Saturday, March 12, 2011


Michaela and I have a nighttime routine. Thankfully, she’s not extremely attached to it, or nights out without me would be horrific. But when it’s a normal night, we do the same things to get her ready for bed. She’ll even remind me if I miss a step.

Get undressed and into PJs.

Pull down the cover of her bed.

Arrange a wet pad for midnight accidents.

She gets halfway into the bed, and won’t lay down until I take off any shoes or socks she’s still wearing.

Take off the VNS ankle bracelet and lay it on the bedside table.

“Mama, the pillow...”

Oh, right, I forgot a drool bib for the pillow (so she doesn’t lay in a puddle).

She flops onto her right side and I cover her up.

Then I mix the meds. 3 pills get crushed, 2 liquid meds. Mix it all up in a vial with some water and flush it down her g-tube.

Re-cover her.

Pull up the railings.

Stuff pillows into the railings for padding.

Turn on her radio.

Turn on her breathing monitor. It starts to bip with the rhythmic movement of her chest.

Then comes my favorite part. I’ll pray for her, usually saying much of the same things I’ve been saying for years, “Thank you God for a good day. Please let her sleep with no seizures tonight. Please give her a good day tomorrow.” She often will say the closing “Amen,” and I’ll lean in to kiss her on the left, soft, puffy exposed cheek.

But my absolute favorite part is right before the lights go out, but after the kiss. The way she lays, the left side of her neck is exposed. I like to bury my face there and just drink her in. All the familiar smells of just her. It’s such a soft spot that I have no doubt I could easily fall asleep there. I still can’t believe I survived a month without this routine. Without this particular ritual.

“You love me Mama?”

“Yes, baby. Mama loves you.”

A couple more kisses on that squishy close to the scar where the VNS was placed...but far enough away to feel like newborn skin. A couple more deep breaths of that familiar smell, and I finally pull away.

“Goodnight, Boo.”