I haven’t been writing a whole lot. Part of this is because I have been sick for the last ten days and the only things that interest me are sleeping and not coughing.
Part of this is because of a cloak of ennui has wrapped itself around me–a nice, soft, velvety cloak of weirdly complacent intellectual boredom.
I have stopped reading. I had been devouring Tana French murder mysteries, up until late one night when Jeff was away working and the boys were sleeping, and the TV in the kitchen turned on, blaring loudly, BY ITSELF and I wanted to die, but instead I crept downstairs and turned it off like the warrior princess I am. I’ve since decided to lay off the murder mysteries for now.
But my brain also just can’t focus. Reading? Writing? What, why? All I care about currently is cough syrup and the mint chocolate chip ice cream that feels nice on my throat.
This could be because I am always questioning my writing content. Is it just more of the same? Is it simply processed and re-formed sentences about my version of spirituality? Do I even have anything to say? Ugh and also blar.
Because my brain isn’t firing on all cylinders, I offer you a few vignettes loosely related to special-needs parenting. Or my take on doing life. Or something.
Truman at OT
Truman has taken a real shining to occupational therapy because it involves a giant gym, which includes a zip line. So he’s a fan. Also, we now know how to talk about his inner “engine” and how fast it’s working and how we can effectively slow it down at times. It’s terrific.
I noticed in the waiting room that all the other moms were much younger than me, except the grandma who brought one child. One woman followed her preschool-aged son around with the backpack and tubing connected to his trach. She was petite and energetic, and at the beginning of her SN parenting journey.
If I’m being completely honest, I’ll tell you that I felt like a wizened husk of a parent. “I’ve done this so many times before with so many of my children,” I thought. This is like literally my fourth rodeo and I’m not so much jaded as I am tired of pretending to be bouncy about disabilities.
One thing remains consistent, I bought Truman a celebratory Happy Meal and myself a crisp Diet Coke when we were finished. We have always used drive-thrus as a means of reward and survival. Yay drive-thrus.
We haven’t seen Jack since August, which is the way it goes when he lives three hours away and we have three other children, so we planned a couple of visits for November and December.
There are moments which creep up on me, not quite daily, but often, when I have to pause and deal with the disconnect of Jack living far away and in other people’s care. I used to get an icy splash through my veins whenever this happened. My inner engine was working overtime in these situations.
Now, it’s more of a mental conversation I have with myself. It looks like this:
Me: I hate that Jack doesn’t live with his family. Are we doing enough for him? Even when we drive three hours to see him, he can only tolerate seeing us for around thirty minutes. And he can’t talk to me. Life is so strange and unexpected and frequently uncomfortable. Ugh.
Also me: Jack is living where God told us he needed to live. We are overseeing his care and praying for him and his caregivers every single day. Jack doesn’t want to hang out with us for long periods of time. He wants the Happy Meal, Reece’s cups, and toys we bring him. He is at peace with his life’s mission. You know this. Jack isn’t afraid. Stop worrying.
Will this inner dialogue ever cease? *insert shrug emoji*
Me at Hair Salon: A Tableau
At my hair appointment today, I thought about the fact that I am in a (knock on wood) calm stretch of ye olde parenting journey. I mean, yes I have to still physically drag Truman into first grade every damn day and we have to engage in ridiculous negotiations to get him to try any foods other than dino nuggets.
But comparatively, this is nothing.
My home isn’t full of behavior therapists or respite sitters every day. I’m not battling one school district or another for Jack’s right to an education. We aren’t living at Primary Children’s Hospital (just popping in occasionally). Our house doesn’t look like an orphanage anymore.
I stared out the window as I waited for my appointment and all I could think about was this: There is such luxury in spending time on things other than one’s survival.
I recently bought myself a handbag for my laptop. I hang out more with my mom. My house isn’t facing daily destruction. I can spend a day helping a neighbor. I’ve started cooking again. All of this is because I’m not drowning anymore.
Maybe this is how it works. We get periods of respite when we aren’t treading water, when we are in a rocking boat or, better yet, dry land. We will inevitably re-enter the water by some tide or sea creature dragging us in to once again swim for our lives.
But when we can, we rest. And we can help those who are still in the water.