Holding Moses: Motherhood in the Face of Disability

[whimsical music notes]

[water dripping]

[soft instrumental music]

[water boiling]

[Randi] A newborn should cry,

and start breathing calmly.

[tea kettle whistling]

Moses was laboring too hard.

[uptempo whimsical music]

His belly was pumping to try to get air,

[strained breathing] and he could barely cry,

and he couldn’t move, and he couldn’t open his eyes.

And I would just watch him,

and I would just wait for him to snap out of it.

[uptempo whimsical music]

And I was like,

Is this gonna be the day you open your eyes?

[light clicks on]

[uptempo whimsical music] [fabric shuffling]

And he just lied there.

And he was so still, and he was so beautiful.

[uptempo whimsical music]

[fabric shuffling]

I had no idea what I was in for.

[fabric shuffling]

[uptempo whimsical music]

[light clicks off]

[sprinkler heads spitting]

[car engines humming]

[sprinkler heads spitting]

[car engines humming]

[glass clicking]

[stomping and drumming] [audience laughing]

Stomp is a show where people use body percussion,

and everyday instruments to make music together.

[stomping] [audience laughing]

One thing I knew when I got into Stomp was,

that I had no idea how the hell I was ever going

to perform the show, ’cause I couldn’t even

understand those rhythms that they were doing.

And I was like, When are they gonna kick me out?

[clapping and stomping]

The next day I would come in,

and everything we had learned the day before,

was somehow there.

[stomping and clapping]

[soft instrumental music]

There was a trust that happened.

I couldn’t see outta my eyes,

and I couldn’t hear out of my ears,

but I could do the rhythms that were given to me.

[stomping and clapping]

[loud stomping and clapping]

[soft ethereal music]

[clapping]

[laughing] You make such a cute face when you do it, though.

I don’t know!

[Randi] Come on, one more time. [clapping]

Just follow me. [clapping]

I always knew I wanted to have kids. [clapping]

I just wanted that experience pretty desperately.

From like, an early age.

[clapping]

Yeah! And then that again. [clapping]

[clapping]

Yes!

Yes.

[Randi] And then, and then just- [clapping]

[Tavi] [mumbling]

[Randi] My ex had my oldest daughter, Tavi.

Do a clap, clap.

And then you do, like, that rhythm thingy.

Then you clap to clap.

I’m just gonna tuck you in.

And I’ll keep checking on you.

And it went really well.

[Both] I love you, too. I love you, too.

I love you, too, oo, oo.

[Randi] And I thought, I’m ready to do this.

[Tavi] See you in the morning.

[uptempo music]

[Randi] The midwife came over,

and turkey baster style, pushed some sperm into me,

and I got pregnant the very first time.

[water running] [dishes clattering]

It was a good birth.

I was so excited, and the doctor was so moved.

I don’t know that she had seen a lot of queer families.

It felt like we did it, now we have our family.

[items falling]

[Moses] Ooh.

[sobbing]

[Randi consoling Moses]

[sobbing]

[soft instrumental music]

Open please. Open please.

[toothbrush rubbing]

No biting. I’m faster.

[toothbrush rubbing]

No biting, please. [toothbrush squeaking]

Good work. Good work.

I thought there was one kind of disabled child,

and that was a Down Syndrome child.

I had no idea the spectrum of disability that exists.

[soft instrumental music]

Moses has a rare genetic disorder called,

Phelan-McDermid Syndrome.

Essentially, he’s missing a chunk of his 22nd chromosome

in all of his cells.

I know, I know, I know, I know.

[Moses giggling]

[laughing] Oh, I know.

[laughing] So exciting.

[soft instrumental music]

[kisses] But, you look cute now!

Although, you always look cute.

[Randi] All of his physical systems,

his intellectual systems,

everything is completely compromised.

[Nurse] Press and then clamp at the end.

[Randi] Now, given that severity,

he is remarkably present.

Where’s Moses? [Moses cooing]

Moses! Where are you?

Oh, my goodness, there you are! [Moses giggling]

There you are!

[fabric shuffling]

And he’s connected, and he looks at you,

and he knows you, and he recognizes you.

His disposition is extremely sweet.

More Superman? [Moses grunting]

More Superman? [mouth swooshing noises]

He’s just a little kid that likes to be mischievous,

and get in trouble, and play, and laugh.

Ah! You’re flying buddy!

[soft instrumental music] [feet stepping]

It’s just a matter of letting go

of the child that you always think you’re gonna have.

[Moses grunting] [hand patting]

I know, I know, I know,

but we’re not gonna go outside right now, okay?

[soft instrumental music]

I’ll get you some food.

It felt very much like I lost a child.

Okay.

That he had died.

It’s okay. [kisses] Let’s go around.

[wind whirring] [rocks crunching]

Yet, I was still there with a child,

that I didn’t understand.

[grass rustling] [soft instrumental music]

I’ve never felt so desperate before.

[soft ethereal music]

They needed to go get some more sperm,

and impregnate me, and I needed to do it over.

[soft ethereal music] [rain tapping]

It feels like such a heavy,

heavy burden that I did not know how to hold.

And I felt unequipped to handle.

[rain tapping] [soft instrumental music]

I felt like I was losing my independence,

and my ability to be the person that I wanted to be

in the world.

[pensive music]

It was, a, [labored breathing] [soft instrumental music]

shocking because in the throes

of being given the greatest gift of life, which is like,

birthing a child from your body,

but, instead I was given the hardest thing,

that I’d ever even given.

I felt like I lost everything.

[soft ethereal music] [rain tapping]

[hands banging] [Moses groaning]

I wanted him to die-

[Moses mumbling]

and I wanted him to die quickly.

[soft pensive music] [rain tapping]

And, I didn’t want it to hurt.

[soft pensive music] [shower water running]

[soft pensive music]

[wind whirring] [birds chirping]

[grass ripping] [machines roaring]

So, when I was 22, I went to Japan

to a farm called Body Weather.

This teacher of, Butoh Dance, named Mintinaka,

he would work our asses off all day on the farm.

[machines roaring]

And then, around five o’clock he would invite us

to the stage.

[soft instrumental music]

Farm all day, you are tired, you are raw.

That was the point.

You don’t have your capacities to say no.

So your willingness, your heart,

your body open so much more.

[soft instrumental music]

And Min would just say over and over, stretch farther.

[inspiring instrumental music]

[ground crackling] [birds chirping]

Really acutely, for the first two years,

I think I cried for hours every day.

[birds chirping] [deep breathing]

But, then I started to,

like, resource people who also had disabled children.

[soft instrumental music]

Hear about their children, and they sounded so cute,

and sweet and they had like lives.

Like, they were talking about school, and the spring break,

What are we gonna do?

I was like, why aren’t they saying,

I’m devastated that I have been given this child?

I don’t know how to love my kid and I’m scared, you know?

And, they would just look at me,

and they’d shake their heads,

and they’d be like, We know, we know.

[slow melodic music]

I think time handles the grief for you, as you withstand it.

[ethereal singing music]

Then, I got together with this one woman,

who has a profoundly disabled son.

His name is Joaquin.

[ethereal singing music]

And her, and her husband came,

and Joaquin was in a wheelchair,

[shoes plop]

and they got him onto the trampoline and he couldn’t sit up,

and his dad got on the trampoline with him.

And then I, I watched Joaquin just hold his dad’s face

in his hands and,

and his dad was accepting that love as enough.

[soft ethereal music]

And I was like, Oh my God.

That is like, the most beautiful thing I’ve ever seen.

Okay, fly. No? Fly!

Fly! Hands up! Reach! Woooaahh!

[lips buzzing] [hands patting]

[Moses giggling] Uh oh, uh oh! And, I got you!

[Moses giggling]

Moses hugs with like, with complete abandon.

[soft ethereal music]

He just, pushes his way to the essence of my being.

[soft ethereal music]

It’s overwhelming, especially when it’s coming

from a child who appears to be missing so much.

Where’s my high five? Where’s my high five?

[soft instrumental music]

Kesher, hold on to me.

[soft instrumental music] [ground crunching]

After Moses was born, I waited four years

to have another child.

[laughing] You dancing over there? [feet shuffling]

[Kesher speaking gibberish]

[Tavi] Okay, so you catch one. I’m gonna catch one.

[Randi] I needed to wait,

until I didn’t feel like I needed to do anything over.

Whoa! Whoa. You okay, Kesh?

[Kesher] Ow!

Oh, you just landed right on the hard thing.

[Kesher] Ow!

[Randi] Let’s brush you off.

[Kesher] [whining] Ow.

[Randi] Alright. Dance it out. Dance it out.

Dance it out.

[cheerful acoustic music]

My time dancing prepared me perfectly to connect with Moses.

[cheerful acoustic music]

This kid that I had to learn how to love,

loves so fluidly, with such ease.

[guitar strumming] Wait a minute. [string popping]

Wait a minute. [Moses cooing]

Again. [muffled strumming]

He in fact, was really, my teacher of how

to love him because he did it

from day one just with his complete and total self.

♪ There’s a boy named Moses ♪

♪ I know him just so well ♪

[Moses cooing]

♪ He likes play guitar sometimes ♪

♪ And he plays it so well ♪

♪ Moses, Moses ♪

[Randi] He hasn’t changed at all.

♪ Oh, yes I love you ♪

[Randi] I’m the one that had to change.

♪ You’re playing the song with me tonight ♪

[Moses cooing]

♪ Playing nice again ♪

[Moses cooing] [Randi laughing]

♪ Ha ♪

[stomping and clapping]