Favorite Thing about Your Granddaughter

– What’s your favorite thing about your granddaughter?

Oh well, that’s hard, because just about everything She’s amazing.

She’s the joy of my life.

Yes, Yes, you are.

We’re kind of joined at the hip.

Yeah, I was there the minute she was born and it was a thrill. –

Hadley has a big smile on right now.

– Well, cool, I have a big smile on my face and in my heart.

– What do you think is making her smile?

– Hey, she’s comfortable, She’s safe, She knows these things and she’s aware.

She is aware of her puppy, she’s aware of her daddy and we’re just having a good day.

What do you think when you see that big, beautiful smile?

– Life is good.

That’s what I think.

You know that my daughter is present, that she’s aware and that, all things considered, she’s choosing to be happy today. –

All right, Hadley, let’s have some fun.

I’m really excited to be here with you today, to be your friend (Hadley vocalizing).

I’ve heard wonderful things about you.

I’ve heard you’re a lot of fun.

(Hadley vocalizing). –

Just because you don’t have words doesn’t mean you can’t communicate.

She has a lot to say and a lot of that is through emoting facial expressions.

So I thought I’d come sit beside you, be your friend, have a good time and hang out.

Would you like to be friends?

(Hadley vocalizing).

I’d like to be friends too (Hadley vocalizing).

Favorite Part of Being Hadley’s Mom

And I think, like after the first really big one, which was when she was like three months old, I was like: wow, we are on a journey.

I think it became more real of what her life and our life with her was gonna be, And it wasn’t a bad thing.

It was a great thing – I have six other grandchildren and all of them are special.

But she needs me more, And I think that’s how that’ll always be – In what ways does she need you more?

– Well, obviously she just needs total.

She’s a total care person And that probably will always be that way.

But I don’t know she connects with everyone.

She has such a loving family and they’re so balanced.

Hadley’s Relationship with the Puppy

– Tell me about Hadley’s relationship with the puppy.

– She lives with her best friend.

This is Bo, And they take care of each other, and he takes care of her, and that’s a wonderful thing to have. –

How does he take care of her? –

He checks on her.

He makes sure that she’s comfortable.

Bo tends to position himself where she can touch him.

He sits by her and comforts her.

He gives a kiss every now and then He’s just.

He’s there.

That’s what a good friend should be. –

Are you getting sleepy?

Are we making you tired?

You are totally snoring. –

Does she sleep with her eye closed? –

Yeah – Her eye open, I mean –

This is her prosthetic eye, which is so awesome.

It looks so good.

You wouldn’t know, but this is her real eye, And so I can tell by it’s shutting that she is asleep.

When somebody meets Hadley for the first time, what do you hope they think? –

What do I hope they think?

I hope they think that she’s loved and cared about and that she is getting what she needs.

I hope that they just know that she’s adored – I don’t think anyone could love her more than I do.

What do you think?

(laughs) (Hadley vocalizing).

Yeah, I know, I know, baby –

It brings me a lot of joy to be here with you (Hadley vocalizing), to meet you (Hadley vocalizing), To talk to you (Hadley vocalizing), To hang out with you and your family.

(Hadley vocalizing).

I’m having a great time with you.

(Hadley vocalizing).

What are Hadley’s diagnoses?

– Hadley, we were figuring out from when I was pregnant, starting around 23 weeks, trying to figure out what was going on, and it was really scary time.

We figured out through amniocentesis and finally ordering the right test for the amniocentesis, that she had an Fgfr2 gene mutation which could have put her in the family of a cranial facial anomaly, being Aperts, Crouzon or Pfeiffer.

We thought it was Crouzon based upon what they could see from ultrasound, But it turns out it’s she most likely fits the bill for Pfeiffer syndrome.

And then she had an anoxic event where she was building up CO2, and it ended up giving a really bad seizure that lasted like almost a hundred minutes, And with that then she had cerebral palsy.

From that – How old was she when that happened? –

She was, That was April of 18, so about 18 months-ish.

It was really scary.

Pfeiffer Syndrome

21 months maybe, yeah – Pfeiffer syndrome is when the bones in the skull.

They fuse earlier than than most babies would have.

So it’s just bones fusing too soon, And that limits the room for the brain to grow without surgical intervention.

– When you have a typical child, you just go by all those milestones.

When you have a child that maybe isn’t so typical, you start to realize it’s okay that they’re at their own pace.

– How old is Hadley? –

Hadley is six. –

How have you seen her grow in their six years? –

In six I’ve seen her interests expand.

I’ve seen her preferences cement themselves.

e a child and they’re gonna be good at this, or they’re gonna do this and that, And that’s not how it works.

Your children are their own person And you do.

You accept them for who they are and help them grow in the ways that they’re supposed to 

Grammy is our angel.

So Grammy is Andrew’s mom.

My mom passed away when I was 25..

So she is the most amazing person

And I don’t know what we would do without her, but I feel like this is Grammy’s baby

– We cheat a lot when she stays at my house.

Grammy and Hadley stay up and we taste ice cream and we have slumber parties.

I don’t keep her on her schedule.

What’s Your Favorite Way that She Expresses Love

We do whatever Hadley wants, because that’s what grandmas do – What’s your favorite way that she expresses love? –

Her cues are very subtle, but she’s got a lot of them.

So you know, if you pick her up and she’s been waiting for you to pick her up or snuggle, she’ll just go.

(sighs)

You get the biggest sighs right, Yes, and then you can look at me, you can see me better, so we can talk.

Yes – Do you like when people talk directly to Hadley? –

Yeah, I think it’s great.

I think talking directly is something that most people enjoy and appreciate.

They want to be acknowledged, that they want their presence to be acknowledged.

– Thank you for taking the time to interact with me.

(Hadley vocalizing).

It makes me happy that we’re having a conversation and interacting and getting to know one another.

(Hadley vocalizing).

– I don’t know how much she’s taking in of what people are saying to her or acknowledging, but she has some sort of hearing loss, but we can’t tell what part and how we can help her the best with that.

So I think, just like by being loud and in her face, trying to figure out where is the best spot in her face, where she can see you the best, that that helps – One of the coolest things about you and your family is how much you love each other.

(Hadley vocalizing).

I loved hearing all about how your mom and dad love you and how much joy you bring them.

(Hadley vocalizing).

I can tell you all have a lot of fun together.

– We shouldn’t sell anyone short.

We shouldn’t second guess what someone’s capable of.

We need to give them the opportunity and we might be surprised.

We’ll be surprised by what she can do.

– When somebody finishes this video, what’s the most important thing you hope they learned?