[music playing]
These scans, like, I feel like it's a coin flip of like, well,
she's going to need another surgery again and, like
it's frickin' stressful, man.
Today is Penelope's CT scan.
This CT scan determines if Penelope
is going to have another surgery or if she's not.
If there is fluid building up around her brain,
then she would potentially need another surgery today.
Today honestly scares me because I feel like we've
had so many setbacks that, like, the last thing I want to do
is have another one.
One of the kids that I met at the hydrocephalus
walk, he was three years old, and he has already had
13 surgeries due to his shunt.
And the parents said that they've
spent more time at the hospital than they have at home.
I felt like we were like that for a while.
Just seeing the tubing coming out of her head
and draining spinal fluid was so crazy.
It's just, like, it's not, like, fair.
Yes, we both have disabilities and we
had a child with a disability, and people may judge me
for having a little person, but I'm grateful for my daughter,
and I would not change a thing about her because I--
like, she is perfect.
Because of how stressed out we've been,
I feel like our marriage has been going through it.
Yeah, you take it home with you.
It makes everyday living stressful.
And I think that that's probably
why we do butt heads is because I
feel like your way of handling stress
tends to be on the funny side.
Like, you try and make jokes and--
If you can't make a joke about some of this stuff,
then I feel like--
OK.
--it might just-- it might overwhelm you, you know?
But this year has been the hardest
year to be married to you.
If Penny needs another surgery, it scares me to death what it's
going to do to our marriage.
You honestly, like, don't know anything about the person
you married until you go through something
that can possibly be a life-or-death situation
with your children.
There were times where I thought, like, Joe hated me,
and I didn't even--
I didn't care at the time because I just--
I just wanted Penny to be healthy.
I was trying to be strong because I've never
seen Joe break down as much as I saw him break down with Penny.
The last revision really set her back.
We were on the road to recovery, and then the revision happened,
and, like, everything changed.
She doesn't even want to attempt walking now.
Any time she'll need a surgery,
it's going to be a setback.
That's the bitch about it.
So if we end up having to have another surgery,
is it going to be an even bigger setback?
That's what I'm worried about.
If he says she needs a surgery, boom,
we have to, like, kick into, like, strength mode
because I don't know if I could take any more.
The shunt is like the scariest thing
that's ever been in my life.
It scares me so much to my core because I'm
always scared about her.
I just want her to be her.
I just want Penelope to be Penny.
I just want her to act normal like she used to.
So far I haven't really seen, like, the old Penny.
She used to call me momma, and since her last surgery,
I still haven't heard momma unless I, like, prompt her,
and I don't want to have to prompt her to call me momma.
But I don't know if things will ever go back to normal,
and that scares the [bleep] out of me.