how little they understand about what that family has already been through.

Pull-ups and diapers aren’t a sign that parents gave up. They’re often the result of years of trying, working with therapists, and ultimately landing on what actually works.

I Have Some Skin in This Game, Too

I’m not writing this from the outside looking in. I have cerebral palsy. CP affects muscle coordination and spasticity throughout the body, and for me, that includes my bladder.

What that looks like in real life: there’s sometimes no gradual warning. One moment everything is fine. The next, my bladder is spasming and I have a very short window, sometimes no window, to get to a bathroom. It’s not a matter of planning better or paying more attention.

That’s just how spasticity works.

So yes, I use pull-ups. It’s practical. It’s smart. I’ve made my peace with it and I truly don’t care what anyone thinks.

I’m sharing this not to make the post about me, but because I want to be honest: I understand something about making practical choices around a body that doesn’t always cooperate. And I understand what it feels like to have those choices be nobody’s business but your own.

You’re Only Seeing a Snapshot

Social media gives you a moment. One frame from a film that’s been running for years.

You don’t see the context. You don’t see what was tried before. You don’t see the appointments, the therapy sessions, the late-night research, the hard conversations, the small victories that don’t look like anything to the outside world but meant everything to that family. You don’t see the grief, or the resilience, or the way a parent has quietly rewritten their definition of progress a hundred times over.

What you see is one post. One photo. One moment.

And yet that’s enough for some people to render a verdict.

What to Do Instead

This isn’t complicated. It just takes some intentional effort:
- Pause before commenting. Ask yourself: does this person need my input, or did they just share something from their life?
- Ask instead of assuming. If you genuinely don’t understand something, curiosity is more useful than criticism.
- Believe people when they say something is hard. You don’t have to fully understand a situation to respect that someone is doing their best in it.
- Amplify instead of critique. If you see a disability parent or a disabled person sharing their reality honestly, share it. Normalize it. Help build a space where people feel safe being real.
The World Could Use More of This

My original thought was simple: if there were more people willing to support instead of judge, the internet — and honestly, the world — would be a better place.

I still believe that. Disability doesn’t come with a handbook, and every family’s path — every person’s path — looks different. The least we can do is show up with some grace for the moments we don’t fully understand.

You only see a snapshot. Make sure the story you’re telling yourself about it is worth telling.

Written by someone who knows this isn’t theoretical. 💙
04/12/26
Training for a New Winter Olympic Game (Apparently)

Winter has officially came back to Minnesota which means one thing: absolutely nothing is predictable.

This morning, I confidently took the dog down the driveway for his usual morning bathroom break. The descent? Smooth. Controlled. Graceful, even. I briefly considered that I might have a future in the Winter Games.

The return trip, however, was less inspirational documentary and more blooper reel.

Halfway up the hill, my wheelchair wheels began spinning with great enthusiasm and zero productivity. Snow spraying. No traction. Dog already finished with his event and waiting at the top like an unimpressed judge.

In that moment, it felt like I was personally qualifying for the uphill event at Winter Games in Milano-Cortina.

However, instead of international glory, I was competing against three inches of fresh Minnesota chaos.

The thing about winter here is that it doesn’t gently arrive. It shows up overnight, rearranges your plans, and turns a simple dog outing into an endurance sport.

In hindsight, I could have waited until the snow stopped.
I could have waited for the hill to be cleared.

But where’s the Olympic spirit in that?

Gold medal in effort.
Silver in spinning.
Bronze in decision-making.

And it’s only February.

02/19/26
Still Becoming, Still Moving Forward

A Season of Reflection

I know I have not written in a while. The end of the year is always been difficult time of year for me. It is a season of reflection, whether I want it to be or not.

There is a line from Have Yourself a Merry Little Christmas that comes back to me every year:

Faithful friends who are dear to us
Gather near to us once more
Through the years we all will be together
If the fates allow.

The older I get, the heavier that line feels. It holds gratitude and truth at the same time. Some people are still here. Some are not. None of it is guaranteed.

That song carries personal history for me. Have Yourself a Merry Little Christmas was the first song I sang on our family Under the Tree holiday CD. It was the very first song I sang. This was back in 1999. It has quietly followed me ever since.

A lot of people send out polished Christmas letters listing accomplishments and milestones. I have never been good at that. This year brought change, not trophies, including quieter, more personal ones.

Still Becoming

This past spring, I wrote about the idea of always becoming. It was about growth that does not arrive with neat endings or clear resolutions. That theme followed me all year, often in uncomfortable ways.

Part of that becoming meant choosing honesty. I wrote about going by the name Alyn, not as a reinvention, but as recognition. Outwardly, it was a small change. Yet, it reflected something deeper about my self-understanding. It also showed how I want to move through the world.

Partnership and Home

Jason and I are still steady. We passed fifteen years of living together, and at some point you stop counting.

It is like age. I turned forty-two this year, technically, but numbers matter less than continuity. What matters is that we are still here, still choosing each other, even when things are heavy.

The animals are still holding strong. Surley remains happy, eager, and ready to work. Kalo, who seems determined to live forever, is slowing down but still very much himself. He is older now, a little stiffer, a little clingier. He has started sitting with me more, something that once belonged exclusively to Spaz. I do not question it. I take it for what it is. Even when I am playing video games, and he is draped across my arm while chaos unfolds on the screen. I feel grateful for the quiet companionship.

Work and Worth

Work continues to be complicated. I am still employed, and I enjoy what I do and the people I work with. The problem is consistency. Months can pass without shifts. Disability income keeps me afloat, but barely. Earlier this year, I wrote about being more than qualified and still overlooked. That experience is not abstract. It lives in unanswered applications and interviews that go nowhere. It is frustrating, but it is also familiar.

There is also the longer view. I also wrote about moving from being a visible symbol to an invisible adult. The attention fades. The needs do not. That reality has shaped how I have moved through this year, even when I did not name it outright.

After months of trying to find something more reliable, I started working with vocational rehabilitation. I have had interviews. Nothing has landed yet. Maybe the new year will bring something different. Maybe it will not. I am still trying.

Uncertainty and Care

There is uncertainty ahead. Jason’s vision remains a concern. His degenerative eye condition means there may come a time when he cannot work. If that happens, our financial reality could change dramatically. It is one of the key reasons I have been more actively looking for work.

Jason has carried more than his share this year. He lost his father late this summer, a loss that reshaped everything. On top of that came serious eye complications unrelated to Usher syndrome. Surgeries followed. Complications followed those. We talk about it daily. I go to appointments. I listen when frustration takes over. Earlier this year, I wrote about passengers on the journey, and that idea feels especially true now. Support is often quiet. It looks like showing up and staying.

Love, Loss, and What Remains

Earlier this year, I wrote about quiet reminders, the small things that steady us when life feels loud. That idea has stayed with me. As the years pass, the awareness of who is still here and who is not becomes sharper. None of it is guaranteed, and that truth carries more weight than it once did.

I think about those who remain, the ones who show up and stay. I also think about those who are gone. Earlier this year, I wrote about holding onto love after loss. Grief does not replace love. It reshapes it. That truth lives with me when I think of my friend Colleen. I also think of Jason’s dad Harold. There are so many people I never had enough time with.

I think about Dempsey. Three years have passed, and I still miss that stubborn, energetic chocolate Labrador. Surley is here and wonderful, but loving him does not erase the love I still carry for Dempsey. There is not a day that goes by that I do not think of my chocolate boy.

This year has been a lot. I am not complaining. Life does not ask permission before it happens. We deal with what is in front of us and keep moving.

Writing, Play, and Practice

Not everything I wrote this year was heavy. I allowed myself a lighter side project, telling parts of my story through music in a life in songs. It was playful and nostalgic, but also revealing. Music has always been a quiet companion. Revisiting it reminded me that reflection does not have to be solemn to be meaningful.

I also took a writing class this year. The pieces that came from it gave me permission to experiment and wander. The pieces were tributes to both Dempsey and Surley. They were imaginings of what Kalo and Surley would do if left alone. They reflected a traveler in a journey through a wasteland. Finally, they were quiet explorations of a life well lived. Writing them reminded me why I write at all. I write not only to educate and inform. Sometimes, I write to process, remember, and imagine.

Choosing Quiet

I have taken a slight step back from social media. I wrote about the tug-of-war between thinking and speaking. That awareness has stayed with me. Not every moment needs commentary. The people who matter know what is going on, and that is enough.

I do not know what the coming year will bring. I know there will be uncertainty, and I know there will be moments of steadiness too. Time spent reflecting in the woods taught me that clarity often comes when noise fades.

For now, I am still here. We are still here. I will keep moving forward. I carry both the past and the present with me. I am still becoming. I am still rolling down the road as best I can. I will move forward together, if the fates allow.

12/26/25
When the Season Shifts

When I first became a soccer fan, I never thought much about the weather. It was just part of the experience. The game and I have evolved. I’ve started thinking about how changing seasons shape what accessibility really means for fans like me. Changing bodies also influences this meaning.

I’ve been reading about Major League Soccer’s proposed move to a fall–spring schedule. I understand the reasoning behind it. Still, I can’t help but think about how it will change the fan experience. This is especially true for those of us who feel the seasons differently than we used to.

When I first became a fan back in 2015, the cold didn’t bother me. I was just excited to be there to feel part of something alive and electric. I remember going to a game one chilly October and bringing one of my aunts along. She thought I “looked cold,” even though I swore I was fine. By halftime, she’d bought me a hot chocolate, a hat, and maybe even a sweatshirt.

I still remember that small act of care. The steam rose from the cup. Her laughter cut through the cold air. I didn’t think much of it then. Yet, looking back, I realize it was one of those simple, human moments that stay with you.

A couple of years later, at our first home game in MLS, the weather turned on us fast. Heavy snow fell throughout the match, thick, wet flakes that clung to your eyelashes and soaked your gloves. The snow was coming down so fast that they had to use leaf blowers to clear the lines.

My toes went numb halfway through, but it didn’t matter. The atmosphere was electric, the crowd united in equal parts misery and joy. We were there together, and that was enough.

Those were different times. I was a different person. I was more willing to push through the discomfort just to be part of the moment.

These days, I’ve noticed that the same weather affects me differently. I attend fewer matches as temperatures drop, and this year I didn’t opt in for playoff tickets at all. It’s not that my passion for the team has faded far from it. It’s just that Minnesota’s fall weather is unpredictable. This unpredictability makes it hard to plan. I find it difficult to feel confident that I’ll be comfortable or safe. The wind cuts a little deeper now. The cold lingers a little longer.

Supporting a team with an outdoor stadium like Allianz Field comes with that territory. Still, it’s made me think more about what “accessibility” really means. We often talk about it in physical terms, ramps, seating, transportation, and those things matter deeply.

Accessibility can also mean something softer, more personal: being capable of participating fully without discomfort, fear, or exhaustion. Weather affects this aspect, particularly for fans with mobility challenges. It impacts those with chronic pain or other health conditions, making the cold more than just an inconvenience.

For some fans, colder games are part of the charm. They enjoy layers of scarves and hands wrapped around coffee cups. There is a sense of endurance that becomes almost a badge of honor. But for others, it’s not that simple. The cold can turn joy into endurance, and that can change the whole experience.

As I’ve grown and my needs have shifted, I’ve noticed some changes. I’ve started to see how sports, something built on togetherness, can sometimes overlook the quiet ways inclusion matters.

The fan experience isn’t just about ticket sales. It isn’t solely about crowd energy either. It’s about whether everyone can share in those moments equally. That’s true for people of all kinds.

This includes those experiencing changes due to age. It also includes people with disabilities, sensory needs, or simply changing bodies who experience the world differently than before. Accessibility isn’t one-size-fits-all, and weather adds another layer to that reality.

I still love this sport, this team, and the community it builds. Soccer has been a steady thread through so many seasons of my life, literally and figuratively. But my relationship to it has evolved as I have. The same stands that once made me feel unstoppable now remind me to listen to my body. To respect its limits. To show up in ways that make sense for where I am now.

If MLS does move to a fall–spring schedule, I hope clubs and stadiums will think creatively. They should consider what that means for all fans.

Maybe that looks like expanding covered seating in some venues. It could also mean improving heat access. Or it could simply involve offering more understanding around accessibility options in cold weather. Sometimes inclusion begins with small acts. It could be a staff member who notices. It might be a space to warm up. Or it could be the willingness to ask, “What do you need to feel comfortable here?”

For many of us, being a fan isn’t about braving the elements anymore. It’s about connection: to the game, to the people around us, and to ourselves. It’s about finding warmth in community, even when the temperature drops.

Seasons shift, people change, and that’s okay. What matters most is finding warmth in the stands. We need warmth in the community. It is essential in the spaces that still make us feel like we belong.

11/12/25
Forever United: Reflections at Season’s End

As I write this, it’s the day after the final regular season home game. As the final whistle blew under the bright lights of Allianz Field, I felt that familiar mix of gratitude. I also felt nostalgia and quiet pride. The last regular season home game always carries a special weight. It’s more than just a match. It’s a celebration of everything we’ve shared over the months.

Even though Minnesota United made it to the playoffs, I’ve decided not to get playoff tickets this year. The main reason is cost. I already struggle to afford the regular season. I am already making payments on my season tickets for the 2026 season. As much as I’d love to be there, I just couldn’t justify the extra expense.

The other reason is the unpredictable Minnesota weather. As the years go on, I find myself less tolerant of the cold. We’ve been blessed with a warmer-than-usual fall. Still, there’s no guarantee it will stay that way. Sometimes practicality wins out, even when the heart wants otherwise.

The Heart of the Game

Soccer has always been more than just a game to me. It’s community, connection, and pure emotion wrapped into ninety minutes. Every season brings new stories, new faces, and new memories that stick with you long after the final whistle. This year was no different. I didn’t make it to as many matches as I’d hoped. Yet, the moments I did experience reminded me why I fell in love with this team. Those moments showed me what made this team special in the first place.

Sometimes life has other plans. Sometimes disability makes things harder than they should be. There are days when energy fades, when logistics get tricky, when even passion has to wait its turn. But that’s okay. We do the best we can with what we’re given, and that’s something to be proud of too.

The games I did make it to were nothing short of incredible. The roar of the crowd excites me. The rhythm of the chants energizes me. The pulse of the drums reminds me every time why I love this sport. There’s something almost sacred about being part of a crowd that breathes in unison. Hearts beat for the same goal. Voices rise together under a canopy of light.

Surley’s Season

Surley didn’t make it to as many games this year either — for a wide variety of reasons. There were days that were simply too cold, and others that were far too hot. Then there were nights like the last game, when they launched pyrotechnics. We’ve made a lot of progress on his fear of fireworks, and I didn’t want to risk a setback. Still, there were plenty of good moments. On a bright note, Surley did make an appearance on the jumbo screen this season. It was akin to what Dempsey did back in the day. A proud moment for both of us.

Forever United

Even when I can’t be there, my connection to this team doesn’t fade. It simply finds new ways to shine. Whether I’m watching from home, the love remains constant. It stays strong when I’m checking updates on my phone. I carry their spirit in my heart, unwavering.

Because love for the game isn’t measured in seats filled or screens watched. It’s found in the stories we tell, the memories that linger, and the quiet hope that refuses to fade.

It lives in the roar of the crowd that still echoes in your mind. You hear it in the rhythm of the chants you can’t help but hum. You feel the pride that stays with you long after the lights go out.

Minnesota United is more than a soccer team. It’s a community and a shared heartbeat. It serves as a reminder that belonging can take many forms.

Whether in the stands, at home, or cheering from the heart, I’ll always carry that unity with me.

Go Minnesota United. Forever United. 💙🖤⚽

10/05/25