Tag: life

Disability

WHEN ACCEPTANCE BECOMES THE WIN

OUR BEAUTIFUL CHALLENGES

As the year comes to an end, I find myself looking back—not just at what I’ve done, but at what I’ve learned. One lesson stands out above the rest: the hardest part of any challenge isn’t overcoming it. It’s accepting it.

When I was younger, I didn’t understand that. I saw challenges as roadblocks—temporary interruptions I just needed to push past. I couldn’t yet see the bigger picture. I didn’t know that some challenges don’t disappear; instead, they ask us to grow around them.

This year also reminded me of something else: dreams do come true. Just not always in the way we imagine. Sometimes they arrive reshaped by reality, surprising us with precisely what we were looking for all along.

I probably began learning these lessons five years ago, when I moved out on my own. That was when I discovered an independence I had always dreamed of but never fully believed was possible for me. Living on my own opened a door to a life I hadn’t let myself imagine before. Still, even then, something felt unfinished—like I was standing in the doorway but hadn’t fully stepped inside.

Part of my dream was always simple: to spend my life with someone who felt natural. For many years, I tried to force connections before I was ready, before I truly understood myself. It wasn’t until I accepted who I was—my needs, my limitations, and my strengths—that love arrived in the way it was meant to.

Two years after moving out on my own, I fell in love with a friend who had quietly been a dream of mine for years. We’ve now been together for four years, building a life grounded in understanding, patience, and care.

As much as we would love to live together, share a mailbox, and get married, we can’t—because the systems meant to support us would take so much away if we did. That truth still hurts. But instead of letting it stop us, we found a way to make our lives work. He lives in the apartment next to mine. It may not match the picture I once held in my mind, but it is honest, loving, and ours.

This is where Our Beautiful Challenges comes in—the fictional organization at the heart of my stories, shaped by the way I’ve learned to live. In that world, challenges don’t need to be erased to have value. They can be adapted to. They can be carried. And sometimes, they become the very thing that teaches us how to live fully.

When telling this story feels too hard, I let Josephine speak for me. Through her, I explore the complicated and tender parts of life—the spaces that don’t fit neatly into expectations. Josephine reminds me that there is beauty in the in-between, in lives that don’t follow traditional paths but are rich all the same.

What this year has taught me is that I don’t have to fight my challenges anymore. I can work with them. Shape my life around them. Let them guide me instead of define me.

It has taken me almost fifty years to understand this, but I can finally say it with peace in my heart:
I have everything I want.

Disability

PART 1: THE JOY HIDDEN INSIDE THE HARD MOMENTS

OUR BEAUTIFUL CHALLENGES

This series is about those moments—about the strength I found not in perfection or ease, but in breathing through the most complex and beautiful parts of my journey. Each part of this series explores how challenges shaped me, taught me, and helped me discover joy in unexpected places.

My life journey has been beautiful, but challenging. So when my yoga teacher asked us to pick a joyful moment from our journey, I surprised myself by choosing the most difficult time of my life. I decided it because those challenging moments are the ones I made it through. I reached the other side. And how many people can genuinely say they’ve fought through the most complex parts of themselves without giving up?

Most people see joyful moments as something bright and easy from the start. And yes, that would be simple. But my joyful moments come with a price, shaped by the challenges I’ve had to face. Without those struggles, I wouldn’t walk the way I do, talk the way I do, or live the independent life I’ve built as a person with a disability. If everything had come easily, I wouldn’t be who I am today.

What I’ve learned is that not every joyful moment begins joyfully. Sometimes you have to find the joy hidden inside the complex parts.

In yoga, this lesson becomes even clearer to me. When class begins, and I take that very first deep breath in, it’s like my whole body remembers what it feels like to slow down, to open, and to let myself be fully present. When the teacher says, “Breathe into the challenging moments,” it’s more than instructions for a pose—it’s a reminder of how I live my life. And when she says, “Let your breath guide you,” I can’t help but smile from within. Because, as difficult as my challenges have been, they’ve also become some of my most joyful moments. They taught me how to stay present, trust my own strength, and keep breathing even when life felt heavy.

Every time I breathe through a pose, I’m reminded that I’ve breathed through much more complex things. I’ve survived moments that once felt impossible. I’ve crossed through storms that once felt endless. And each time, I came out firmer, softer, and more myself.

So when my teacher says, “Pick a joyful moment in your life journey,” I realize I could never choose just one. Joy doesn’t show up only when life is easy. Joy shows up when you fight, when you grow, when you breathe… and when you find yourself standing on the other side of something you thought would break you.

My joy has always lived inside my challenges—and that’s what makes it so powerful.

Disability

“MORE THE 48 HOURS”-ORIGINAL SONG

OUR BEAUTIFUL CHALLENGES

Verse 1

They said I wouldn’t make it, not past the second day,
Whispered quiet in the hallway, told my parents “just pray.”
But I was born a fighter, I pushed through every doubt,
Turned every limit into something I could rise above somehow.

Pre-Chorus

I learned to breathe on broken days,
I learned to walk through heavy haze,
They never thought I’d make it far—
But look at who I are.

Chorus

’Cause I’m more than forty-eight hours,
More than the fear in their eyes,
More than the girl they counted out,
Standing here living my life.
I didn’t rush the future—
I let time open its doors.
I’m more than they expected.
I’m more than forty-eight hours… and so much more.

Verse 2

Told myself love wasn’t for me, said I’d never wear a ring,
Watched the world fall into place for others with everything.
I pushed too hard for moments that were never meant to stay,
Till I learned that letting go is how life finds its way.

Pre-Chorus

I slowed down just enough to see,
Life was coming back to me,
And in the quiet, love walked in—
An unexpected friend.

Chorus

’Cause I’m more than forty-eight hours,
More than the stories they told,
More than the “no” that shaped my start,
Growing into something bold.
I didn’t chase the future—
I let it come to my door.
I’m more than they imagined.
I’m more than forty-eight hours… and so much more.

Verse 3

Now I live a life that’s mine, supported but standing strong,
A home built from my courage, I’ve been proving them wrong.
And I found someone who loves me, someone I can call my own,
Even if the system’s rules make it hard to share a home.

Pre-Chorus

I’ve always been a square peg
In a world of circles drawn—
But I bend the world around me
Till I find a place I belong.

Chorus

’Cause I’m more than forty-eight hours,
More than the doubts they believed,
More than a puzzle piece that never
Fit where it should be.
I didn’t force the future—
I learned what waiting is for.
I’m more than they expected.
I’m more than forty-eight hours… and so much more.

Bridge

Some days feel like sunrise lighting up my skin,
Some days feel like footsteps where my future begins.
Love didn’t pass me over—no, it just took the long road home,
And now I know… I was never walking it alone.

Final Chorus

’Cause I’m more than forty-eight hours,
More than the limits they drew,
More than the world ever gave me—
I became my own breakthrough.
I didn’t rush the future—
I let my heart restore.
I’m more than they imagined.
I’m more than forty-eight hours…
And now I’m so much more.

Disability

AN UNEXPECTED LIFE: BECOMMING THE WOMEN I WAS NEVER EXPECTED TO BE

OUR BEAUTIFUL CHALLENGES

There are stories we are handed at birth, and then there are stories we write ourselves.
This is mine.

The First 48 Hours

As someone with a disability, my life began with doubt.
People told my parents I would never amount to anything.
Some said I might not make it past the first forty-eight hours.

Those words were meant to be limits.
But instead, they became fuel.

I didn’t just make it past those first hours—
I made it into days, into years, and into a life no one expected.
I learned early that survival wasn’t guaranteed,
but fighting for myself would always be part of my story.

Learning to Live, Not Just Survive

There were many moments when I didn’t think I would make it.
Times when the world felt heavy and lonely.
Seasons when I convinced myself that love, marriage, and partnership weren’t meant for people like me.

I told myself I didn’t want those things—
but deep down, I did.
I wanted the kind of life I saw everyone else living so easily.

Because of that longing, I began to rush life.
I tried to force things that weren’t ready.
I pushed myself forward without taking time to breathe or grow.
I didn’t give life a chance to meet me halfway.

But everything changed when I finally slowed down.
When I stopped chasing and allowed life to unfold naturally.
In that stillness, I stumbled into something unexpected—
something softer, steadier, and more beautiful than anything I had tried to force.

I stumbled into my life.

The Life I Never Expected

Today, I live the kind of life I once believed was impossible.

I have my own home—
not alone, but independently supported by family, friends, and a few amazing PCAs who help with my day-to-day needs.
I built a life that works for who I am and what I need.

And then, the most unexpected part of all:
I found my person.

Someone I can call mine.
Someone who loves me as I am,
who understands my challenges without me needing to explain,
who doesn’t see my disability as a barrier to love.

We dream of living together.
We dream of marriage.
We dream of a shared life.

But government assistance makes those dreams harder for people like us.
Love comes easily—
the system does not.

Still, like everything else in my life, I adapt.
I adjust.
I figure things out.

Because I’ve always been a square peg in a round hole.
And when something doesn’t work for me,
I make it work.

It’s how I survived.
It’s how I grew.
It’s how I became the woman I am today.

What My Life Feels Like Now

Some days feel like sunrise—
a soft, warm light touching places I once believed were out of reach.

Some days feel like walking a new path,
one that no one else has walked,
leaving footprints that whisper,
“Yes. A life like this is possible.”

And some days feel like holding the hand of someone who chose me,
realizing love didn’t skip over my life—
it simply took its time.

Becoming More Than Expected

I wasn’t supposed to make it past 48 hours.
Yet here I am—
living, loving, growing, building a life of my own.

I made something of myself.
Not because the world made space for me,
but because I created my own space when none existed.

The life I once feared I would never have
found me in the quiet moments,
in the slow breaths,
in the unexpected turns.

I didn’t just survive.
I became, and I won

Disability

LEARING NOT TO FEAR MYSELF

OUR BEAUTIFUL CHALLENGES

Reflective, intimate, emotional, detailed

Fear has always been a quiet companion in my life. Some people meet fear like an opponent they can outrun. Others meet it like a wall that keeps them from taking another step. I’ve been both of those people. Living with cerebral palsy meant learning early that my life would come with challenges—and that each challenge would come with its own brand of fear.

I used to believe fear was something that happened to me. But looking back, I see that fear was also something I held tightly. It was familiar. Predictable. It felt safer to fear the unknown than to walk toward it.

The biggest fear I carried was one no one talked about. I was afraid of people who looked like me—people with cerebral palsy. I convinced myself that being around others with CP would somehow make mine worse. I didn’t realize that what I feared was seeing myself clearly.

That fear cost me years of connection, friendship, and belonging.

And then there were the school years—where my fear of not fitting in pushed me forward. I wanted so badly to be one of them, the “normal kids.” I tried to outrun my own body, my limitations, and the feeling that I was somehow on the outside looking in. But the truth is, the only person who feared me… was me.

It took time—years, really—to stop fearing my own reflection. To stop fearing the community that was always waiting for me with open arms. When I finally let myself be curious instead of afraid, I discovered something beautiful: I wasn’t alone. I had never been alone.

Now, I can look at fear with clearer eyes. It still shows up—it probably always will—but I no longer hand it the steering wheel. I know now that the fears we run from are often the ones we need to turn toward. Because on the other side of that fear is a part of ourselves waiting to be reclaimed.

Disability

SPEEKING TO MYSELF WITH KINDNESS

OUR BEAUTIFUL CHALLENGES

The way I would speak to myself with kindness will tell myself that I’m who I am. I have my mind, I can make my own choice, and I can live independently. I may have cerebral palsy, it may limit me at times, but it’s not who I am. My disability is only a disability; it’s a part of me just like my curly hair. Yes, I will never use my disability as an excuse for who I am. I have chosen to speak to those parts of myself with kindness, as much as I have spoken negatively in the past.

It has been and still is a challenge to speak to myself with kindness. Having a disability can be seen as a weakness. At this time in my life, I view it as a strength, but it wasn’t always this way. I grew to see that my disability was my strength. Until I learned to accept who I was, talking to myself with kindness was the one thing I hated doing the most. 

The negative talk from people paralyzes my sense of self. It wasn’t until I was so unhappy with who I was that I had an awakening of how if I kept these negative thoughts and talked myself into such a negative way, it stopped me from living. So, how did I change my thoughts to be kinder to myself?  

It took decades to destroy myself with negative talk, so why did I think it would take me a snap of a finger to switch my thoughts to positive ones?  It has taken me years to start changing my thoughts to a more positive outlook, so I can treat myself with the kindness I deserve. I only saw the weakest because of what people were filling my head with. I understand that other people were also telling us positive things, but we all know it can be hard to accept both the positive and the negative. Unfortunately, if you had to pick one over the other to stay in your mind, most likely it would be the negative things that people tell you that stay with you.

When those negative comments from people get into your mind, it can be easy to force yourself. All these negative thoughts detract from who you are and who you aspire to be. It can break how you speak to yourself. It also makes you believe you’re worthless. That is how I felt about myself.  

And how to treat myself with kindness and gratitude for who I am. “Romo wasn’t built in a day.” It took me years to destroy myself; why would it take me one day to rebuild? It took me years to rebuild myself, and still today, I  don’t think I’m 100%. 

I have to face my reflection every day. I have to remind myself every day that I am strong enough to face life.  When living with a disability, there are days I just want to let the disability take over. There are days when I know that it’s going to get more challenging as I get older, and I don’t want to be the teacher the rest of my life. However, I want to live life to the fullest, and if that means practicing kindness with myself every day, then so be it.

Disability

WHY WAS IT SO IMPORTIANT FOR ME TO LIVE INDEPENDENTLY AS SOMEONE WITH CP?

OUR BEAUTIFUL CHALLENGES

 There are several reasons it is essential to live independently. The main reason was to prove to myself that I could live independently, and another reason was that the people around me would also see that I could live independently. Moving around my environment alone was the one thing that I felt would make me feel like I had reached independence,  not only as someone with CP but as someone who had been labeled all my life. 

At points in my life, many people have only seen me through a label. After many years of being viewed and treated as a label, you begin to see yourself as that label. I also began to see myself as a label, which caused me to try to do anything I could to escape that label. I lived with CP but did everything possible to look at it in the rearview mirror. All I ever wanted was to be more like my peers. 

What many people do not discuss regarding CP is the emotional component accompanying the disability. My family made me as independent as possible, but there were many things that I was unable to be a part of because of having CP. The other kids often did not want me to be a part of something because of the CP, or did not understand what I was ABLE to do even with my CP.  In return, I lost much of my childhood while being excluded.

In my 20s, when most young adults were starting to make their mark and begin their adult lives, I fell short of the same goal. I did my fair share of young 20s stuff, but I needed to expand my 20s experiences at that time. As I neared the end of my twenties, I began to notice the disparity between my emotional and chronological ages. Chronologically, I was ready to do everything everyone my age was doing. Still, emotionally, I felt ten years behind everyone my age, mostly because I lacked the experiences of social interaction that would have defined and shaped my adulthood.

I was unsure whether I would be able to live independently. I had to learn about life, act the age I was chronologically, and accept who I was as a person with cerebral palsy. It was then that I started to see a therapist.  When I first started, it wasn’t hard to open up and talk. However, talking about the hard things and why I was going to a therapist was difficult. The therapist’s first suggestion was that if it was going to be hard to talk about at that moment, I should keep a journal so that when we met, I could bring it. I would be able to read from the journal, and it would make it easier for me to talk and more manageable for her to help.

Once we got through the first couple of weeks, she started with cognitive behavioral therapy (CBT, a talk therapy). CBT returned my thinking about life and living with a disability. If I could teach any younger person with CP or another physical disability, I would tell them that just because our bodies don’t work like our peers doesn’t mean we can’t ‘live like our peers’; it just might take some time and some modifications. While I have learned so much during this time, I still see a therapist because living with a disability will always be challenging. 

After getting the emotional and mental help I needed, I could see that just because I have cerebral palsy doesn’t mean I couldn’t live the life I wanted. Now that I was getting back on a more positive mental track and could see life in a new way, I was ready to move on with life. 

I was excited about moving on independently, but I had a major setback; I fell and broke my lower right leg. Healing would take six months to a year. Still, because of the cerebral palsy and spasms from the cerebral palsy, it kept breaking, so two years after multiple surgeries and two years ago, I was back where I started. 

After about two years of being back on my feet, I got hit with PsA (Psoriatic arthritis). It took almost a year to realize I had PsA. While having PsA, I couldn’t do anything without help because it interfered with my cerebral palsy. After spending over five years struggling with PsA, I just wanted to give up. The PsA went into remission, and I got a knee replacement. Having a knee replacement is a story within itself. ( If I ever were to write a book, it would take up a chapter or two.)

Again, after all this, I questioned if I could ever live independently. I tried not to get down on myself again, but it was hard not to. However, now I had some therapeutic tools to help me through this dark period of my life.  Having a long recovery from the knee replacement and making it through this difficult time with much more emotional education about myself, I was finally ready to move on with life.

Only a short time after this, my parents were getting older, and they also needed to allow me to be more independent.  My parents ALWAYS told me to be independent, and knew they needed to let me move on. They were still there to help and support me, because no matter what point in their life, they would always be there for me and knew how important my independence would be to me and my entire family.  

In late fall 2019, I listed my name on a few housing sites for senior and disability housing. A few months later, the pandemic started in the summer of 2020. Just as the world was closing, my world was opening up. Less than a year after applying for housing, I received a letter stating that an apartment was available and inquired if I would like to visit to see if it met my needs. 

My mom and I went to check it out, and it had a mom-and-pop grocery shop in the driveway. Other than that, I had sidewalks leading up to the center of town where there were places to eat, coffee shops, banks, and more than I would need every day, and all I would have to do was walk less than half a mile. So I took it.

I was able to move in at the end of that summer. Seeing the world closed down, my idea of leaving wasn’t what I had in mind. When my family moved me in, it was as if they had left and locked me in to be myself. Due to the pandemic, no one could visit, so I was only with my family. I couldn’t have face-to-face contact with other friends, so I relied on social media and Zoom sessions.

The first year and a half of my life were tranquil due to the pandemic, and I could only have family members.  

I would have thought I would have felt lost being alone for that amount of time, but no, because all the CBT training had helped; I had a mental toolbox of tricks to use. One of my most significant activities was to return to my writing. When I started writing years ago, it was about things that did not matter or only mattered at that moment. I was able to do a lot of soul-searching and fully accept who I was, recognizing what I had overcome to get where I am today.
Life is a challenge for everyone, from start to finish. I have finally learned at this time in my life that I should not waste time worrying about things I cannot control. Instead, enjoy the moments I have to share with family and friends and make the most of them. Not to look at my life through my disability and limitations, but remember how far I have come and live my best life independently, never forgetting the people who love and support me, no matter what.

Disability

EMBRACING THE WEAKS PARTS OF MYSELF

OUR BEAUTIFUL CHALLENGES

I have been working on myself for the last couple of months. I know that the more weight I have on myself, the more the CP takes over, and the less independent I become. I hate to admit it, but I did go on a drug to help with another health issue, and it helps with my hunger craving. While this isn’t the end-all to my weight issues, being on the drug has slowed me down from overeating.

My weight is one of the weaker parts of who I am. I want to acknowledge and improve the areas of myself that need improvement, and strengthen them. My cerebral palsy was the weakest part of me. I thought I was stuck feeling that way for the rest of my life. Then, something clicked in me: If I befriended the weaker parts of myself, I could start to trust and embrace them. The first place to start was my disability. I had to merge who I was with who I wanted to be. It took me most of my life to realize that I had to overcome my challenges. Once I found strength, I started to feel free. By embracing my disability, I became best friends with this side of myself. I would now like to become friends with my weight.

It didn’t take overnight to become friends with my disability; it was a long process, just as it will be a long process to be comfortable with my weight. I know I need to be a healthy weight to help me maintain independence. I have lost a small amount already because I can get dressed better and my clothes are more comfortable; this is a small step. Steps are better than a big leap because no matter how long they take, they build the foundation for the outcome.

After building the foundation for losing weight, I also need to create a foundation for living on a budget. Life is getting so expensive, and like so many on disability, I live on a small budget. 

I have never been good with money. The next diet I need to go on is a financial diet. I’m now trying to learn how to make a budget that I can stick to. It has been hard because it means cutting out luxuries that make me feel happy, like going out to lunch or getting an iced hot chocolate. Although I miss these things, the real reward is that I’m saving money and I’m cooking at home, making healthier choices.

It’s not just about one thing here and there, but about all of these things added up. Every day that my clothes fit better and I have more mobility is a success. Every day that I can enjoy a walk (for free) or cook a meal at home is a success. Over time, all of these small victories add up to give me control over my life.

Disability

HOW PEOPLE SEE ME…BUT WHO I TRULY AM

OUR BEAUTIFUL CHALLENGES

What I am not is the first thing you see.

What I am not is the six legs I used to walk around.

What I am not is the handlebars I hold onto.

What I am not is what you see when I walk into a room.

What I am not is the way you see me on the outside.

What I am is a person who is just like you.

What I am is someone with self-worth.

What I am is someone with intelligence.

What I am is someone with dreams.

What I am is someone with hopes.

What I am not like another person with a disability that you know

What I am not is the label that I was born with

What I am not is your inspiration

What I am not the only person in the room with a walker.

What I am not is taking up space in life.

What I am not is letting my disability stop me.

What I am not is letting my disability affect how I live life.

What I am not is allowing myself to give up on myself.

What I am not is letting my challenges get in my way.

What I am not is letting my fears get in the way.

What I am is a creative person.

What I am is someone who gives love.

What I am is someone who receives love.

What I am is someone who loves life.

What I am is what you see, what you see in me. That is what is called judging what you are visiting with your eyes. When you judge with your eyes, you miss out on life because life is much more than what you see on the outside. When you remove the walker and the disability, all that is a person, just like you.

Disability

THE CHALLENGES INBETWEEN OUR CHALLENGES

OUR BEAUTIFUL CHALLENGES

I want to encourage everyone to love themselves. To love ourselves and our lives with disabilities, we need to understand our disabilities and how to work with them, not against them. Even though you see your disability as a weakness, it should be one of your best friends. You will be companions for life. Even the best roommates sometimes quarrel, but you work through the challenges.- Marie W.O.W.C.P.

A question I often get is, “How do I do all that I do?” Then they explain they wouldn’t know if they could do what I do if they had my challenges. I tell them that they will find a way to do their best, and you can go beyond that, just because I don’t mean I want to give up the life I was given because of your challenges. Something my family instilled in me is the strength they have. There are times when I would like to give up. When I feel like I want to give up, I kick myself in the behind.  I was taught never to give up on myself. I was also taught that if there is a challenge in my way, never give up on myself or the challenge. 

The challenges I was given have been the fuel that has kept me going throughout life. Yes, there have been times when I have forgotten to add fuel. I try not to fear life and strive not to give up; what helps me is my spirit. My fighting spirit has also seen me through my challenges. Not many people have a fighting spirit, but I was born with one.

If someone had asked me years ago how to describe my disability and the challenges that it gave me, I would have said it was the one part of me that I wished I could get rid of. If you asked me today what I would say about my disability, I would say it is the one thing that empowers me. So what happened between then and now? 

Life is challenging with cerebral palsy, but what about the challenges that arise between those challenges? Such as adding the life stressor that everyone experiences, whether they are disabled or not. These are the most challenging times for me. I am equipped for life with a disability. Still, it’s the life challenges that are woven into those everyday challenges that I wasn’t prepared for—the aging with CP, getting other genetic disabilities, and illness. Then there are life stressors, which I know none of us are ready for, but for those who already have stressors of their own, the added ones I wasn’t equipped for. I have always been equipped to handle the things that came with having CP, such as the challenges of the spasms, learning to walk, the falls, the breaks, the surgeries, the therapies, and making sure people know I’m more than my disability.

 I needed to learn how to control my emotions. People don’t talk about the emotional side of having CP. While people with CP have normal mental abilities, there are times when it doesn’t seem like it to me. As much as my parents never held back from events, it was still because there were milestones that you have as a child, a teen, or a young adult that I missed out on due to CP or being sheltered from things in life because of the CP. Those times added to my stress because they were the times when I felt different.

Adding unnecessary stress to myself not only made me feel different, but it also made my CP act up, which caused it to throw me off balance and make me fall.  

Sometimes I can’t help but feel stressed by things like ensuring I have enough money to live on, reading or watching the news, and having the PCA I need. As much as I love being independent, the challenges weren’t what I thought they would be.

With all the small challenges between the more significant ones, it’s still worth knowing that no matter what challenges I might face, they are still worth overcoming.