Additional Needs

All of Us, Son, Love All of You

Posted by Emily Barbero on 27th February 2015 Additional Needs, Advice & Support, Disabilities

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9:35 p.m.

He is sleeping.

I have had a headache since the day before yesterday.

In the quiet, with every blink, I feel my upper eyelashes pat against the puffy purple bags beneath my eyes.

I sit.

I am huddled in a leather recliner next to his isolette.

I watch him breathe.

Tonight is good and kind and quiet for him.

His breathing is smooth, in and out, butter melting as it's spread on toast.

Even still, I try not to count his ribs as his three-pound body inhales.

Martha, his night nurse, bounds into the room.

Martha is renowned on the unit for her electrical energy, often pulling double shifts without missing a beat.

She logs onto the computer.

Her hair pulled back, her shoulders high, her elbows animated as she moves the mouse and types. I've never before met a woman who has animated elbows.

"How was your day?  How's our boy?" Martha asks, washes her hands, rocks back on her sneakered heels.

I felt brave, brave enough to tell the truth.

Or too tired to care.

Not sure.

Maybe I simply felt safe with Martha.

"This is too hard," I tell her. "How am I supposed to keep doing this every day?"

"You're doing great," she says, looking confused.

Leave it to Martha.

She's so black and white.

For a moment, I don't think she'll understand me if I keep going.

Then.

I watch her gently cradle his head in her hand.

She turns it to the side to check the central line running into his skull.

She does it so tenderly that he doesn't even wake.

She cares for him with an exquisite love, one that can't be learned in a textbook or classroom.

On second thought.

Maybe she will understand me.

"Martha, every day I'm waiting, watching, looking for a definitive answer."

"We don't know what's wrong because of his brain bleed, and they say we won't know until he's much older."

"How can I wait that long?  How can I watch each day? I keep looking for signs for things that are wrong.

I feel responsible to see it first and tell the doctors or they'll miss it. It's enough to drive me insane."

It's all out.

My headache eases.

Martha turns on the pump and it begins to feed him through the tube.

Then she looks straight at me.

It makes me uneasy.

Half of her face is illuminated from the harsh billi light, the other half is in the cool shadows of the room.

For the first time to me, she looks tired.

Her brows soften, her eyes fill with something beyond us, in this room, in this moment.

It is compassion, empathy, that assuages her energy.

When she speaks, her voice carries an edge.

"You're absolutely right. Brain injuries are tough. You won't know until you are long gone from this place. But you know what?"

I hang on her every word.

"When you choose to have a child, you do not order-up a baby. You sign-up to parent the child you're entrusted with - the one you have, the one who is counting on you.

 If you only want to parent the perfect baby you want to have, you have no business becoming a parent."

I don't think she would have said that to every parent.

And not every parent would find hope in that fortune cookie moment.

Yet, magically, intuitively, maybe even spiritually, she knew, right there, right then, that I needed to hear those words.

She knew I needed a reminder that my son needed me, and I had an open invitation to cherish him exactly as he is, right now, tomorrow, and ever after.

No matter what happens.

I am a woman.

A rather ordinary woman.

And now I am a mother.

A rather extraordinary job.

He is a boy.

True, a boy with a brain bleed, and hiccups, and a mess of black hair.

He is mine.

We are connected.

By divination, by blood, by legalities, by the thread that stitches together our yesterdays, todays, and tomorrows.

These are our moments, our life.

"I'd like to hold him," I barely whisper.

"That is a very good idea," she says. "He likes that very much.  Hold him any time you want, for as long as you want."

We wrap him in a fleece blanket, ease him out of the isolette.

A tangled mess of cords trail behind him.

He opens his eyes for a moment, looks up at me.

I settle back into the recliner.

"Thank you, Martha."  I look up.

She's gone.

She's giving us our moment, our lives together.

"We love you," I say.

And it is true.

We do.

All of us.

All of us, son, love all of you.