Understanding Her Doesn’t Mean It Never Hurts
Happy Sunday! 🏈🤎
I hope you’re enjoying your Sunday football, spending time with family, or doing absolutely nothing. No judgement here. 😂
Now, depending on what time you’re reading this, I’m either celebrating a Chicago Bears victory like my entire week has been made, or I’m somewhere questioning my life choices because the Green Bay Packers beat us.
Either way, please understand that my response time to messages and comments may be delayed while I either celebrate excessively or recover emotionally from whatever the hell just happened on that field. 😂🐻⬇️
And to any Packers fans reading this…
I don’t give a damn if you win or lose today.
GREEN BAY STILL SUCKS! 🐻⬇️😂
Anyway, not that we’ve gotten that important public service announcement out of the way…
Before we get into today’s post, I hope you’re somewhere you can get comfortable, take a breath, and stay a while.
Because today, I’m opening up about a part of my life I’ve kept pretty private.
This one is personal. It’s emotional. And honestly, knowing people are about to read it might make me nervous and cry all over again.
All I ask is that you read it with an open heart.
Not with pity. Not with judgement.
Just an open heart and a little understanding.
Because behind every family you think you know, there’s usually a whole lot of shit you don’t see.
Okay…..
This is probably going to be a long one.
So grab your coffee. Tequila. Water. Wine. Whatever.
And maybe some tissues.
Because I’m about to be very, very vulnerable.
And honestly?
That terrifies me a little.
For years, many, many years, I have always been the strong one.
The one people called when they needed advice.
The one people leaned on.
The one who always seemed to have it together.
The one who could somehow help solve everybody else’s problems while quietly carrying her own.
Being that person became part of who I was.
Then life changed.
And when it did, I slowly disappeared.
Not physically.
Emotionally.
I stopped answering calls as much.
I stopped checking in on people the way I used to.
I stopped showing up in some of the ways people had gotten used to me showing up.
Not because I stopped caring.
Because I couldn’t.
I didn’t have anything left.
My energy had to go somewhere else.
It went to my husband.
It went to my children.
It went to Mia.
It went to appointments, medications, specialists, hospitals, school meetings, research, lots of research, worry, sadness, crying, and simply making sure everybody survived another day.
And somewhere in all of that…
I disappeared a little.
The funny thing bout being the person everybody leans on is that when you stop having the capacity to be that person, things can get very quiet.
And very lonely.
There were days when it felt like the entire world kept moving while ours had completely stopped.
I still went to work.
I still smiled.
I still showed up to games, practices, competitions, birthdays, holidays, school events, and everything else life continued to demand from us.
From the outside, we probably looked pretty normal.
Behind closed doors?
Nothing felt normal anymore.
When One Child Needs More
One thing people don’t talk about enough is what happens to an entire family when one child has complex medical needs.
Everybody sacrifices something.
Parents sacrifice sleep.
Marriages sacrifice time.
Siblings sacrifice attention.
And the child in the middle of all of it sacrifices pieces of a childhood they never should have had to think about.
There is no manual for any of this.
Nobody teaches you how to divide yourself between your children when one of them suddenly needs more.
Not because you love them more.
Not because you chose them.
Because they need you in ways nobody planned for.
Nobody teaches you how to balance being a wife when your brain is constantly calculating medications, appointments, symptoms, school concerns, and what could go wrong next.
And nobody really teaches you how to still be you in the middle of it.
The truth?
Sometimes you don’t know how.
Sometimes someone gets less of you.
And more often than not…
That someone is yourself.
The Part I kept Quiet
Even now, there are people in my own family who don’t know the full extent of what we’ve been through.
And people who know parts of Mia’s story still don’t know all of it.
For a long time, I thought keeping it quiet was safer.
Because I was scared.
Scared people would look at her differently.
Scared they would hear diagnoses before they saw Mia.
Scared they would pity her.
Judge her.
Underestimate her.
Treat her like she was fragile.
Or worse…
Treat her like she was less.
So I protected her story.
And, if I’m being honest, maybe I protected myself too.
Because saying some of this shit out loud makes it real in a different way.
But it has been some time since her diagnoses, testing, specialists, more testing, and medical language became part of our everyday vocabulary.
And I think I’m finally ready to talk about some of it.
Not because everything is okay now.
Not because I’m suddenly fearless.
And definitely not because I have some beautiful lesson tied up in a bow.
I don’t.
I’m talking about it because maybe there is another mom sitting in a hospital room, a parking lot, her bedroom, or her car wondering how the hell she is supposed to process what just happened to her life.
Maybe she feels terrified.
Angry.
Guilty.
Hopeful.
Heartbroken.
Grateful.
Exhausted.
All at the same damn time.
I know that feeling.
This Is Mia
For those of you who don’t know me personally, or maybe you know me but don’t know much about my children, let me introduce you to Mia.
Mia is my youngest. My baby. The last of my four children.
She’s seven years old, full of personality, and has absolutely no problem reminding everyone in this house that she may be the youngest, but that doesn’t mean she isn’t going to have an opinion. 😂
She’s funny, stubborn, dramatic, incredibly independent, and probably one of the most determined little girls you’ll ever meet.
She loves tumbling, basketball, dancing, playing video games, sorting, playing the piano, and doing things that occasionally make me question whether my heart can handle another one of her adventures.
She’s also incredibly smart, sensitive, loving, and selective about who gets to see the full Mia experience.
If she lets you into her little world, consider yourself special.
Because behind the quiet little girl some people see is a whole lot of personality.
And before I tell you about everything she’s been through, I need you to understand something.
Mia is so much more than what you’ll read on a medical chart.
Now with that being said…
Here’s the part of her story I’ve kept private.
Mia has epilepsy.
She has autism.
She has brain scarring from seizures.
She has social anxiety.
She has selective mutism.
She also has a heart syndrome that has added another layer to an already complicated medical picture.
Those things are part of her life.
But they are not her.
And I need people to understand the difference.
Because when you list diagnoses on paper, they sound so clinical.
Epilepsy.
Autism.
Brain scarring.
Social anxiety.
Selective mutism.
Heart syndrome.
Words.
But living them?
That is completely different.
I have watched my daughter stop breathing.
I have watched machines breathe for her.
I have waited for her to wake up.
I have prayed for her to please wake up.
I have sat in hospital rooms wondering whether our lives would ever feel normal again.
I have watched seizures take over her body and stood there completely helpless while other people worked to save her.
Those moments don’t just disappear when you leave the hospital.
They follow you home.
They sit beside you while she sleeps.
They don’t let you sleep.
They make you stay up watching over your child out of fear of them not waking up again, not breathing again.
They wake you up if you happen to finally fall asleep and you hear a strange sound in the middle of the night.
They change the way you look at ordinary moments because you suddenly understand how quickly ordinary can disappear.
Mia spent far too long in status epilepticus, and because of that she has scarring on her brain.
That became one more piece of the puzzle we were trying to understand.
Why does she process something this way?
Why is this harder?
Why did something work yesterday and suddenly not work today?
Why does she understand something perfectly one moment and struggle with it another?
There have been so many moments where we felt frustrated.
Where I wondered if we were failing her.
And eventually I started realizing something:
Maybe she wasn’t failing at the way we were teaching her.
Maybe we were failing to understand the way she learns.
That realization changed a lot for me.
Because once I stopped expecting her brain to do everything the way everybody else’s does…
We started seeing more of what she could actually do.
And holy shit, has she surprised us.
She Keeps Proving Me Wrong
Mia is one of the most independent little girls I know.
She is incredibly intelligent.
She is talented.
She is determined.
She is a perfectionist.
And she has proven me wrong more times than I can count.
Every time fear whispers, Maybe she won’t be able to…
Mia has a habit of saying, in her own way,
Watch me.
Sometimes she does things differently.
Sometimes it takes longer.
Sometimes she needs more repetition.
Sometimes she needs us to completely change how we explain something.
And sometimes she does exactly what every other child her age is doing.
Sometimes she blows right past whatever expectation I had.
She has taught me that intelligence doesn’t always look the way people expect it to.
Neither does communication.
Neither does affection.
Neither does connection.
Neither does success.
And my job is not to let my fear make her world smaller.
So I advocate.
I research.
I ask questions.
I probably annoy doctors and teachers sometimes.
Actually…
I know I do.
I learn.
I adapt.
I have learned to advocate for her like it’s no one’s business.
I push when I know she can do more.
I back off when I realize she needs something different.
And I try every damn day to give her the same opportunities, experiences, and childhood I have always wanted for all of my children.
Because different doesn’t mean incapable.
But Understanding It Doesn’t Mean It Never Hurts
This may be the hardest part for me to admit.
I understand Mia much better today than I did a year ago.
I understand that she processes the world differently.
I understand that social interaction can take a lot out of her.
I understand that sometimes her brain is doing a hundred things at once while everyone around her assumes she is simply being quiet.
I understand why she may freeze.
Why she may shut down.
Why she may need more time.
I know all of that.
And sometimes…
It still fucking hurts.
I found that out a few days ago sitting in my car.
Crying.
Over something that sounds so small when I say it out loud.
Mia doesn’t always say hello to me when I come home.
And apparently I hadn’t accepted that quite as much as I thought I had.
I got home that day, maybe around 4pm, and she refused to speak to me.
I then had to leave around 5:45pm to pick up Sebastian from football practice.
I cried on my way to pick him up.
I parked the car to wait on him.
And recorded myself going through these emotions.
I’ve always wanted to share these moments because I think people need to see that vulnerability is something we all experience. Behind the smiles, the pictures, the everyday routines, and the people who seem to have their shit together, there’s a whole lot of life happening that nobody sees.
But here’s the thing…
I’ve never actually had the courage to post anything like this.
Because as much as I preach about being real, letting people see me completely fall apart?
That’s fucking terrifying.
I don’t like people seeing me cry.
I don’t like people seeing me vulnerable.
And I specially don’t like people seeing the version of me who doesn’t have the answers, doesn’t know what to do next, and can’t seem to get her shit together.
But that’s exactly why I started Life, Unfiltered.
Not to show you another perfectly curated version of my life.
But to show you the parts I’ve spent years keeping to myself.And if I’m going to encourage people to be honest about the shit they’re going through, I guess I have to be willing to do the same.
And before I share the video let me address something real quick.
I already know there will probably be people who watch this and think…
“She’s being dramatic.”
“Why would she record herself crying?”
“This is staged.”
“She’s doing too much.”
And to that, I say…
Quite frankly, I don’t give a fuck.
You don’t have to understand why I record these moments.
You don’t have to agree with me sharing them.
And you certainly don’t have to believe every emotion you see.
But here’s what we’re not going to do.
We’re not going to pretend that just because somebody chooses to document their pain, that pain somehow becomes less real.
The camera didn’t create the tears. It just happened to capture them.
I’ve spent enough years worrying about how people might perceive me. I’m not about to let somebody else’s opinion dictate which parts of my own life I’m allowed to talk about.
If you think I’m dong too much, that’s okay.
You’re more than welcome to close the tab.
But for the person who has cried in their car, wiped their face, and walked back into their responsibilities like nothing happened…
This one’s for you.
I cried while I drove to pick up Sebastian from football practice.
Cried in the parking lot.
I then realized I had to pull myself back together.
Because in a few minutes, Sebastian was going to get in the car.
And he didn’t need to climb into the passenger seat and immediately start worrying about why his Mom had been crying.
I wiped my tears.
Checked my eyes in the mirror.
Took a breath.
And then I caught myself doing something that was almost funny.
You see, whenever my kids cry, I’m always telling them the same thing.
“Fix your face.”
Well, apparently it was my turn.
So I fixed my face.
And when Sebastian got in the car, I went right back to being Mom.
That’s the part people don’t always see.
You can be falling apart over one child and still have to show up for another five minutes later.
There isn’t always a time to process it.
Sometimes you just keep driving.
And that moment in the car?
That was about something I’ve been trying to understand and accept for a while now.
There are days when I walk through the door wanting something I think most moms picture without even realizing it.
My little girl running to me.
A “Mom!”
A hug.
A hundred stories about her day.
Who she sat with.
What made her laugh.
What bothered her.
What happened at school.
Instead, sometimes I walk through the door and Mia doesn’t talk to me.
Thirty minutes.
An hour.
Sometimes longer.
And I know why.
She has spent an entire school day processing noise, people, directions, transitions, expectations, conversations, and everything else the world asked from her.
By the time she comes home, she may simply be done.
Home is where she can finally decompress.
Sometimes that means she doesn’t have to talk.
She doesn’t have to immediately give somebody else another piece of herself.
I understand that.
I understand all of it.
And sometimes I still wish she would run to me.
Sometimes I still want the hug.
Sometimes I desperately wish she would tell me everything about her day because the truth is, she often doesn’t.
And that’s hard too.
Because how do you help your child with something you don’t know happened?
How do you know what hurt her feelings?
What confused her?
What she struggled with?
What made her anxious?
What happened at school?
Sometimes I simply don’t know.
And I hate that.
Not because she owes me a play by play of her life.
But because I’m her mom.
And when something hurts her, I want to know.
I want to fix it.
I want to understand it.
I want to make it better.
And sometimes I can’t.
Sometimes I have to wait until she is ready.
Sometimes I never get the whole story.
That is hard for me.
I’m still learning how to sit with that.
Because understanding why something happens does not magically remove the feelings attached to it.
I can respect what she needs and still admit that sometimes I wish it looked different.
I can understand why she doesn’t run to me every afternoon and still feel a little ache when she doesn’t.
I can celebrate the ways she communicates and still sometimes wish communication were easier for her.
Both things can be true.
And If She Doesn’t Say Hello…
This is probably something I want people around Mia to understand more than almost anything.
If you say hello to her and she doesn’t respond…
Please don’t take it personally.
Please don’t immediately assume she is being rude.
Please don’t label her disrespectful.
And please don’t force her to perform politeness when she may not be ready to respond.
Sometimes she freezes.
Sometimes she shuts down.
Sometimes she hears you perfectly and still cannot make the words come out.
Sometimes she simply needs more time.
That doesn’t mean she didn’t notice you.
It doesn’t mean she doesn’t like you.
It doesn’t mean she doesn’t care.
And it definitely doesn’t mean she doesn’t want connection.
Because if you are one of the people she has let into her little circle…
You know.
You know the funny little girl behind the quiet moments.
You know how goofy she is.
How imaginative she is.
How smart she is.
How independent she is.
How determined she is.
How deeply she loves.
And let me be very clear:
She is also still every bit of a seven year old.
She is stubborn.
She is dramatic.
She argues with her siblings.
She laughs until her belly hurts.
She gets excited over the smallest things.
She somehow manages to yell “Mom!” approximately 847 times a day when she wants something.
And she absolutely gets on my damn nerves sometimes.
Because disability does not turn motherhood into some beautiful inspirational movie.
Sometimes your kid is still just your kid.
And sometimes your kid is annoying.
That is real too.
I Don’t Grieve Her
I want to make something very clear because this is where conversations like this can get uncomfortable.
I have grieved.
I still grieve sometimes.
But I do not grieve Mia.
I grieve things I imagined before I knew what our life would look like.
I grieve challenges she never deserved.
I grieve the pain her little body has endured.
I grieve experiences that may always be harder for her.
I grieve the uncertainty.
I grieve knowing there are things she may have to work twice as hard to accomplish simply because the world isn’t always designed for the way she experiences it.
But I do not look at my daughter and wish she was someone else.
That distinction matters.
Because she has taught me more about resilience than almost anyone I know.
She has taught me that success can look different.
Communication can look different.
Connection can look different.
A childhood can look different.
A life can look different.
And different is not automatically bad.
The Guilt Nobody Prepared Me For
And while we’re talking about the things nobody prepares you for…
Let’s talk about the guilt.
Because holy shit, the guilt.
One of the hardest parts of this entire journey hasn’t been worrying about Mia.
It’s been worrying about the three other children who still needed their mom while I was trying to keep their little sister safe.
Because here’s the thing.
I have four children.
Not one.
Four.
And every single one of them deserves a mother who is present.
A mother who listens.
A mother who shows up.
A mother who notices when something is wrong.
But how do the hell do you divide yourself equally when one child needs more of you just to get through the day?
More appointments.
More hospital visits.
More emergency room visits.
More medications.
More therapies.
More school meetings.
More advocacy.
More research.
More sleepless nights.
More of everything.
And none of it was because I loved her more.
It was because she needed me differently.
But knowing that doesn’t make the guilt disappear.
There have been nights when I’ve lain in bed wondering…
Did Sebastian need me today, and I was too distracted to notice?
Did Kayla have something going on that I should have paid more attention to?
Did Alexia need her mom while I was too busy trying to figure out everything happening with Mia?
Did I miss something important?
Did they feel forgotten?
Did they ever feel like they were coming second?
And the worst part?
I don’t always know the answers.
That’s what keeps me up sometimes.
Because while I was trying to make sure Mia didn’t miss out on life, I was terrified that my other children might be missing out on pieces of me.
And that fucking hurts.
I’ve missed moments.
I’ve canceled plans.
I’ve said, “Not right now.”
I’ve been distracted.
I’ve been exhausted.
I’ve been in hospital stays.
I’ve been physically present but mentally somewhere completely different.
And I hate admitting that.
Because my children didn’t ask for any of this either.
They didn’t ask for their lives to change.
They didn’t ask to have a mom whose attention was constantly being pulled in a hundred directions.
And they certainly didn’t ask to have to understand things that even I was struggling to understand.
But life didn’t exactly give any of us a choice.
And somehow, in the middle of trying to keep everyone okay, I was also trying to convince myself that I was doing enough.
Enough for Mia.
Enough for Sebastian.
Enough for Kayla.
Enough for Alexia.
And sometimes?
I don’t think I was.
That’s a hard thing to admit publicly.
Especially when you’ve spent most of your life being the person who supposedly has everything under control.
But this is Life, Unfiltered.
And I’m not going to sit here pretending I handled every part of this beautifully.
I didn’t.
I was scared.
I was overwhelmed.
I was exhausted.
And sometimes I was so busy trying to survive that I didn’t realize how much of myself I had stopped giving to everyone else.
Including my other children.
And if Sebastian, Kayla or Alexia ever read this, there’s something I need them to know.
I have never loved one of you more than the other.
Not for one single second.
If it ever felt like Mia got more of me, it wasn’t because she had more of my heart.
It’s because she needed more of my hands.
More of my time.
More of my attention.
More of my advocacy.
More of my protection.
But my heart?
That has always belonged to all four of you.
Equally.
Completely.
Unconditionally.
And I know love alone doesn’t erase the moments I missed.
I know saying I was doing my best doesn’t automatically make everything okay.
If there were times you felt overlooked, I want to hear that too.
Because your feelings matter just as much.
I can’t go back and change every moment.
But I can keep showing up.
I can keep listening.
I can keep learning how to be the mom each of you needs, even as those needs change.
And maybe that’s another uncomfortable truth about motherhood.
You can give everything you have and still wonder if somebody got less than they deserved.
I don’t have some beautiful lesson to wrap around that.
I’m still working through it.
And honestly?
I probably will be for a long time.
She’s Still Mia
Mia isn’t defined by epilepsy.
She isn’t defined by autism.
She isn’t defined by her heart syndrome.
She isn’t defined by her social anxiety.
She isn’t defined by her selective mutism.
And she isn’t defined by the scarring on her brain.
Those things are part of her story.
They are not her.
She is Mia.
Funny.
Dramatic.
Stubborn as hell. (She got it from my husband.)
Independent.
Smart.
Talented.
Sensitive.
Determined.
Loving.
Complicated.
Seven.
And still becoming the person she is going to be.
I don’t know exactly what her future looks like.
That used to scare the absolute hell out of me.
Sometimes it still does.
But I’m trying to stop writing her future based on my fears.
Because every time I decide there might be something she can’t do, she finds some way to remind me that her story isn’t mine to limit.
My job isn’t to predict every chapter.
My job is to make sure fear doesn’t stop her from getting the chance to write them.
And I’ll be right beside her.
Learning.
Advocating.
Cheering.
Questioning.
Probably overthinking.
Definitely worrying.
And believing in her, even on the days she is still learning how to believe in herself.
And through all of this, I still believe god chose me to be her mom for a reason.
Not because I was somehow specially equipped for this.
Trust me.
There have been plenty of days where I have looked toward the ceiling like,
“You sure about this one?”
But maybe being her mom was never supposed to mean I already knew what I was doing.
Maybe I’m supposed to learn alongside her.
Maybe we’re both figuring this shit out as we go.
There Isn’t A Pretty Ending
I don’t have some perfectly inspirational ending for this.
That wouldn’t be very Unfiltered anyway.
I still worry.
I still get scared.
I still grieve things I thought motherhood would look like.
I still cry over things I thought I had already accepted.
I still wonder if I’m doing enough for each of my children.
Sometimes I understand exactly why something happens and still wish with everything in me that it didn’t have to be so hard.
And tomorrow?
Mia will probably do something completely ordinary that irritates the hell out of me.
I’ll probably tell her to pick something up for the fifth time.
She’ll probably yell at me”Mom!” from another room rather than walking ten feet to find me.
Sebastian will probably need reminding about cleaning his room, for the third time.
I’ll probably check in on Kayla and Alexia to make sure they’re doing okay, or to yell at them about something they already did.
And somewhere in the middle of all of that, I’ll probably wonder why I ever wrote an entire emotional blog post and video about wishing Mia would talk to me more. 😂
Because that’s motherhood too.
It isn’t one feeling.
It isn’t one child.
It isn’t one perfectly balanced, beautifully organized life.
It’s loving four very different people with everything you have, sometimes wondering whether everything you have is enough.
I don’t want my fear to make Mia’s world smaller.
And I don’t want my expectations of who I thought she would be to keep me from seeing exactly who she is.
I also don’t want the sacrifices this journey has required to make my other children feel like their stories matter any less.
All four of them matter.
And somewhere in the middle of trying to be everything they need…
I’m still learning how to be Maria too.
Different doesn’t mean less.
Not for Mia.
Not for any of my children.
And not for this version of motherhood I never saw coming.
I don’t have it all figured out…
Apparently…
I’m still learning too.
Until next time,
Keep your shit together. Or don’t. 🤎
-Maria
P.S. And because I can’t possibly end this emotional roller coaster without a little humor…
Meet Mia. My baby. My whole heart. In true Chicago Bears fashion.
She’s seven, she’s got more personality than she knows what to do with it, and she’s already learning one of life’s most important lessons…
No matter what life throws at you, you keep going. And no matter what the scoreboard says, GREEN BAY STILL SUCKS! 😂🐻⬇️
Sorry, Packers fans. You really thought you were getting through an entire blog without me talking shit?
