Choosing Authenticity Over Perfection: Embracing the Beauty of Being Normal(VIDEO)

All I want is to be outgoing.

I aspire to be authentic.

Tissue Expanders

Jennifer Hiles was born with an arteriovenous malformation, or Avm, a jumbled mass of arteries and veins in her head and on her face which would hemorrhage at any moment, possibly fatally.

And now she has had tissue expanders placed under the skin of her face, just like a big balloon with saline inside, basically like breast implants just in my face.

As these are enlarged over the course of two months by adding more liquid, they will allow extra skin to grow which will be used as grafts.

When she has an Avm removed in May, they’re gonna remove all my avian and all the bad tissues, which is all the pink, and they move my nose and build my rib, and then, since all this damaged tissue will be gone, they’ll need something to replace it with.

So remove these expanders and they’ll have a whole bunch of skin to work with normal white colored face.

I don’t know if I’m gonna look like normal, like I don’t want to look perfect, I just want like normal.

I guess I can see past like her outside figure.

Cuz she’s so beautiful on the inside it doesn’t really matter about what’s on the outside.

To me it’s kind of scary to think about like what she’s gonna look like, because like- who knows like-

It’s just like a mystery.

So it’s gonna be weird to get used to, but it’s not gonna determine like the way I’ve packed or feel around her.

Blood Loss

I was gonna think she’s beautiful when Jennifer was born.

She had a birthmark which soon grew worse.

I started to bleed all the time when I was like three months old, so I would always have to get blood transfusions.

They had tried to cauterize her veins, blood vessels, to see if that would make it stop, and that would not.

That wouldn’t even work for her.

There be times where I was terrified to go to sleep at night because her nose would bleed in the middle of the night, with her not even crying or anything, and I’d wake up and there’d just be blood covered all over the sheets, got down her stomach, and that would make her really sick.

There’s a point in time where she got so sick and was so pale that she threw up a ton of blood and I had to call 911.

I almost lost my daughter.

It was a scariest day of my life.

She only had like two pints of blood in her body left.

They had to give her a blood transfusion.

Although Jennifer was officially diagnosed with Avm, age 12, and has had several surgeries, including the removal of benign tumors, she’s still at risk from blood loss.

This basically makes my nose bleed all the time, makes my gums bleed and has completely eroded the bone line in my teeth.

And if my teeth fell out then I could lead to this.

So that really impacts my life a lot.

It makes my throat bleed.

It makes me have headaches, like all the time because of all the arteries of my head.

Unwanted Attention

Just constantly pounding a condition has meant she’s faced a lifetime of unwanted attention, and this can still be a problem when she picks her children up from school.

As soon as all the first graders come out the door, one of them looked over at me and he just yelled: what’s wrong with her face?

What’s wrong with that lady’s face?

They have to say it’s gross and sick and be like his mom.

Is that last time they did that?

I waited for my daughter to come outside and I didn’t even say anything to her.

Give her a hug, like you normally do.

I just walked straight past her, like into the school, because I felt we couldn’t cry or like pass out.

Like I’m more worried about them making fun of my daughter.

They are kids.

There are days where I feel really overwhelmed and really tired of like everything I have to go through just to feel good again.

And I know that I do a really good job at like tricking everybody.

Cuz I always like try to pretend like I’m really positive, ever be really positive, and so I guess I kind of feel alone in that sense.

Like I just try to tell people that everything is doing good and be positive about stuff, but it’s really hard to do that.

Like I kind of feel like a big liar, cuz I tell everyone like everything’s going good.

She prepares for her operation.

Jennifer has explained to her children about the procedure she’s undergoing.

They’re gonna cut your losses, yeah, everywhere.

I kind of told the girls like what’s gonna happen and how it’s gonna look and how it might be kind of scary for them.

And Marlina, like instantly start crying

And she says she didn’t want to see me like that.

But then she don’t want to be without me for a long time either.

Once their operations in mayor complete.

She hopes that bleeding will stop and her appearance.

I’m praying and hoping that she can live a happier and healthier life or she can go out in public where people won’t stare at her and think you know she, where she don’t feel like she’s any different from anybody else.

If I don’t ever have curry about like bleeding or hemorrhaging, or going to the school and having kids not going, so I pick up Marlena if I want to go over lunch with her or all that.

That would be like your happiest day ever.

I don’t even know what that would feel like.

It was really awesome you.

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