LESLIE PEPIN Shiloh’s Mother

She came out and she was absolutely beautiful, and she had so many amelia.

And then they told us: well, she probably won’t survive next few days.

Okay, she’s gonna die.

So we waited for three days.

She didn’t die.

That’s me when i first opened my eyes.

Yep, when you first opened your eyes since the first time i looked into her eyes.

I told her that i’m here.

ELMER PEPIN Shiloh’s Father

I’m your dad and i’m not going anywhere, and we’re going to get through this together.

And that’s what i meant.

That’s your stoma.

That was my first first surgery.

That was your very first surgery, yep, in addition to suffering from mermaid syndrome, Shiloh was born with almost no large intestine and just a small piece of her kidney.

She has no rectum, no vagina and no bladder.

That’s you in the hospital again.

Why?

It’s a complicated medical procedure that would have been too dangerous before now, and one that would require five life-threatening operations over the course of three years.

Well, you know shy it is.

It’s one of the hardest things.

We’ve talked about that before.

After careful consideration, Shiloh made the final decision.

It’s kind of like an operation.

SHILOH PEPIN

She will have to learn how to overcome these obstacles in much the same way.

She learned how to swim late, but we’re on her way.

We’ll see you soon.

Her parents weren’t sure how she would cope in the water, but last year they had a specially designed wetsuit made and she started taking lessons.

I cannot wait to sun again.

Since then, Shiloh has been swimming twice a week with her coach jared and is now working towards swimming a lot.

You gotta get down in the pool all on a roll.

You ready to rock and roll, or what?

Yeah, All right, you know how to get in what.

Yeah, You get in the pool, Honey.

Wow, look at you, let me get in the water.

Yeah, All right, i’m trying.

Yeah, You’re doing awesome.

Wow, you’re doing this all by yourself.

Now, very nice, all right.

Yay, there we go.

Look at you.

She doesn’t need any help, she doesn’t need anybody.

She’s not disabled, she’s not handicapped, she’s free, and what could you want more for her than that?

You’re cruising, keep making the circles.

Look at that.

Sometimes it’s very frustrating, because there’s very little that we can give her.

But here you know, she’s just like any other kid, just swimming, and it makes me very happy.

Towards the end of the lesson, Shiloh attempts to swim a lap of the pool unaided for the very first time.

You can do it almost there.

Look at him.

Swim down, girl, way to go.

Jared is so impressed by Shiloh’s performance.

After the lesson, he brings up the possibility of her taking part in a swim meet.

So there’s a meet that we’re going to have here and it’s going to be in July 11th, all right.

So that’s going to be our goal: that we are ready to swim.

So you think we could work really hard and do that.

Yes, all right, well, i got some stuff for you.

Thank you, all right.

What do you say?

Participating in a swim meet would be a first for Shiloh, and socializing with other children would be a big step towards her growing need for independence.

She may attend her local elementary school, but having spent so much time in the hospital, interacting mostly with adults, she finds it difficult to relate to children her own age.

One of the things we never worried about Shiloh is that she hasn’t been that social.

She hasn’t been with a lot of kids her own age.

She hasn’t participated because she’s grown up in the hospital.

This is my classroom, this is my desk and these are my other friends desks.

One day Minnie was going to school and she was 16 years old

And she was enough and Mickey was.

When i first came here, i was a little afraid that i wouldn’t be able to have friends because i was a little shy.

And just because i’m different doesn’t mean i’m not the same.

Mrs Humphrey means to do a craft together that we make ourselves to show that we are team Humphrey.

We drew ourselves.

So that’s my project right there.

She needs to understand that it’s okay to be without us, that we’re going to be here when she gets back and that she can branch off.

As scary as it is for mom and dad and for Shiloh, she needs to develop that independence away from us.

I love you movie too.

The key to making Shiloh more independent is her ability to move around without the help of her parents.

Today, her father, elmer, is taking Shiloh to the hospital for a consultation regarding her mobility.

Over the years.

We really have had to shift gears in terms of Shiloh’s care and where we’re going with things.

At one point it was all about survival and the leg separation.

It was literally.

Was she going to be here from day to day?

And now we’re sort of shifting over into where she’s going in her life, who she’s going to be?

How do we get her more mobile?

Is is really the issue.

You’re upstairs quite a bit and we need to be able to make sure we can get you out of the house.

Right, don’t tell me, mom was talking to you about getting me gay, about me scooting me down the stairs.

Yeah, That’s what she was talking about, and i, no, she wants me to do it.

I can’t believe that.

Well, what’s?

Why don’t you want to go down the stairs?

Chylo’s diet also plays a big part in her mobility.

When she was sick and underweight, she was allowed to eat whatever she wanted, but doctors became concerned that she was putting on too much weight and advised that she adopted a more healthy diet.

In the years since we last visited Shiloh, her weight has increased slightly.

The key things that we still have to do is monitor her diet, make sure that what she takes in is going to be complementary to her body.

It’s not gonna.

You know, it’s not a bunch of crap, although she really likes crap.

What’s this?

That’s her one sweet thing she could have for dessert at night after her meal.

All right, with a kidney patient, it doesn’t matter what it is, as long as it’s caloric.

Get her some calories.

So we did and, and which was fine, except-

And then she got the kidney

And she becomes normal, and then everything changes.

So then you have to backpedal.

This is the other thing we have to worry about.

See the 19th garbage.

It’s all sugar, yes, but that’s if i drain the syrup out.

She’s just getting the fruit.

Okay, all right, but still it’s been soaking in the sugar.

It’s better, i know, i know, it’s better, you know, but while her parents both understand the

It’s so hard because i can’t take her shopping.

I can’t get her down the stairs and in the car to go shopping.

So i have to rely on elmer-

You get caught in a rock and a hard place- and where he wants to keep her and keep her safe and keep her alive, and me, who wants to push her to have a quality of life and have more.

I want more for her.

Her being alive used to be enough and it is enough.

I know that, but now you know, let’s push for some quality.

If Shiloh is to compete in the swim meet and go to summer camp, her parents will have to settle their differences.

Shilo pepin suffers from mermaid syndrome, a rare condition that means her legs are fused together.

She has required constant medical attention throughout her life, but in recent months her health has improved.

After years of doing everything together just to keep her alive, her parents now find themselves wanting different things for Shiloh.

As a result, their relationship has suffered.

I just started realizing that we had changed, that what he wanted isn’t what i wanted, that we were fighting more often because i was unhappy and, quite honestly, the, the spark or the, the thing that was there in the beginning, wasn’t there anymore.

We have separated, basically because we lost ourselves in the midst of all this.

It’s toward the heart and soul out of me and, uh, it’s hurting me very bad.

Just because you weren’t getting the voice doesn’t mean you both can’t love me.

I know that i’ve got to move on and that part of our lives is over now.

I had decided back in November through different circumstances that i really didn’t love elmer anymore.

I i loved him as their father, but the emotions weren’t there.

We were fighting constantly about how to raise her.

We were fighting constantly about him taking care of her and not doing this and doing that.

No divorce means that parents aren’t and love each other anymore.

I don’t want them to get a divorce, but this is the way it’s got to be.

I would love my mom to get back together, but they can’t because they don’t love each other.

It feels sad.

A couple of weeks after the separation, Elmer moved out of the family home and is now living with his mother, but he is still Shiloh’s full-time caregiver and looks after her while Leslie is at work.

Once they get there, they need to find a way to get Shiloh into her wheelchair.

Oh so, you want me to use that board all the way into my chair.

Yep, ah, clever, just because we’re different doesn’t mean we can’t be smart.

That’s right exactly.

Wow, hold on all right.