Pfeiffer Syndrome: Discovering Companionship in the Quiet of the Journey” (Video.)

This is gonna be awesome.

This is gonna be fun making new friends.

Beth, I’m here to be your friend.

If you want to be friends, yeah, you me, you friends.

If you want to be friends with me, give me a big ol high-five, my friend.

Welcome to Sbs K. join me as I travel around the world, an interview individuals living with a condition to prove.

No matter how you communicate but what obstacles you face, you’re always deserving of love and acceptance.

So, without hesitation, let’s meet today’s friend.

I’m having a really good time with you.

And now I’m gonna take the camera, zoom it out just a little bit.

Do you like that here?

We’ll go in, we’ll go out, we’ll shake it all about, we’ll do a little twist the end.

I forget the worst of the song, and that’s what it’s all about.

Ooh, I know I’m incredibly corny.

Well, that’s okay, because we’re having fun.

You need to get to know Beth before you judge Beth.

Oh, my guess that would be my main thing is you need to know her before you just straight-up Passed judgment that she looks weird.

She’s perfect to me, I mean, no matter what her head or everything looks, you know she’s my daughter, you know what.

So I mean I love her in your unconditionally.

If someone wants to be best friend, what should they do?

Yeah, I really appreciate when other parents bring their kids over and kind of make that initiative and just say something simple.

I mean just when a mom comes over and says: oh, you know, look at her shirt, don’t you love that color too?

You both love pink.

So just at this age it’s easy to find common things that kids like together.

So I think that’s big.

At this age is just the parent coming over and us showing being an example for the kids on how to introduce.

Does that happen often?

I wish I could say yes, but it doesn’t.

There we are, my friend, two superstars on camera doing the best interview ever.

Yeah, give me some skin.

Are you having fun?

If you’re having fun, make a silly sound like this.

I heard that one.

That was a good silly sound.

What about this one?

That was an amazing silly sound, even though she can’t, you know, verbally tell you what she wants and stuff like.

I know she understands.

Cuz.

There’s definitely times where you can tell her one thing or the other and either it makes her happy or makes her mad.

Like she, she can definitely tell you, yes or no, whether she’d like something or not, she understands what we’re saying and even when she’s making noises in her head, she’s thinking the words, but she just can’t form them.

Yes, suspenders are coming back in style.

Do you like them?

I’m trying to bring them back.

Everyone just makes fun of me.

They say: why are you doing what?

Are you?

Wear these suspenders?

You know what.

I think suspenders are cool.

If you think they’re cool, give me a high five, because it’s really easy when a child is considered non-verbal, maybe to talk to them more, as you would a baby or someone younger, and we just have to remember.

No, she’s four, so everything we say she understands, like any other four-year-old, and I know that if she could talk she’ll be very sassy.

And how she would respond, I’m sure, to mom and daddy.

I mean she’s a normal four-year-old.

Um, you know she enjoys doing things like a normal four-year-old kid would do.

Just because she looks different doesn’t mean that she should be treated different.

Tell me about how much you love your granddaughter.

I think it’s that somebody said if you known how grand, how wonderful grandchildren would then been, you’d had them first.

So we just love her so much she’s, and she has my name, so that makes it even more special.

Unfortunately, we didn’t have a heads up that anything was wrong beforehand.

All the ultrasounds came back normal.

The the genetic testing doesn’t test for or Pfeiffer because it is so rare.

So, genetic testing, they come back normal.

Then when the doctor said, you know, get your camera ready, we’re about to pull her out, he did.

I mean he pulled her out and their room was just silent.

I mean it was.

It was just silent.

When you look at Beth, what do you see?

Well, I have to be honest.

At first it was, it was a little scary, a little overwhelming, but now I just see.

Bad, you know, I just see, I’ll just see our baby girl.

So she’s just.

There’s nothing different about her, she’s, she’s normal to us.

We’re gonna zoom in all the way up our nose and see some boogers, just kidding.

You have a good sense of humor, though.

What went through your mind the first time you saw that?

What can I do to fix it?

You know, I guess that’s why your typical dad thing is.

How can I talk enough, fix it, you know.

Like, what can I do?

 

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