When you last heard from me, I left you with the news that whatever curse has befallen the Wise Family was slowly picking off members of my family days before Christmas. I’m happy to report that both Alex and the Kid recovered. After Christmas, we were supposed to go to my hometown to visit my parents and see my sister and her family. I committed to going to Abilene, whether or not I had to drive a hearse carrying the sick and dying corpses of my family, but we were able to make it in our regular car so that’s good.
After that, The Kid “cleaned” our laptop so vigorously that we had the special opportunity of needing to replace the keyboard and so writing was put on pause.
I’m actually currently writing to you from the bowels of yet another hospital room, for The Baby this time. Alex took him to the Emergency Room last night for breathing-related troubles, after performing our depressingly familiar routine of running through the house putting a hospital go-bag together with food, chargers, warm socks, and trail mix. Today, the pale yellow walls of our irregularly shaped hospital room make me feel vaguely ill and I just mistakenly watched a plastic surgery consultation on the TV that shocked me so terribly I began laugh/crying. My wails could probably be heard from down the hallway.
When we first met the baby, he’d already been in the NICU for several months. He was so small and his body was connected to all these wires that connected him to all these machines. It was almost impossible to pick him up and hold him. The constant alarms were maddening and frightening, until we got to know which ones to pay attention to. After a few weeks, I got braver and would hold him despite the wires. I got good a deftly sticking them back in when I inevitably knocked them out of place. Otherwise, a nurse would have had to stand directly beside me, sticking the monitoring equipment back where it belonged on a wiggly infant.
I can’t count how many times we’ve peeled the sticky pads of chest leads off his flimsy hospital gown and stuck them back above his left nipple. How many times have we had to jam the colored wires monitoring his heart rate back into their connecting piece, trying to remember which color goes where so the machine will stop alarming? Even now, I have to periodically stop writing to plug his oxygen monitor back in because he keeps getting wrapped up in the cord and pulling himself free. Even if he could walk, he wouldn’t really be free to move as he pleased unless he dragged his machines behind him.
He cannot leave- the ordeal is not over- until the wires come off.
We are so tired of wires.
I want to metaphorically know when the wires come off.
Excuse me, sir. May I be discharged from suffering, please? Free me from these pesky problems and let me be on my way.
True talk, my coming to grips with the reality that we might never really be free of metaphorical wires again comes and goes. Some days, I’m brave and I can face that reality head-on. Other days, I’m fearful and I just want to cower in bed.
Some of this is just what it’s like to be a parent. And some of it is unique to parenting children with special needs.
All of it is exhausting.
Alex got me a Roomba for Christmas. This is not something I necessarily knew that I needed, but they were on sale and we figured it could take some of the load off of the day-to-day task of not letting all of our to-do’s come crashing down around us.
I’m in love.
Flossie, as we named her, sits quietly in the corner of our dining room until we summon her to begin her task. She toodles around the house, picking up stray leaves, dog hair, and the crumbs of messy eaters. Occasionally, she gets stuck and sends an SOS message to my phone (the first of which said, “Flossie is stuck on a cliff” and when I got home to rescue her, I expected her to be teetering precariously on the edge of a stair instead of wedged stupidly under a side table).
I like to picture her as if she was a sentient robot vacuum, like in a Pixar movie, with the personality of a bucking bronco, eager to get back out there and sweep up breakfast’s mess. Even though Flossie was made to vacuum, to ping pong around a house picking up the rubbish we’ve left behind, she still needs to head back to her docking station to recharge her batteries. Although Flossie was specifically created to be wireless, a charging cord is still a necessary part of her operating procedure.
I’m coming to grips with the reality that for most of us, like my imaginarily sentient robot vacuum friend, wires are just a necessary part of life. We cannot just run around aimlessly free forever. Even if we feel like we were created for something different, if we yearn to run free, shit’s gonna happen. Our batteries will run down. We’ll be overly ambitious and get “stuck on a cliff”.
While I still hate wires, I’m begrudgingly beginning to understand that perhaps they serve a purpose. These wires- ill-timed sicknesses, problems that I just can’t seem to solve, the frustratingly slow pace of The Baby’s development, insane Texas weather- make me slow down and try to be more mindful about what’s going right in my life. Wires make me dependent on other people, which is a humbling and necessary and beautiful part of being human. Wires help me feel empathy for others. Wires give me a sense of humor about feeling out of control.
Most importantly, wires savagely relieve me of the tempting lie that I can wholly control anything in life, even though society is quick to sell me a solution to becoming fully wireless. This revelation alone, when I’m able to remember it, is worth the hassle of being encumbered by wires sometimes.
Would I love to be wireless forever, bebopping around life like I hadn’t a care in the world? Of course. Flossie, my hard-working robot friend, would also love to do her job without the unpleasant task of being docked back at home base while her batteries recharge. Alas, that’s not how we were created. Maybe someday we can come to grips with it.
Here’s to living life well, with and without wires.
(Oh, and, we’ll be discharged today so I’m waiting impatiently for the nurse to come physically remove all these wires from my child so we can run away from this place.)
I love it!
AGAIN I am delighted by your uses of humor.
Your descriptions are engaging.
You harness storytelling to convey a meaningful message with grace.
Note that besides wires that are related to electricity there are other kinds of lifelines. Consider sleep, rest, and solitude that Americans seem to neglect.
In the human soul, there seems to be a longing for freedom and independence. Yet the body and soul do not have an endless source of energy. We need food, shelter, and relationships to operate optimally. So we cannot just jet around the world as a totally free spirit without any cares.
Yes yes yes, john. We are trying to work on self care. As always, i appreicate your wisdom and readership
There is no personal condemnation intended in my comment. Your stories just inspired that insight.
I wish that self-care was normal when I was in my teens.
Making the self-care activities common feels like installing a modern kitchen in the log cabin of my ingrained habits formed over decades.
I feel the same way. And as a parent, i know i am not modeling self care the way that I want to, which makes me a little fearful
The longer I live the more I consider parenting as Mission Impossible.