CP Won't Define Me: Maria's Story

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Maria's first breath came 15 minutes after she was born. In those critical moments, as a midwife performed mouth-to-mouth resuscitation in rural Missouri, the trajectory of her life was forever altered. What followed was an emergency helicopter evacuation to a distant hospital, while her parents were left wondering if they'd ever see their newborn daughter alive again.

This remarkable story kicks off our conversation with Maria, who shares her journey living with cerebral palsy from those dramatic first moments through childhood developmental challenges and beyond. With extraordinary candor and unexpected humor, she recounts the medical interventions that saved her life—including a desperate decision to administer an adult dose of Valium that could have either killed her or stopped her continuous seizures—and the years of intensive therapy that followed

Growing up in "the boondocks" of Missouri in the 1980s and 90s meant limited access to specialized services, requiring Maria's mother to drive 40 minutes each way, five days a week for years, to ensure her daughter received needed therapies. Through these efforts, Maria eventually reached major milestones on her own timeline: rolling over at eight months, walking at five years, and teaching herself to run at nine because she was determined that "come hell or high water," she would run.<br><br>What makes this episode particularly powerful is Maria's refreshing perspective on disability. When asked if she would remove her CP if given the chance, her answer is a resolute "no." Rather than seeing her condition as something to overcome, she views it as an integral part of her identity that has given her unique perspective and shaped her into a person she loves being. Her story challenges listeners to reconsider how we view limitations in our own lives and demonstrates how adversity can forge remarkable character and resilience.

Subscribe to our podcast for more enlightening conversations about disability experiences, and join us next time to hear the continuation of Maria's journey through college and beyond!

You May have noticed I added a transcript.  This is produced by AI and sometimes it gets words wrong if you have speech problems.  In this episode, we threw 2 people with abnormal speech at it with pretty good results.  It did not get a few words Maria used so I put the corrected word next to it, in parenthesis.

Later this week, I will also correct the other season 3 episode. And hopefully each episode from now on will also be publishable.

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Episode Transcript

Kevin (00:08):
Welcome to our podcast.
When Life Gives you Limits, I'mKevin.

Palmi (00:15):
.
We consider ourselvesdisability advocates and intend
to spotlight some disabilityissues and things we find
interesting that we frequentlyencounter when we're out and
about.
Also some history on disabilitythat we find interesting.

Kevin (00:32):
On this episode we're detailing the story of Maria,
who has cerebral palsy.
Palmi is going to ask her a fewquestions and she's going to
tell basically her story.

Palmi (00:57):
Right, Maria, is that about right Three years?

Maria (01:00):
Three, four.

Palmi (01:01):
Yeah, yeah, we only party together.
We don't see each other otherthan about once a year.
We go to a party together atChristmas.

Maria (01:11):
Well you, know we have been that year recovering,
that's right.

Palmi (01:20):
You're right, it takes a year to recover.
You're right, it takes a yearto recover.
You're so funny.
And Maria, you were born withCP, is that correct?
Yeah, can you give us a littlebit of your background, about
your family and CP and yourlittle history there?

(01:41):
Yeah, and your little historythere.

Maria (01:44):
Yeah, so I was born in 1989.
So back in the boondocks ofPatton, missouri, pat and Smith,

(02:05):
I was actually born at a.
So my mother worked as a nurseback before you had to have

(02:26):
letters behind your name, and soshe worked at a midwife house
in Perryville, missouri.
And so I was born at themidwife house and I was a breech

(03:03):
birth.
They literally had to my mothersays rip her apart to get me
out and so I came out notbreathing.

(03:24):
The midwife Came out notbreathing.
The midwife done mouth-to-mouthfor 15 minutes and I took my

(03:47):
first breath at 15 minutes.
So so, um, they kind of wrappedus up and cause they knew I
would need medical attention.
Well, they call around andturns out all the EMS personnel

(04:23):
personnel is out on a I forgetnow if it was a 5 or 10 car
power out on 55.
So the nearest way to get me toCardinal Glennon or somewhere

(04:56):
else was to call a helicopterfrom Columbia to come down and
get me from the middle of highschool.
Wow, they meet the wholeculture at the school and mom

(05:36):
and dad don't know if they'reever going to see me alive.
So your mom didn't go with youthen?
No, because we're talking 35years ago.

(05:58):
So she had went down to hermother's house and that's in
Missouri to recover.
Wow, my dad worked for thecounty in Madison County, so

(06:34):
what he would do, he would driveto work from Prickertown,

(06:57):
no-transcript, to bring me mymom's milk, wow.
And so I spent the first threeweeks in Columbia.

Palmi (07:21):
That's all.
That's all you spent.
Were you full term?
Yeah, oh, you were full term.
Yeah, yeah, but you didn'tbreathe for the first 15 minutes
, right.

Maria (07:34):
And sorry for the background noise my cat has
found his ball.
Is that the monster?
Yes, four months old, until Iget two years old, but you know

(07:55):
so anyway.
So I started having seizures onthe way up to the hospital, wow

(08:17):
.
And so, at three days old, theycall mom and dad and they're,
like you know, she's seizingevery five minutes were running

(08:43):
out of options because I hadbeen matched out on a dial in
and clean and barbed wire.
Wow, and Queen and Barbara, andso the next option they had was

(09:10):
to give me a adult dose ofvolume.
That would do one of two thingsone, it would kill me.
That would do one of two thingsOne, it would kill me, or two,
it would stop the seizures.

(09:33):
So my body could rest, right,well, I slept for 36 hours and
did not have a seizure until theage of three.

(09:54):
Wow, when I was born, they alsofound out that I had no gag

(10:32):
reflex.
So they immediately took meinto surgery to have a (gastric
tube) G2.
And that was how I I had the G2, but it's like a button that
goes directly into your stomach,right, so I didn't have like

(10:59):
the nose thing or anything,right, right, so I got home, I
was on heart monitors.

Palmi (11:15):
Got home.
At what age?
What age did they discharge youfrom the hospital?

Maria (11:19):
Three weeks, wow, three weeks, wow, three weeks.
And so the first year of mylife I was strictly homebound.
Right, because I had heartmonitors.

(11:40):
I had you in a differentmedicine Since I had the
substitute, because since I didnot have any gag reflex, gag

(12:00):
reflex, I really had no way ofcoughing or, you know, not
sucking down my love.
Right yeah, so, um, right, yeah.

(12:22):
So that was the first year Ihad therapies come in the home.
I had a nurse, and so at thetime they were just starting

(13:12):
First Steps, actually the firststeps filed in Southeast
Missouri, because at that pointyou had to either go to
Sightston, to sites in St Louis,columbia or Springfield to
receive services.
Right, yeah?

Palmi (13:34):
For people that don't know.
We're kind of in the boondockshere, yeah.

Maria (13:40):
We're out in the middle of nowhere.

Palmi (13:43):
There you go, yeah.

Maria (13:47):
And you know people who may be in Cape or know of Cape
(Girardeau) Verde.
30 years ago you had the maindrag and that was it.

Palmi (14:06):
It's grown a lot since then, but it wasn't big back
then.

Maria (14:10):
Oh yeah, oh yeah, and so the first three years of life I
received in home therapy throughthe hospital which was at that

(14:35):
time Southeast Hospital, and atthree years of age I began first
steps and that's when I startedreceiving therapy at the

(15:33):
pediatric spot, which veryhand-taught so we went to
therapy, we got PT, ot andspeech therapy and that's where
I got therapy.
Until six years of age mymother would drive me to therapy

(15:59):
from Patton Missouri, me totherapy from Patton Missouri,
which is about a 40 minute driveone way, every day, monday
through Friday.
And yeah, so you know.

(16:21):
And then, of course, when I gotto school, I did therapy at
Perry County Hospital, whichback then was called Perry

(16:43):
County Memorial Hospital.

Palmi (16:48):
So you did that from the school they transferred you over
, or did you do it through theschool?

Maria (16:53):
Yeah, so they contracted with the school Um.
So you know, mom got paid forher mileage um.
And then when I got older, intomiddle school and high school,

(17:23):
they changed to the school to dotherapy.
So you know, my entire life wastherapy and you know, and you

(17:50):
know, trying to better myself,because I did not roll over
until eight months of age, Ididn't walk until about five
years of age, I didn't run untilabout nine, and that's because

(18:18):
I taught myself how, because onesummer I told mom I said I am
going to run, you know, here,high water you know Right Now, I
don't know this are you theonly child in your family or do

(18:41):
you have brothers and sisters?
So technically I have ahalf-brother.
But you know that's been aunique relationship as well,
because before he got into hispastoring job he was actually a

(19:14):
personal trainer, because he sawme go through what I did, so he
grew up with you in thehousehold then yeah, yeah, we
are very close.

(19:37):
We have never had a fight.
We have only had twodisagreements, and they weren't
really disagreements, we justhad different opinions on this

(20:01):
situation, right?
So you know that is somethingto say a person with a
disability.
It's allowed me to see life ina whole different perspective,

(20:38):
exactly.
You know, I have actually beenasked before if I could go back
and take my CP away.
Would I do it?

(21:00):
And I always say no because Iwould not be the person I am
without the secret.
That's amazing.
People look at me like what theheck is this?

Palmi (21:27):
I would not change a single thing, yeah Well, it
would be easier.
Your life would be easier, forsure.
But you're right, you may notbe the same person you are today
.

Maria (21:40):
Well, I knew I wouldn't.
Yeah, I wouldn't, and besidesthat, I wouldn't have the
stories I have, and that's thething.

Palmi (22:00):
With all that stuff.
It seems like it would make youhard or angry or stuff like
that, and it's just done theopposite.
When I've met you, um, you'rejust the opposite.
You're a ray of sunshine,you're always making whoever's
around you very happy and, um,seems like you enjoy life.
But I know that can't always bethe same.

(22:20):
Have you ever gone throughsomething where it's been very
hard on you?

Maria (22:25):
Well and honestly it's funny you bring that up because
you know my story don't end.
When I went to school Right,our school was a school of 500

(22:54):
kids, k-12.
Actually, my graduating classwas 54 people and we were the
biggest class in 10 years, wow.

(23:16):
And so I got made fun of, I gotpicked on.
But you know I helped my owntoo.
Now I had a professional thathelped me and went around with

(23:41):
me so she could kind of protectme in ways.
But you know, kids are mean,exactly, and she wasn't with me
in 24-7 either.

(24:01):
You know she had to go dothings and all that and so.
But I also was so known in myschool that, yeah, you had the

(24:23):
mean kids, but you also had kidsolder than me.
That would kind of be.
I still keep in contact withand you know, if you mess with

(24:59):
Maria, you mess with them andyou didn't want to mess with
them and you didn't want to messwith them.
That's a good one, Darta.
And now you know we get intotrouble.
Well, of course we did.

(25:20):
You know we were scared, butnothing that you see nowadays.
It was more like unhookingbattery cables and the

(25:42):
principal's car, you know,Innocent stuff, stuff like that
yeah.
And so I went to college.
Yeah, you did.

Palmi (25:58):
You have a famous story about college.
You gotta tell that story.
Oh, yeah, we talk a lot aboutthe discrimination of being

(26:20):
disabled, and so this is a primeexample of this story.
Oh yeah, medications that wouldinteract with this medication,
or any medications that she'staking.
So you have to know right offthe bat that she does not drink.
So go ahead, maria, tell thestory.

Maria (26:35):
So it was my sophomore year.

Palmi (26:41):
What did you go to school for?
I didn't ask that.

Maria (26:45):
I didn't ask that.
Well, I went to school forspecial ed because in my
18-year-old brain that wanted toconquer the world, world.
I wanted to help the kids(just) dress like I had been an

(27:17):
example for them to look up to.

Kevin (27:20):
Yeah wow, Palmi, that was great.
I enjoyed hearing Maria's story.
Join us again next time so youcan hear the rest of Maria's
story.
I apologize for the numerousaudio difficulties in there.

(27:48):
We're having a very bad stormhere and I was unable to get a
lot of it out during editing.
Until next episode, take thoselemons and make your own
lemonade.