The Hidden Grief of Losing Independence Through Vision Changes or Disability

There is a kind of grief that often goes unrecognized.

It is not always tied to death.
It does not always arrive all at once.
And many people experiencing it do not even realize they are grieving until years later.

Sometimes grief arrives through loss of independence.

For me, that loss came during one of the most emotionally chaotic seasons of my life.

I got married, found out I was pregnant a month later, and then — just two weeks after learning I was pregnant — I was declared legally blind.

In many ways, I was robbed of the joy that most mothers get to experience during pregnancy.

Most expectant mothers get time to sit in excitement and possibility. They imagine what their child will look like, who they will become, what kind of parent they hope to be. There is anticipation, planning, daydreaming, and wonder.

I had about two weeks of that.

The rest was fear.

How am I going to do this?
How will I get to my own doctor appointments during pregnancy?
How will I get my child to appointments one day if he needs them?
Why am I still paying for a car sitting in the driveway that I can no longer drive?
This does not make sense.
This is not fair.

My mind became an endless cycle of “What about…” and “What if…”

That was what my pregnancy looked like.

I lived far from family and had very little support. My marriage was deeply unstable, though at the time I barely had the emotional bandwidth to process that reality. My then-husband went to work each day while I stayed home alone with a screaming infant, trying to navigate motherhood while simultaneously grieving a life I no longer recognized.

I remember standing at the window and staring into the driveway at my car — the car I still had payments on, but could no longer drive.

That image has stayed with me for years.

Other parents could put their babies in the car and drive around for a change of scenery or to soothe a restless child. They could run errands freely, leave the house spontaneously, or simply escape the walls for a little while when the day became too heavy.

I could not.

Walks were okay, but isolating. There were no other mothers nearby. No support system waiting around the corner. No village. Just long days that blurred together while I silently tried to adapt to losing my autonomy, my independence, and much of my identity all at once.

There was grief in that too.

Grief in realizing that motherhood was not going to look the way I had imagined. Grief in watching other mothers move through the world with freedoms I no longer had. Grief in not having family nearby to lean on. Grief in lacking the kind of community and support that so many mothers desperately need, especially during early motherhood.

At the time, I did not fully understand what I was experiencing.

In hindsight, I can now clearly see that I was grieving.

I had not just lost my driver’s license.
I had lost freedom.
Choice.
Mobility.
Confidence.
Connection to the outside world.

And because so much was happening at once, I did not even recognize how deeply that loss was affecting me emotionally.

That period of my life fundamentally changed how I understand overwhelm, isolation, and the invisible emotional weight people carry.

I will pause here to say something important: that child is about to turn 17 years old, and I made it through.

I made it through because I had no choice if I wanted to be any kind of example to him.

Do I still occasionally have moments of self-pity? Of course. Those moments are rare now, but they still surface from time to time. I also have to honestly acknowledge that I did not get to be the parent I originally envisioned myself being, and there were moments when my own grief and chronic tension inevitably affected my parenting.

There is grief in that realization too.

There is grief in recognizing that disability can shape not only your own life, but also the way your children experience childhood. There is grief in realizing that exhaustion, stress, isolation, and survival mode sometimes take up space where you once imagined more ease, patience, freedom, or joy would live.

But my son also grew up watching a strong mother continue doing many of the same things other people do — just sometimes differently, and with limitations here and there.

And he has become an incredible human being with a deep capacity for empathy, patience, and understanding.

I truly believe that my disability helped shape some of those qualities in him.

Within the limitations we faced, he was given a unique perspective on resilience, adaptation, and compassion from a very young age. And honestly, if growing up with a disabled mother does not make for a compelling college essay someday, I do not know what will.

One of the hardest things about disability, chronic illness, or vision loss is that the grief is often invisible to everyone else.

People see the practical accommodations:
the cane, the magnifier, the transportation challenges, the schedule adjustments.

What they often do not see is the emotional exhaustion underneath it all.

The constant adapting.

The mental calculations.

The loss of spontaneity.

The fear of becoming dependent.

The loneliness that can come from feeling misunderstood.

Disability grief is rarely about one singular loss. It branches outward into every area of life it touches. Sometimes you are not only grieving the disability itself, but also the experiences, identities, relationships, freedoms, and imagined futures that changed alongside it.

There is also a quiet identity shift that happens when your world suddenly becomes smaller. Many people begin questioning their worth because our culture places so much value on independence and productivity.

But needing support is not failure.

Needing accommodations is not weakness.

And grieving what you have lost does not mean you are ungrateful for what remains.

Those things can exist together.

In many ways, people navigating disability or major life limitations become incredibly resilient. They learn how to problem-solve constantly. They adapt in ways most people never have to think about. But resilience can also make pain harder for others to recognize.

Sometimes capable people are still struggling deeply.

Sometimes functioning is not the same thing as flourishing.

And sometimes the most powerful thing another human being can offer is simple understanding.

Not pity.
Not forced positivity.
Not being treated as inspirational simply for surviving.

Just understanding.

Because when people feel understood, shame begins to loosen its grip. Isolation softens. And healing becomes more possible.

If you are navigating vision loss, disability, chronic overwhelm, or any life circumstance that has changed your relationship with independence, you are not weak for struggling emotionally with those changes.

Loss deserves acknowledgment.

Adjustment takes time.

And even when life no longer looks the way you once imagined, it is still possible to create meaning, connection, purpose, and forward movement from where you are now.

Growth is rarely linear.
Neither is grief.

being a parent with a visual disability

I was declared legally blind two weeks after finding out I was pregnant with my first child.

Some moments in life split you into a before and an after. That was one of them.

Pregnancy is often framed as a season of anticipation and joy. For me, it was both joyful and tumultuous — filled with fear, uncertainty, and a profound sense of isolation. I lived an hour away from family and friends, had no meaningful emotional or logistical support, and had very few resources to help me navigate both pregnancy and vision loss.

I had been diagnosed with Stargardt’s Disease at age ten or eleven, and connected with the Bureau of Education & Services for the Blind (BESB) back then. At the time, I didn’t need their services, because I still had plenty of vision. But suddenly, at 27, I did — and fast. Pregnancy compounded that shift.

When my baby arrived, I started to feel trapped in my home. Walks were possible, but that was about it. I realized my favorite health food store was within walking distance — something I never considered when I could drive. That became my small excursion, though that meant spending money. Simple parenting conveniences that most take for granted — driving a baby around until they fell asleep, trips to the park or the store, even a spontaneous visit to the beach, or to see Grandma— were no longer possible without significant planning, coordination, and help.

Even being outside with my child brought new anxieties. On weekends when rides were available, I could take him to the playground, but I couldn’t actually see him. Shapes and movements, not faces or expressions — every cry or scream made my heart race: was that my child? Was he okay? I had to stay close, which might have looked like helicopter parenting to an observer, but in reality, it was survival. I simply could not rely on sight to ensure his safety.

We eventually moved closer to family, which helped slightly, though life didn’t magically become easy — people have their own schedules, priorities, and limitations. Then came the second child, along with dance, acting, and school sports. Transportation became a constant challenge. Schools had no solutions because my disability wasn’t theirs to manage, but my limitations still affected my kids’ participation. Statistically, tens of thousands of adults aged 21–64 in my state alone have a significant vision impairment. These are the adult “working years” — family building years — and there are very few systems in place to support parents navigating these times. I have spent collective days on the phone with countless organizations seeking help to get me and my kids out and involved in life. But there would always be something that disallowed qualification. Largely, it was the fact that I had kids to begin with - they are considered a liability in organizations’ vehicles. Not only that, most organizations (in my area) help get you to doctors appointments, and one shopping plaza nearby. Well, what about my kids? What about an enriched life? What about getting them to the local concert on the green? To story time at the library? To get an ice cream cone? Being disabled does not mean that we are now reduced to only being able to have basic human needs met - we still want, and deserve, to engage in life just as everyone else does, and the fact that it affects the children of the disabled is a problem that needs fixing. To this pint, ride shares are of course a wonderful addition to our modern world, however, to the disable community that are on disability income, that is not a financial option.

Fast forward to my first born turning 16 and getting a driver’s license — a milestone every parent anticipates, but one that brought a new layer of logistical complexity. Because I cannot obtain a license, car insurance had to be placed in my son’s name. In our state, there is no alternative, which made the cost astronomical. Countless hours were spent on the phone with insurance companies, only to hear the same “state law” explanation over and over. What should have been an exciting transition became a stressful ordeal — and this is just one example of the unseen burdens parents with disabilities navigate.

As time has gone on and my vision has further degraded, even something as simple as a walk alone has become risky. On one outing, I twisted my ankle in a pothole I couldn’t see, fell, and narrowly avoided a passing car. Walking with my younger child is possible, but I am constantly balancing independence, safety, and the need to ensure my kids understand my limitations without ever feeling responsible for them.

Over the years, I’ve built a network of support: friends, neighbors, even a nearby church offering transportation assistance despite no formal affiliation. I’ve learned to communicate openly about my limitations and advocate for creative solutions. I’ve found ways to watch performances from backstage, attend games with binoculars, no matter how close I was and how ridiculous it looks to others, and ensure my kids’ participation while honoring my own boundaries.

Even with strategies, stress, fear, and heartbreak remain part of the equation. I can’t always see what’s happening inside or outside. I’ve lost count of how many times my children were reprimanded for things I thought were happening — and weren’t. Being a parent with a disability demands constant adaptation, communication, and reflection.

These are realities few consider, which only feeds the isolation that often accompanies parenting with a disability.

This is why small talk rarely feels meaningful to me — I don’t want to hear about your day at work or talk about the weather. I want depth. I want to know what brings you joy, what challenges you, and how you navigate your own limitations. I want to know how we can open our eyes a little further — together.

I carry no shame around my disability. I’m an open book. I share these experiences to hopefully influence a shift in thinking about disability, parenting, and community. To remind anyone navigating similar circumstances: you are not alone, your challenges are real, and your contributions — as a parent, advocate, and human being — are valid.

Parenting with a disability is demanding, sometimes heartbreaking, and always instructive. It teaches resilience, creativity, empathy, and above all, the importance of community. It reminds us that independence is a spectrum, and asking for help is not weakness — it is wisdom. And your children are learning such incredible life skills watching you do what you do. It may be by default, but that does not take away from how powerful it is that you are raising aware, compassionate, patient, kind, autonomous, pays-attention-to-details human. That is who you are putting into this world.

The numbers of parents with disabilities are greater than most realize. And if we shift our thinking, advocate for systems that recognize these challenges, and acknowledge the nuance of lived experience, we can begin to transform not just how we parent, but how society supports those of us doing the work of raising children while navigating life differently.

Reflection & Action: Navigating Parenthood With a Disability

Parenting with a disability can feel isolating and overwhelming, but there are strategies and perspectives that help lighten the load while fostering confidence, connection, and resilience.

Reflection Prompts

Take a moment to journal or discuss these questions with a trusted friend or coach:

1. What are the tasks or moments in parenting that currently feel most challenging for me?

2. Where might I ask for help — even small ways — that I haven’t considered?

3. How do I notice my own stress and frustration when managing my limitations? How can I address it before it affects my children?

4. Which community connections (friends, neighbors, local organizations) might I nurture or create to provide support?

5. How do I model adaptation, flexibility, and problem-solving for my children?

6. What assumptions about independence and “doing it alone” am I ready to release?

Practical Steps

1. Build your support network intentionally. Identify people, organizations, or resources that can assist with transportation, childcare, errands, or school activities. Even occasional support can make a big difference.

2. Communicate your needs clearly. Let teachers, coaches, and other parents know about your limitations and the ways they can help. Early, honest communication reduces misunderstandings and stress.

3. Leverage technology and adaptive tools. Screen readers, mobility apps, smart devices, and organizational tools can create independence and streamline daily tasks.

4. Create “safe spaces” for your children. Whether it’s a playground strategy, classroom plan, or home routine, consider how you can ensure their safety while honoring your abilities.

5. Celebrate small wins. Every successful outing, performance attended, or challenge navigated is progress. Recognize and acknowledge your efforts, not just the outcomes.

6. Practice self-compassion. You are learning constantly. Mistakes and setbacks are inevitable — but they are not failure.

7. Be open and honest with your children about your disability. Explain, in age-appropriate ways, what your limitations are and why certain tasks may require adaptation or assistance. This empowers your children to ask questions, develop understanding, and recognize the barriers you face — all while fostering empathy, problem-solving skills, and a collaborative family dynamic.

Invitation

Parenting with a disability requires advocacy, creativity, and courage. Your experience can also open doors for greater awareness and systemic change. By reflecting, asking for support, and modeling resilience, you are not just navigating your child’s world — you are shaping a more inclusive future for families like yours.

Asking for help is a skill

Somewhere along the way, independence became a badge of honor.

We celebrate the person who “does it all.”
We admire the one who never needs anything.
We quietly absorb the message that if we were stronger, smarter, more capable — we wouldn’t need help.

And so asking for help becomes something else entirely.
It becomes weakness.
It becomes embarrassment.
It becomes something to avoid.

I find this both fascinating and sad.

There is real pride in accomplishing things on our own. Growth requires effort. Mastery requires persistence. But our cultural admiration for independence has quietly drifted into something more isolating — a belief that we shouldn’t need anyone.

When I was 27, I was declared legally blind due to an eye disease that is known to worsen at that stage of life. I lost the ability to drive. I began noticing changes in what I could and could not see. Ordinary tasks were becaming complicated.

And very quickly, asking for help stopped being philosophical. It became necessary.

I had to ask strangers in the grocery store to read labels.
I had to ask for rides.
I had to acknowledge, publicly and repeatedly, that I could not do certain things alone.

The first few times were uncomfortable. I felt exposed. I felt embarrassed. I had to work through my own internalized belief that I “shouldn’t” need help.

But here is what surprised me:

Every single person I asked helped me.

Not reluctantly.
Not with irritation.
Not with judgment.

They were happy to help.

Over time, something shifted. I stopped asking sheepishly. I stopped feeling like a victim of circumstance. I began to ask with a little humor. A little lightness. A quiet confidence.

And something else became clear: I wasn’t as alone as I had feared.

Around that same time, I began noticing how others asked for help. There would be hemming and hawing. Long periods of struggling alone. Statements like, “I shouldn’t have to ask for help,” or “I’ll figure it out.”

It struck me — asking for help had become a last resort instead of a normal human exchange.

We’ve been taught that our lives are solely up to us to figure out. And yes… we are responsible for our lives.

But I offer a gentle “yes… and…”

Yes, we are responsible.
And we are also allowed to receive.

Yes, self-reliance is powerful.
And so is community.

Yes, we can figure things out.
And we can do it faster, lighter, and with more connection when we allow support.

One unexpected gift of vision loss was the development of intuition. You learn to sense who is safe. You learn to read tone, posture, energy. While there are certainly questionable people in the world, the vast majority are good. Most people feel meaningful when they get to be helpful. It allows them to participate in something larger than themselves.

When we refuse help out of pride, we don’t just isolate ourselves — we rob others of the opportunity to contribute.

Asking for help is not passive.
It is not weakness.
It is advocacy.

It says:

• I know what I need.

• I am not afraid to speak it.

• I trust that support exists.

• I belong here and it’s ok to take up space.

When you allow yourself to ask, something inside relaxes. Your nervous system softens. You stop white-knuckling everything. You begin to experience the world as something you are participating in — not battling alone.

Asking for help is not surrendering your strength.

It is refining it.

It is a skill.
And like any skill, it can be practiced.

Start small.
Notice the language you use internally when you need something.
Catch the “I shouldn’t have to…” thoughts.
Experiment with asking clearly, directly, and without apology.

You might be surprised at what happens.

You might discover that support was never as far away as you thought.

Asking for help is not a weakness.

It is a superpower.

And sometimes, it is the very thing that guides you inward — so you can move forward.

There is always a way

If you had told me years ago that I would be here — building a coaching practice rooted in clarity, courage, and forward movement — I would have believed you.

But I would not have understood what it would require.

This dream has not unfolded in a straight line.
It has unfolded in layers.

There have been seasons of momentum and seasons of stillness. Seasons of confidence and seasons where doubt crept in quietly and tried to convince me that maybe this wasn’t the right time… or the right path… or the right version of me.

Outside voices can be loud.
Expectations can be heavy.
Practicality can feel persuasive.

And yet — beneath all of that — there has always been something steady.

A knowing.

A sense that there is always a way.

Not always the obvious way.
Not always the easy way.
But a way forward nonetheless.

What I’ve learned is that perseverance isn’t dramatic. It isn’t one bold leap or one breakthrough moment. It’s the quiet decision to continue. To refine the vision instead of abandoning it. To adjust the approach without releasing the dream.

Sometimes moving forward requires a new strategy.
Sometimes it requires patience.
Sometimes it requires looking inward long enough to see what we couldn’t see before.

There were moments I could have convinced myself to shrink the vision. To soften it. To file it away as something that was once meaningful.

But every time I paused and truly listened — not to the noise, but to the deeper voice within — the message was the same:

Keep going.

Forward action does not require certainty.
It requires trust.

Trust that even if the path bends, it still leads somewhere.
Trust that doubt is not direction.
Trust that vision often asks more of us before it reveals what it’s building in us.

Building this business has required resilience. It has required me to stay aligned when it would have been easier to drift. It has required me to believe that clarity comes not from quitting when things feel unclear, but from looking again.

And that is the heart of my work.

We think we’re stuck.
We think the path has ended.
We think the door is closed.

But often, what we need is not a new dream — we need a new way of seeing.

There is always a way.

It may require courage.
It may require reinvention.
It may require quiet strength no one else sees.

But if you are willing to keep moving — even slowly — and stay connected to the deeper truth inside you, the way will reveal itself.

I am living proof.

And I am still walking it.

Make room for growth by redefining success & turning intention into action

Confidence doesn’t always arrive with a bold entrance. Sometimes, it builds quietly, step by step, as we show up for ourselves day after day. It grows when we choose to try, even when we’re unsure of the outcome. Every time you take action despite self-doubt, you reinforce the belief that you’re capable. Confidence isn’t about having all the answers — it’s about trusting that you can figure it out along the way.

The key to making things happen isn’t waiting for the perfect moment; it’s starting with what you have, where you are. Big goals can feel overwhelming when viewed all at once, but momentum builds through small, consistent action. Whether you’re working toward a personal milestone or a professional dream, progress comes from showing up — not perfectly, but consistently. Action creates clarity, and over time, those steps forward add up to something real.

You don’t need to be fearless to reach your goals, you just need to be willing. Willing to try, willing to learn, and willing to believe that you’re capable of more than you know. The road may not always be smooth, but growth rarely is. What matters most is that you keep going, keep learning, and keep believing in the version of yourself you’re becoming.