Kintropy In Action

"'L 'un!"

We were finishing up dinner.  Gabriel sat to my right, protecting his carrots from Hannah's increasingly good reach.  Janette and I were busy translating Hannah-speech.

"All done, Hannah?"

"'L 'un, m'ah-ah," Hannah confirmed.

"She said, 'All done, mama!'," I repeated.  "All done, mama?"

"'L 'un, 'L 'un."

Janette complimented Hannah on communicating well and began transferring Hannah from wheelchair to floor.

Hannah clapped.  "Aye."

Hannah was now sitting on the floor.  Like a game of charades, Gabriel and I believed we had solved the puzzle, repeating back to Hannah, "All done, Mama. Bye!"

Hannah grinned broadly and shouted, "Yeah!"

In other words:  yeah, you understood me!  Good job, family!

As a parent, I belatedly celebrate my kids' every success; I am always 1-2 steps behind them.  Letting go of the prior achievements, the prior stage, the prior understanding is the hardest part.

With Hannah, I'm still stuck in trach management mentality, waiting for the next hiccup, the next emergency room admittance, the new diagnosis.  Meanwhile, back at the Ranch, Hannah is developing language and communication skills with the clear intent of manipulating we subjects who serve her.

She is growing, and I am slowly switching gears to catch up.  Hannah is spending more time with her peers at preschool.  Preschool provides her a smorgesboard of tips and tricks to employ at home.  I, however, am fighting the last battle for Hannah (medical complications) and preparing to fight the next alongside her, whatever that may be.

Even early this morning, as I write at 4am, Hannah and I are sizing each other up.  This time it's reversed.  I am ready to give Hannah some alone-time in her room.  Time to process.  Time to think.  Time to settle down.  Time to get back to sleep.

She is not.  For four years, she has had 24/7 in-room support.  The ventilator, trach, and feeding equipment and needs required it.  Today, we are graduating to just trach and feeding support.  In a few months, it may be just feeding support.  Correspondingly and appropriately, our nursing hours are being cut back.  Hannah needs to develop a new skill and understanding:  alone-time and privacy are good things.

I am writing from our adjacent office:  a perfect position for listening and watching for any medical needs, but just far enough out of her line-of-sight to give Hannah some space.  She is having none of it, of course.  She is tossing and turning, crying, trying to get her pulseox to speak for her and call me back into the room.

And I do go back in to check on her.  If everything is medically ok, she gets a brief arm hug (which she clings lovingly to), a reminder that I am in the next room, and a stern warning that it... is time...to go... TO SLEEP!

Letting go - of prior conceptions for both of us (and of my arm, for one of us) - is the hardest part.  Ultimately, it makes us all stronger, but it's hard to recognize that because you're already past that milestone marker and trying to catch up to the next.