For me, this shift became even clearer after I finally decided to pursue my dream of becoming a mother. I wish I could say my journey to motherhood was born from a beautiful, uncomplicated love story, but that has not been my story thus far. I hate to say it, but the biggest motivating factor was that I was completely done with the ghetto ass experiences dating had to offer women like me.

There is only so much you can do, or should have to do, to convince anyone of your value, desirability, softness, or worthiness to be loved well. For my own emotional well-being, I could no longer negotiate with people who wanted access to me without demonstrating the maturity, discipline, or care required to maintain that access. And most importantly, I do not negotiate with terrorists.

For a long time, I tried to color inside the lines and follow the traditional order of how relationships work. Date. Fall in love. Get married. Build a life together. Have a baby. For a while, I probably did believe that if I was patient, accommodating, feminine, successful but not too successful, and predictable enough, the right man would eventually show up and, in the words of Common, one day it’ll all make sense.

For plenty of women, it does eventually play out that way. Nonetheless, dating in my thirties made it hard to be a believer.

It is not even bad dates. I have been fortunate enough to have had more fantastic dates than bad ones. More so, it is the emotional labor of explaining yourself over and over again to different men like a boring rerun of M*A*S*H on a Saturday morning. Feeling like you are always auditioning for basic respect, transparency, and consistency. Far too many of them want access to your softness without earning your trust, reaping the benefits of your presence, your body, your entertainment, and your stability without demonstrating that they have good intentions for you.

At some point, I had to ask myself how much more emotional manipulation and neglect would be worth tolerating for a chance at a “traditional” kind of family. Could I continue to delay my dreams for fleeting vibes from men who would not handle me with any type of urgency, care, or seriousness?

For many years, I knew I wanted to be a mother. And I genuinely tried to “do it the right way” plenty of times, pushing through love bombing, being used and lied to, and being tossed aside by men I loved deeply once things got too challenging, when I asked too many questions, or when I expected too much transparency and consistency.

Of course, it is a given that I have never stopped desiring love and connection. I still ponder over partnership periodically. It is a blessing when it is done intentionally. There are brief moments in my life where I have known those peaceful moments of building a life with someone who sees you, chooses you, and protects you. I suppose if these moments happened once, they could happen again.

Wanting love and waiting indefinitely for it are not the same thing.

For a lot of women, especially Black women, the message is that we should keep waiting. Wait to be chosen. Wait for him to mature. Wait for the ring. Wait for permission to build the life we have always known we wanted.

After a while, waiting for permission to exist wholly as myself was no longer tenable.

Choosing motherhood on my own terms was not a statement on men and their utility. But if that’s what anyone takes from my decision, that’s fine, too. I chose not to allow the outcome of my life to be dependent on whether a man was self-actualized enough to love me intentionally. I looked at the life I wanted, the options I actually had, and the reality of time, biology, and my own impatience.

The grief underneath it all

There is grief in accepting that the fairytale ending may not exist in the way you had expected. You can be proud of betting on yourself while still wondering why things could not play out “normally” for once.

At the same time, the other side of that grief is freedom. There is freedom in no longer feeling pressed to convince men that you are tolerable and worthy. Freedom in celebrating how motherhood, family, and love can look however you want them to. Your story is still meaningful even if it does not follow a traditional sequence.

Becoming a mother did not necessarily change anything about my outlook on love, but it did give me plenty of new ideas to consider.

I became more aware of what a partnership would have to offer to make sense in my life. I am far less tolerant of dreamers and their cunning way with words. Actions matter far more, and I am slightly more discerning about the difference between being desired, being needed, and being considered.

After all the responsibilities I have had to carry and sacrifices I have had to make as a special needs and medical mom, a romantic relationship cannot be another place where I have to shrink, coddle, walk on eggshells, and perform gratitude in exchange for the bare minimum.

My romance has to be protective, both emotionally and physically. It’s built on honesty. And most importantly, it has to bring peace. My last relationship was riddled with emotional and psychological dysfunction that has left my nervous system fried to the max. I am never going back to that.

Now, I only have room for the kind of love that makes life safer, softer, and lighter. That should not be asking for too much. It only sounds like too much in a culture that has trained women to be grateful for so little.

My life belongs to me

For me, getting off the struggle bus did not mean I turned away from love. If anything, single motherhood gave me a perspective that did not rely so heavily on convincing a man to commit to a serious relationship he clearly was not interested in with me.

In reality, I just decided to get off the bus because I was tired of pretending it was taking me somewhere.

Keep Reading

If this post resonates with you, visit Motherhood, Culture & Identity for more essays on Black motherhood, caregiving, identity, relationships, and the parts of motherhood that are rarely discussed.

As I reflect on my 30s, I’ve learned that my peace is worth protecting, and some doors absolutely have to stay closed. After surviving two decades of emotional neglect, deception, and manipulation, I’ve been forced to accept that not everyone deserves unfettered access to me.

My peace is worth protecting, and some doors absolutely have to stay closed.

After years of sacrifice and putting men’s desires (and egos) ahead of my own, I’m finally able to embrace higher standards and firmer boundaries. Maybe it’s because I’m (mostly) financially stable or because I have the son I always wanted. But honestly, it’s probably just the fact that I’m plain ole exhausted. From surviving capitalism, the constraints of patriarchy, dating apps, “talking” stages, love bombing, meeting someone cool, and hoping maybe this will finally be it.

Some days certainly come easier than others, but all I know is I’m no longer willing to compromise my mental and emotional well-being for fleeting moments of companionship, validation, or attention.

All that being said, this series is Part 1 of Five Things I’m Not Apologizing for at My Big Age.

He Has to Be Better Than My Peace

As a successful Black woman, I am done defending my preferences. For anything, really, but especially when it comes to romantic partnership.

What does that actually mean?

It means no more dating “potential.” No more Build-A-Bear in this bitch! My last partner didn’t even have a bank account when he met me. Safe to say, I’m done serving my time!

No more dating potential

• Obviously, he doesn’t have to be a millionaire, but he should be goal-directed and have a sense of purpose. Ideally, he should also have his own support system.

Kindness and transparency are the bare minimum

• Genuine kindness, not the transactional kind where you want something in return. Does he say what he means and mean what he says? Is he mentally and financially grounded?

Integrity matters

• Are his interactions with women steeped in integrity? Does he face his own problems and take accountability for his missteps?

The notion that a Black woman would expect a self-sufficient partner seems to make some people uncomfortable, or downright angry. Some will be quick to assume it’s about money, status, or “things.” I wish it were that simple. I have all of those (and then some).

At this point in my life, there just isn’t space for a romantic partner who hasn’t figured some of this shit out. My roles as a mom, head of household, employer, and full-time health care worker are burdensome enough. Two-thirds of my day is already consumed by managing my personal and professional responsibilities, solving other people’s problems, handling them with kid gloves, and carrying the never-ending mental load of parenting a child with disabilities.

There just isn’t space for a romantic partner who hasn’t figured some of this shit out.

As I reflect on my last relationship while I try my best to heal, I still have no idea how I did it all without losing my shit. Not even once. Not even at the very end, when my self-centered borracho of an ex was determined not to leave a home in which he’d never paid a SINGLE bill. For some reason, the most emotionally devastating experiences often leave us with the biggest life lessons.

When I tell you I’m never going back to any part of my old life, I mean it. The life where, as a young woman, I ignored red flags and explained them away. Convinced myself they weren’t relevant because we have a great time when we’re together anyway.

Now, having standards means following my instincts. Asking the hard questions even when it’s uncomfortable. The ones where you find out you’re probably the side chick. Yes, he’s messing with that girl who tagged him on Facebook, and no, he’s never going to marry you. But he will marry someone else eight months later. And no, he won’t tell you, but Instagram will.

THE LESSON

Yes, ALL of these men are emotionally stunted, and no, you shouldn’t help any of them learn to be a better human being.

Just wish them the best and send them on their way. Pray for them if that’s your kind of thing (but really, you should just pray for their partners, lol).

At the end of the day, it really is that simple.

Having the good common sense to walk away from a man who can pretty much take you or leave you? Unfortunately, that one’s much harder.

Save yourself some major pain and walk away forever.

READ MORE

This post is part of our Motherhood, Culture & Identity series, where we talk honestly about the intersections of motherhood, race, relationships, and the invisible labor women are forced to carry.

Motherhood, Culture & Identity

THE OVERLAP

The Journey I Was Never Prepared For

My son’s autism shapes how easily and effectively his asthma and hypopituitarism can be managed. These conditions don’t exist in isolation. They overlap in ways I never anticipated, and his doctors sometimes struggle to understand.

Oftentimes, there is no distinct hierarchy when it comes to medical diagnoses. In real life, each diagnosis shapes how the others show up:

1

Asthma

Affects breathing, sleep, activity tolerance, and vulnerability to respiratory viruses

2

Hypopituitarism

Affects growth, energy, the body’s stress response, and recovery from illness

3

Autism and Developmental Delay

Affect communication, emotional regulation, and daily independence

My son has hypopituitarism, a condition that requires regular lab work several times a year. But getting those labs done is never simple. He’s freakishly strong, stubborn, and resistant to blood draws. What should take five minutes often turns into a full-blown wrestling match. As he gets older, there have been a handful of times I’ve delayed his labs to the last minute out of sheer anxiety and exhaustion, knowing how traumatic the experience will be for both of us. I finally asked his developmental pediatrician to prescribe anti-anxiety medication just to make the process more tolerable.

BETWEEN THE LINES

It doesn’t stop there. When his asthma is triggered, emergency room visits often turn into me and two nurses holding him down for a nebulizer treatment. And then there’s our nightly routine with his growth hormone injections, which feels more like negotiating with a tiny, furious wrestler. While physicians see individual tasks: a lab draw, a nebulizer, an injection, they most often do not appreciate the emotional calculus required to make any of it happen.

WHAT HELPS

Strategies That Make Medical Care More Manageable

(Or at least that’s what they say, anyway...)

1

Prepare Before Procedures

Use visuals, social stories, countdowns, and comfort routines. Ask for a quiet room or child life support whenever possible.

2

Desensitize Gradually

Let your child explore equipment during calm moments. The mask, the stethoscope, the cuff. For some children, familiarity may reduce fear. My son became accustomed to the process thanks to a ton of YouTube videos about going to the doctor.

3

Offer Choice and Control

Even tiny decisions (“left arm or right arm?” “grape flavor or cherry?”) can build trust.

4

Pair Medication with Positive Routines

Music, screen time, or a favorite snack can turn compliance into habit. With my son, we like to chase each other around the house right before it’s time for his nightly shot.

5

Keep a “Medical Go-Bag”

Tablets, sensory toys, emergency meds, snacks, and a change of clothes. Keep a printed one-page medical summary if you need help keeping track of things.

6

Build Your Care Circle

If you can, prioritize finding providers or comprehensive care centers with experience in special needs and medical complexity. This is easier said than done, I know...

THE SYSTEM GAP

When Diagnoses Overlap, Systems Often Struggle

Intersectionality is often discussed in terms of identity, but it applies just as meaningfully to health and wellness. In my experience, managing multiple diagnoses just amplified the challenges.

My son’s autism and developmental delay shape how easily his medical care can be implemented. Treatments like nebulizers and inhalers that seem straightforward in theory are often difficult in practice due to his communication barriers and stubborn nature. His hypopituitarism affects how easily his body can respond to stress and illness. Sprinkle in a little asthma exacerbation during a particularly bad respiratory season, and even the most well-coordinated care can unravel quickly.

The Reality

Children with multiple chronic conditions don’t experience their diagnoses separately. Their care shouldn’t be separate either. Recognizing the reality families like ours face is what encouraged me to learn more about patient centered medical homes. Although medical homes may feel like a luxury, they really should be treated as an absolute necessity.

THE WEIGHT WE CARRY

The Invisible Labor of Caregiving in the Overlap

Caregivers raising children with multiple diagnoses carry an invisible workload. Many of us live with chronic anxiety because we are required to anticipate problems before they arise. We stay prepared for emergencies that may never happen. This has made traveling especially challenging for my family. We adapt our expectations, routines, and goals on a daily basis. Our expertise as medical parents develops out of necessity, not choice. Much of the weight we carry is invisible and, as a result, often goes unrecognized — particularly in the current anti-disability climate.

What families like ours need is proactive, integrated care that is flexible enough to adapt to our children’s needs, rather than systems that leave families scrambling to bridge the gaps.

Real Life, Real Kids was created to help families navigate those gaps with clarity, tools, and practical guidance when the system falls short.

NOTE: Some links in this post may be affiliate links. We may earn a small commission at no additional cost to you.

As a physician and the mother of a young child with autism, I have had far too many experiences with healthcare workers who are too busy, too proud, or too checked out to heed well-informed advice from those with more expertise. Most recently, when I took my son to the emergency department for a nasty virus that hit him hard, I told a nurse exactly what was going to happen, allowed him to dismiss me (my energy is precious!), and then watched exactly what I said was going to happen, happen.

It could really be anything. Drawing labs, administering medications. This time it was a nasal swab. I told the nurse we would need an extra set of hands to get it done. You know he didn’t listen.

You can imagine the rest. Some of you have probably lived the rest.

LIVED EXPERIENCE

What “Knowing Your Child” Actually Means

Mothers of children with special needs are not guessing. We are not being anxious. We are not overreacting. We’re not helicopter parents. We are telling you what we have learned from thousands of hours of lived experience. Trial and error, failed strategies, successful strategies, and intimate knowledge of one specific human being that few others have.

Say It Louder

When I tell you my son needs extra support for a simple procedure, you should consider it clinical information. The fact that it is coming from a mother and not a colleague does not change the value of the information.

(Now mind you, I am technically a colleague, but I don’t owe anyone that information.)

My son is not visibly autistic most of the time. His disability is real regardless of whether it is immediately apparent to a stranger. That is the definition of an invisible disability. And when providers skip over the context I offer because they don’t see obvious signs of a diagnosis, they are not being thorough. They were already not being thorough the moment they skipped the 10 to 20 seconds it takes to review a patient’s diagnosis list.

THE BIAS

The Ego Problem in Healthcare

Let’s name it plainly. There is a specific dynamic that happens when a mother, particularly a Black mother, offers practical guidance to certain male providers. The suggestion is not received as clinical information. It is received as a challenge that surely they are physically strong or smart enough to overcome.

This is not a minor problem. Research has documented for years that Black women are less likely to have their pain taken seriously and more likely to have concerns dismissed. I experienced it myself when my own pain was dismissed. What turned out to be preterm labor was brushed aside. This dynamic does not stop at the door of the exam room when we are there advocating for our children instead of ourselves.

This time I chose not go back and forth with this overconfident nurse. I actually cackled quietly on the inside, thinking...

I don’t argue with men who are wrong when I know what they’re going to see for themselves. I said what I needed to say. He made his choice. And naturally, my son gave him a run for his money.

While it shouldn’t feel like a win, it kind of did. Maybe for once that nurse learned to listen to mothers. I believe he did, since seven minutes later he came back with a second nurse to help take my son’s blood pressure. Nonetheless, this is not good patient care. My son and I had a harder experience than we needed to have. Resources and time were wasted. And the assumption that I could help hold him down may be too tall a task for some parents. Yet again, a provider decided his own confidence mattered more than a mother’s direct knowledge.

INVISIBLE DISABILITY

My Son Does Not Have to Prove Anything to the World

Autism and many other disabilities do not look a certain way. A child who presents as calm in triage (thanks, iPad!) can still become combative during the shortest of procedures. A child who is verbal can still struggle with sensory input. A child who has been cooperative all morning can still hit a limit the moment he is being held down for a lifesaving treatment.

As his mother and caregiver for four years, I know my son’s limitations. I know his triggers. I know his superhuman strength and I know which parts of the medical environment he doesn’t tolerate so well. I know this because I live it every single day, including twice a day when I give him his medications.

The Core Issue

When a provider dismisses that knowledge because he thinks he’s “got it,” he is confusing the absence of visible distress with the absence of need.

The Ask

What We Need from Healthcare Providers

This is not a complicated ask. Acknowledging a patient’s differences and their caregivers’ expertise comes down to a few things:

1

Treat a parent’s knowledge as clinical data

When a caregiver tells you how their child responds to procedures, adjust accordingly and act on it.

2

Ask questions before you assume

If you are unsure what accommodations a child might need, ask the person who is with them every day.

3

Leave your bias at the door

If your first instinct when a mother offers guidance is resistance instead of curiosity, that instinct is worth examining.

4

Invisible does not mean absent or invalid

Disability, pain, need, and overwhelm do not require performance or demonstration to be acknowledged.

FOR YOU

For the Caregivers Reading This

You are not exaggerating. You are not dramatic or anxious. You are not overstepping. You are the expert on your child’s needs, PERIODT!

You are allowed to say so. You are allowed to be firm. If you have the energy to do so, great. If not, that is fine too. You are allowed to document what happened, file a complaint with patient relations, or simply take note of who listened and who did not. The world we live in was not designed with disabled people in mind. That just means we must advocate louder, smarter, and always with receipts. You know your child. Do not let anyone convince you otherwise.

If you’re still figuring out how to navigate the system after a new diagnosis, you’re not alone.

Start Here

For parents raising disabled or medically complex children, workplace flexibility is not optional. It is the only way employment is even possible.

THE DISCONNECT

When Workplaces Are Not Designed for Caregiving Families

Many organizations believe they are flexible because they offer work from home days or promote an image of work-life balance. However, flexibility that only works when life is calm is not real flexibility.

In moments of crisis, parents end up negotiating every unexpected absence. They weigh whether disclosing more personal information will help or hurt them, and worry about being perceived as uncommitted rather than a valued employee.

THE TOLL

When Schedules Can’t Bend, Careers Break

Workplace flexibility also depends heavily on job type. Parents in administrative or remote-eligible roles may have more options than most. Caregivers who work in healthcare, education, service work, or shift-based jobs often do not. When schedules cannot bend, something else has to give (and it’s usually a parent’s career). Hours are reduced. Responsibilities are downgraded. Careers stall and families experience lost income and stability.

The Guilt

Beyond scheduling, this dynamic takes a significant emotional toll on caregivers. We carry guilt in every direction. Guilt for missing meetings. Guilt for missing deadlines. Guilt for missing critical experiences with our children. Many of us push through caregiver burnout because we fear losing life changing benefits like health insurance and disability insurance. Others leave careers for the sake of their mental health or to keep their home life functioning.

Over time, the message becomes clear: working a demanding career while also caring for a child with disabilities is not sustainable without meaningful support. Rigid work schedules and systemic gaps in childcare force working parents into impossible tradeoffs they never accounted for. These dynamics are highlighted throughout our Caregiving and Real Life collection.

WHAT IT SHOULD LOOK LIKE

What Real Workplace Flexibility Actually Looks Like

Real flexibility is not about favors or exceptions. It means evaluating performance based on outcomes, not uninterrupted availability. It means normalized time away without stigma or punishment.

Most importantly, it means believing parents when they say what they need.

BEYOND WORK

Support Beyond the Workplace

For families raising children with disabilities, caregiving is a long-term reality. Employers that recognize this retain skilled workers others lose. For employees with additional caregiving responsibilities, workplace flexibility is not optional. It is what makes meaningful employment possible.

Workplace flexibility reduces physical and emotional strain, but it cannot replace caregiving support systems. Explore our Caregiving Resource Directory for practical supports that reduce daily strain.

Browse Caregiving Support Resources

As a young adult, I never imagined adulthood would mean having to navigate life while carrying both grief and gratitude. That you could feel a deep sense of gratefulness for your beautiful, fulfilling life and still grieve the version of it you always imagined you would have. That you could be both courageous and emotionally defeated all at once. That choosing to prioritize yourself could be both the most empowering yet most painful decision you have ever made.

LOVE & LOSS

Romance Tends to Escape Some of Us

To say my romantic life has been difficult would be an understatement. For over 20 years, I have been emotionally abused and manipulated in nearly every relationship (situationship) I’ve been in. Never chosen or protected. And rarely ever shown the degree of love I release into the atmosphere. The men that I have allowed into my life were never mature enough to meet me where I am. Never truly showed up. Took the easy way out by ghosting, deceiving, and manipulating.

The first man I ever loved like he was a piece of me could never quite be faithful or choose me. In reality, at the end of the day, it is easy to see I was just the entertaining side piece. As far as I know, he eventually proposed to her (while still f*cking me, btw… to the very end!) Even to this day, that wound remains open and raw because I never dealt with it then… and still haven’t. Processing decisions that were done to you rather than made by you, is so so hard to digest. So I’m still in shock - every day. Objectively, I know I am bigger than this entanglement, and it doesn’t define my worth. But what you understand intellectually and what you feel deep in your heart are vastly different.

THE DECISION

So I Chose Me.

After two decades of waiting for a “good” man to step up and choose to build a life with me, I decided to chase my dreams anyway. And so I became a single mother via a sperm donor. When I reflect on that decision today, I appreciate how courageous it was. Financially, emotionally, mentally. I had to let go of the perfectly idealized family many of us envision, and instead authentically embrace the reality before me.

Choosing to be courageous, however, does not mean there’s no pain along the way.

It’s still hard to comprehend the fact that grief will probably always live somewhere deep within me. It doesn’t come on the holidays or big life milestones like you might expect. A joke you wish you could share together. A favorite phrase that rubbed off on you. A song you all loved. Flashbacks to brief moments of happiness. It’s grief for a meaningful partnership you’ve only experienced a few months at a time (gotta love the honeymoon phase).

I periodically grieve for the partnered life I imagined I would be living by now. It’s hard to swallow dreaming of a future with someone, and them deciding to build it with someone else. That sadness is valid. It’s raw and it cuts deep, right alongside the certainty I feel about my decision to start a family on my own. By no means is any of it easy... in fact, plenty of it has been downright awful.

REALITY

The Life I Actually Live

What I did not anticipate, beyond the well known challenges of raising a child as a single parent, was that my child would arrive so early and begin his life in what feels like an uphill battle sometimes. More than anything, I grieve the “normal” life most of us feel entitled to. Instead we got... Unexpected preterm labor. Medical neglect. An extended NICU stay. Chronic illness, developmental disabilities, multiple specialists. Two parent families often find the responsibilities of medical parenting daunting. Now imagine one mother in a demanding career, managing it all on her own.

That’s me.

The Weight of It

Many, if not most, single moms experience plenty of ‘Why Me?’ days. The burden of working parenthood feels like a bit too much sometimes. How do I manage our medical needs while simultaneously maintaining a full time career? The weight of that is heavy and it deserves to be acknowledged.

View Post: Life as the Default Parent

I have to reiterate, I am very blessed for the support system I have. I appreciate the stability and flexibility my job provides. But my gratitude does not eliminate the hard work, mental fortitude, and exhaustion that I push through every day. I am never going to bury my grievances so I seem grateful to the outside world.

PEACE

The Part I Cannot Reiterate Enough

I love being able to make every decision for my child without having to consider the input of a man who is ignorant, self centered, or manipulative. I love that our home is peaceful. I love that my child will never again have to witness the toxic environment of an emotionally abusive relationship. I will forever continue to choose me.

But I also want to win in my domestic life for once. I want to stop being the one carrying everything. I want a partner who actually shows up. And chooses to show up... consistently and selflessly. That doesn’t make me ungrateful. I know far too many Black working professional women who are perpetually single, unequally yoked, and pouring from an empty cup. We are expected to hold everything together and advocate for everyone else’s rights without ever being supported, loved, or empowered. We are either mismatched or we are unmatched. And yet we keep moving forward toward the best life we can build for ourselves.

STILL STANDING

This Is Still a Beautiful Mess of a Life

We often joke about “pick mes” and other women who are desperate to be chosen. But in a lot of ways it’s understandable. A man worthy of my love has yet to find me. I wish I could say I have made peace with that, but somedays I haven’t. Nonetheless, what grew from decades of being deceived, manipulated, and emotionally abused is a life I chose on purpose. A life that I get to be proud of. A career that allows me to help people in their darkest days. A version of myself I genuinely respect. And a child I would (and have to) go to the end of the Earth for. He wrecks my nerves, but he’s still mine!

Holding Grief and Gratitude

I’m satisfied with my choice to stop waiting for someone else to decide my life was worth investing in. I made that decision all on my own out of courage, and for that I am proud.

It’s possible one day our life will look different. If you can fall in love once, you can fall in love again, I suppose.

You Are Not Alone

No one should have to travel this journey alone. If you are still building your village, Growing Your Support Network as a Parent of a Child with Special Needs is a great place to start. When you are ready to connect with other caregiving families and support organizations, browse our advocacy resources and start building your team today.

On January 5, 2025, Bad Bunny released his sixth studio album, DeBÍ TiRAR MáS FOToS. Although Bad Bunny has been on my radar for quite some time, I have to admit I did not truly see the light until this album dropped. The nostalgia of DTMF was so healing at a time when it was clear dark days were ahead. Those of us struggling with the loss of loved ones or other cherished memories have found great solace in the warmth and community that DTMF celebrates.

Benito Antonio Martinez Ocasio is more than just the world’s most streamed artist. He is a fierce advocate for Puerto Rico, its people, and its hardships. For years Benito has showed us that vulnerability and strength can coexist. He is a powerful reminder that even in spaces where we have historically been marginalized, our oppression doesn’t define our potential.

As a Black woman of Cuban descent, I don’t take Bad Bunny’s commitment to taking up space lightly. His intentional use of his platform to advocate for his country and his people should be an inspiration to us all. Fighting for the humanity of everyday people, all while showing up as his authentic self, is the ultimate reflection of confidence and strength.

Chanclas and all, Benito serves as a fervent reminder to stand in your authenticity and dim your light for no one. You can deviate from the norm and still be respected. And exist unapologetically in rooms where people like you are hardly welcome and still be heard.

Leave your culture and identity at the door for NO ONE.

As I reflect on Bad Bunny’s rise to the top and the life changing year he’s had, there are five life lessons that often come to mind...

VULNERABILITY

Softness Is Not Weakness

Bad Bunny has never pretended to be something he is not. He has worn skirts and dresses on some of the biggest stages in the world. He has cried publicly (and often). He has written love songs that are tender and raw in a world that does not always make room for softness. In a society that thrives on toxic masculinity and aggression, Benito has chosen to just be himself, fully and unapologetically.

His authenticity moves me, because as Black women, vulnerability is often treated as a weakness. It’s a luxury that we’re rarely afforded. We’re expected to be strong, unshakeable, and unbothered at all times. No matter how much society forces these ideals on us, the notion of a Strong Black Woman is neither a compliment nor an aspiration. The rise of Bad Bunny serves as a constant reminder that staying true to yourself does not have to cost you your success.

TAKING UP SPACE

No Apologies, No Translations.

Bad Bunny’s halftime performance at Super Bowl LX was the first in history performed nearly entirely in Spanish. There were no English translations or closed captions. He did not soften his identity for the comfort of an audience that might not understand. Everything was intentional. Down to the azul celeste of the Puerto Rican flag, the color of the flag before the U.S. changed it in 1952. A quiet but deliberate declaration of Puerto Rican independence, on the biggest stage in American entertainment.

Puerto Rico: A National History

As people of color in White dominated spaces, we have all had to suppress our true selves at one time or another. Code switching at work. Softening how we communicate in certain spaces. Making ourselves more palatable and easier to digest. As a millennial Black woman in a conservative field of work, I’ve earned my place in every room, despite the times I’ve felt othered or unseen (or personally attacked as an unqualified DEI by the President and his minions).

PREPARATION

Stay Ready So You Don’t Have to Get Ready.

Bad Bunny did not stumble into global superstardom accidentally. He started posting his music on SoundCloud while working as a supermarket bagger. He probably knew he was creating something special before anyone else did. And by the time everyone else did too, he was already prepared for his moment.

For many of us, that kind of preparation is quiet. It doesn’t always look impressive from the outside. But it is rooted in faith that your moment will come and that you will be ready when it arrives. Especially as women, we are constantly told to wait our turn, to prove ourselves, to perform and earn the right to confidently talk our shit.

“A people without the knowledge of their past history, origin and culture is like a tree without roots.” — Marcus Garvey

COMMUNITY

Nobody Is Free Until Everybody Is Free

When we needed him most, Bad Bunny rose to the occasion and made historically prolific statements at both the 2026 Grammys and the Super Bowl. While clearly overcome with emotions, he opened his first Grammy acceptance speech with two words: “ICE out.”

In His Words

“We are not savages, we are not animals, we are not aliens, we are humans and we are Americans.”

At a time when many of us feel unseen and unheard, Benito didn’t wait for permission to criticize the American government for their heinous actions against immigrants and people of color. He led with love and reminded the rest of us to do the same. I’ll be the first to admit though, he is better than me!

Since the release of DTMF, Bad Bunny has frequently reminded us all of the importance of community. We celebrate together when things are good and show up for each other when things are hard. We should all use our platform and privilege in a similar fashion to speak up for the rights of our neighbors. Bad Bunny could have played it safe but he found the courage to be better. That is the energy Black women have always led with and it is the same energy we must continue to pour into each other and our children.

OUR STORY

The History Behind the Music

The timing of Bad Bunny’s Super Bowl performance almost feels divine. In my mind, El Apagón was the centerpiece for a reason. It delivers a history lesson wrapped in self confidence, bravado, and African rhythms, while also advocating for Puerto Ricans on the largest platforms in American entertainment. This performance arrived at a time when Cuba is also facing its own crippling blackouts, due to a fuel crisis compounded by six decades of the American embargo, and most recently the fuel blockade imposed by the current administration.

El Apagón tackles themes like gentrification and the chronic power outages that continue to devastate Caribbean islands like Puerto Rico and Cuba. Unfortunately, due to a lack of historical context, many viewers probably did not fully appreciate the piece’s symbolism. In merely two minutes Bad Bunny highlighted Puerto Rico’s colonization by the United States, the government’s catastrophic neglect during Hurricane Maria, and the continued displacement of Puerto Ricans from their own homeland. And that’s just for starters...

Old San Juan, 2021

Our Joy Is Political. Our Grief Is Too.

For people of color around the world, our history is the same. The joy, the resilience, the culture, the music, the food, the language. None of it is neutral, and none of it exists in a vacuum. Understanding the story behind our shared history gives us a much clearer vision of what we are collectively fighting to protect. In a political climate where anything non-White and non-conforming is under scrutiny, we cannot afford to forget our history. Not now. Not ever.

Explore Culture & Identity

Take Up Space. All of It.

I am grateful to Bad Bunny for reminding us that we don’t need to apologize for existing. I am grateful to him for showing men that they can be vulnerable and still be strong. For showing the world that being different doesn’t mean you won’t be respected. For reminding people of color we belong here and deserve to take up space in our own country. I plan to instill these lessons in my own son, because I appreciate his life as a Black boy living with disabilities will not always be easy.

Maybe one day the state of the world will look different (I certainly hope so). All I know for certain is that I am not waiting for permission to exist just as I am. Similar to my journey to motherhood, I’ve made that decision intentionally, and for that I am proud. Thank you, Benito Antonio Martinez Ocasio. Thank you for being brave enough to teach the world about your people and your values in the face of unwarranted hatred and oppression. Thank you for showing us what it looks like to change the world and love out loud.

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By the Numbers

The Stats Are Unhinged

According to Autism Speaks, it costs an average of $60,000 per year to raise a child with autism in the United States. Depending on your child’s needs, that number may even feel low. Lifetime costs range from $1.4 million to $2.4 million with some estimates as high as $3.5 million.

For Context

The average cost to raise a neurotypical child from birth to 18 is about $272,000 total. That makes disability parenting almost four times as expensive.

Even with insurance, many families spend $17,000 to $21,000 a year out of pocket on co-pays, deductibles, out-of-network specialists, nutritional supplements, adaptive equipment, and home modifications. These costs add up fast. Depending on how many hours a child needs, Applied Behavior Analysis (ABA) therapy alone can cost $62,000 to $250,000 a year without insurance coverage.

The Myth

“Just Get a Job With Good Benefits”

There’s an assumption that stable employment and decent medical insurance will be sufficient. However, for many families it’s not. PBS SoCal reported on exactly this in 2021: millions of parents work stable middle-class lives, hold full time jobs with benefits, and still face unanticipated gaps in medical coverage. Self-funded employer plans, which cover roughly two-thirds of workers with employer-sponsored insurance, aren’t required to follow state autism mandates. In some cases, your “good health insurance” might not cover ABA at all.

Fortunately, federal mental health parity law does apply to these plans, and recent rule changes strengthen autism protections. If your plan covers autism treatment at all, it has to cover it on par with medical benefits.

The Waitlist Tax

For many families the waitlists for psychological assessments are 12 to 24 months long. And while private evaluations may have a shorter wait time (sometimes 3-6 months), they also generally cost anywhere from $2,000 to $5,000 out of pocket.

The Middle

The Gap Nobody Talks About

In states without Katie Beckett protections only the lowest income families can access Medicaid services for their disabled children. This often covers therapies, evaluations, and home or community based services. To say the social safety net in America is imperfect would be an understatement. In many underfunded states, waitlists for Medicaid waivers stretch for decades. And qualifying for Medicaid or SSI often means keeping your countable assets under $2,000. That’s not a typo. Two thousand dollars in savings, total. For a family raising a child who may need lifetime support, the expectation that you stay functionally broke to receive help is not a safety net. It’s a trap.

On the other side of the tracks, many super wealthy families can afford to pay out of pocket. They can hire the specialists, enroll in the best special education schools, hire well paid caregivers, and manage to absorb the costs.

Working and middle-income families often fall between the cracks. They earn too much for Medicaid but too little to cover at least $60,000 a year in care costs on top of a mortgage, groceries, and everything else needed to stay afloat. The National Council on Disability calls this the “benefits cliff.” You earn too much over the limit and fall off the edge.

The Katie Beckett waiver helps some families by allowing Medicaid to cover children with significant disabilities regardless of parent income. 44 states offer some version of Katie Beckett. Most importantly, coverage varies wildly and not every child qualifies. Some states still have long waitlists, nonetheless.

The Reality

This Is Everyone’s Problem

The cost of disability is not a poverty issue. Besides the ultra wealthy, the exorbitant costs of medical care impact most members of society. Raising a child with physical or developmental disabilities is expensive at every income level. And for many families, the cost isn’t just financial. Nearly half of parents caring for children with behavioral and developmental needs have quit a job because of caregiving demands. Others cut hours, turn down promotions, or cobble together flexible work arrangements just to keep showing up. Lost wages from caregiving cost families and employers billions every year. For single-parent households, losing income and paying for care at the same time is a math problem that doesn’t solve.

The single mom making $39,000 a year and the dual-income family pulling in $130,000 are both doing math in their heads over therapy and medical care costs. Though the numbers are different, the stress is the same.

We need insurance mandates that actually cover the needs of all disabled children. We need loan forgiveness programs, training pipelines, and real funding incentives to increase the number of developmental behavioral pediatricians and child psychologists. Children shouldn’t practically age out of early intervention services by the time they’re evaluated. We need Medicaid and social security insurance (SSI) thresholds that reflect the real cost of disability, not an arbitrary line where a family earning $55,000 is fine no matter the location or circumstances.

If you’re struggling to afford the care your child needs, please know this doesn’t mean you’re bad with money or a bad parent. In reality, most of us are just parenting inside a system that was never built for the load we carry. It’s okay to say that out loud. Talking about it is the only way to advocate for change.

Helpful Resources

Resources Worth Bookmarking

1

Kids’ Waivers

Compare Medicaid waiver programs, Katie Beckett options, and TEFRA programs by state. A solid starting point for figuring out what your family qualifies for. Visit kidswaivers.org

2

Medicaid Waivers for Children with Disabilities

Our breakdown of Medicaid waiver programs, Katie Beckett eligibility, and how to figure out what your state actually offers. Read on Mom & Medicine

3

KFF State Health Facts

Compare Medicaid eligibility requirements across all 50 states. Useful if you’re weighing a move or trying to understand your state’s coverage. Explore the data

4

ABLE Accounts

Tax-advantaged savings accounts for disability-related expenses that don’t count against Medicaid eligibility. We cover what to look for and how to choose one. Read our ABLE Account guide

5

NCD Progress Report on Economic Security

The data behind the “benefits cliff.” How income and asset limits impact families with disabilities at the federal level. Read the full report

More From This Series

This post is part of our Big Decisions for Caregiving Families series, where we break down the financial realities, policy gaps, and challgenging decisions that come with raising a child with disabilities.

Explore More Big Decisions

Purchase The Complex Care Starter Bundle

Somewhere between your son’s last hospital admission and today, something happened that mattered. You know it happened. But you cannot remember enough details to tell his pulmonologist what happened and when, or which provider you saw.

Paperwork stacks up quickly when your child has complex medical or educational needs. Storing everything in one place helps you stay calm and ready for anything. While a medical binder cannot fix the fragmented nature of pediatric healthcare, it does put the information directly in your hands when you need it most.

When you’re sitting across from a provider who’s never met your child, a medical binder can save time at appointments, help you answer questions quickly, and give you peace of mind that the details are accurate.

Let’s talk about what to put inside a medical binder so you always have what you need. We’ll cover the most important things to include, plus a few extras that can make life easier.

Need the TLDR? Check out our YouTube video ‘What’s in my Medical Binder?‘

Start Here

What Every Medical Binder Needs

Three-ring binder, zippered pouch, or accordion folder: pick whatever you’ll actually keep up with. Some prefer electronic documentation for it’s portability and ease of access.

Your first section should always include emergency information with your child’s name, date of birth, address, insurance cards, primary diagnoses, preferred hospital, emergency contacts, and a recent photo. If your child uses a communication device, sign language, or has sensory needs that affect emergency response, include this information as well. Laminate copies for your child’s bookbag and school, and your vehicle so first responders can act quickly.

Your medication and allergy list is what many providers ask for before anything else. Be sure to include supplements, vitamins, and herbal remedies, since some interact with prescriptions and laboratory testing.

Your next section should include your child’s full medical history, including medical diagnoses, subspecialists’ contact information, a summary of surgeries and hospitalizations, and current medications and allergies with reaction type and emergency protocol. Providers who are unfamiliar with your child should be able to understand your child’s medical background within minutes. Set aside genetic and confirmatory testing results, too, because insurance companies and specialists sometimes ask for them years later.

THE QUIET LABOR OF MEDICAL PARENTING

Studies on care coordination in pediatric complex care have shown that families, not health care providers, are the primary holders of their child’s longitudinal medical history. The burden on medical parents is real. While a medical binder does not completely eliminate this burden, at least you don’t have to reconstruct an entire medical timeline from memory at every intake appointment.

The Supporting Sections

Other Documents You May Need Handy

These sections do not come up at every appointment, but when are useful to have accessible the occasional times when you need them.

01

Evaluations and IEP/504 Plans

Include the most recent neuropsychological, educational, and therapy-based evaluations. Add your child’s current individualized education plan (IEP) or 504 plan with meeting notes and progress reports.

02

Labs, Imaging, and Action Plans

Depending on your child’s medical diagnoses, you may find it helpful to save significant lab and imaging reports. Don’t forget to include emergency action plans for critical medical conditions like seizures, asthma, anaphylaxis, or any condition needing a fast response.

03

Communication Logs

Document critical communications with insurance companies, physicians, and educators. Print important email threads and keep copies of letters from insurance, schools, and specialists.

04

Legal, Guardianship, and School Info

Custody paperwork, guardianship letters, and power of attorney forms. Some offices will not share records without proof of authorization, especially for non-biological caregivers or shared custody arrangements. A copy of your child’s weekly schedule with therapy times and transportation details can be helpful to emergency caregivers unfamiliar with your child’s daily routines.

Keeping It Current

Set a quarterly reminder to update your child’s medical binder. Some choose to update their documentation in real time. Save additional copies of your documentation or back it up on a storage drive so you can easily share access with a trusted caregiver. For travel, compile a ‘just the basics’ version with the highest-priority documents.

Don’t Reinvent the Wheel

Even though you probably didn’t choose this journey, staying organized is how you stop small mistakes from turning into big ones.

The Medical Binder Starter Kit is a 15-page guide from a physician raising a medically complex child. The full 9-tab binder outline, a crash course on reading labs and imaging, an acronym decoder, and preparing for medical appointments.

Purchase Here

More From This Series

This post is part of our After a New Diagnosis series, where we share everything you need to hit the ground running while caring for your child with chronic medical conditions.

Browse the Series

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NOTE: Some links in this post may be affiliate links. We may earn a small commission at no additional cost to you.

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