Family Medical Motherhood

My Lonely

August 30, 2018
Jessica Rice Photography | jessicarice

It’s 5:00 PM, I open the duel panels to the refrigerator, glancing at one side and then the other. I crouch down to the lowest shelf and see what I’m looking for– a long pink wine bottle.

I reach for the neck, knocking over two containers of salad dressing as I slide the orange juice aside and wiggle the wine out through the double doors.

The Rose was for my next pool day with my sister- in- law, I make a mental note to replace the bottle at my next trip to the grocery store, only this time I’ll buy red. Summer is coming to an end.

The oven preheat alarm rings, reminding me to start dinner.

I open the wine and I look over the kitchen counter to my children nestled in the couch, their eyes on the TV as Fräulein Maria sings, “The hills are alive with the sound of music.”

Nora is resting with her neck tilted back and her eyes half open, her body still recovering from a week of medication changes, drowsiness and increased seizures.

It feels like we’ve done a lot of recovering lately.

Everett lays on his belly, head tilted in the direction of the TV, still in a post nap haze.

I pour myself a glass of swirling, glittering wine. It tastes like sweet, bubbly, charastmaic pink.

“God I’m going to drink this way too fast” I say to myself as I firmly set the glass aside and rest my elbows on the counter top, supporting my chin as I watch Maria glide through the Austrian hills.

As the opening credits roll across the screen, my mind drifts back over my long afternoon — to Nora’s clinic appointment at the hospital, and to the question Nora’s doctor asked, the question that followed me home:

“Do you feel alone?”

I replay the moment in my mind:

The appointment was coming to a close. The windowless room was getting to me and it was time to go. I was fidgeting, distracted by everything around me: Nora’s stroller, the task of packing her (already) packed bag, even cleaning the floor—messes that weren’t even ours. My anxious and antsy energy had steadily increased throughout the appointment, and my thoughts had gotten progressively more blurry except for one notion: running home, pushing a stroller in block heels.

I heard the doctor’s voice cut through the haze, “You can do this.” he said

My eyes narrowed, my shoulders expanded and set, and my face grew warm as I looked him in the eye and replied “I know I can.”

He looked at me and said calmly, “And, you are not alone in this.”

I couldn’t look at him anymore — but I remembered how badly I had wanted to hold his gaze and say clearly and steadily  “But yes, I am alone”.

Of course, that’s not something people say. Or at least they don’t say it out loud. And they definitely don’t say it out loud to doctors.

Again, I felt the next and most rational step was to run, pushing the stroller all the way home.  

Then I heard his voice again, “Do you feel alone in this?”

I still couldn’t look at him; I remember flashes of the white tile floor, Nora’s packed bag in the stroller, then staring down at my nude color block heels— the ones that make me feel like myself.

I rambled —  probably trying to make him feel better.  I remember saying the words “lonely” and “loneliness”,  and trying to string together a slew of explanations and rationales for the “whys” of my lonely, things about parenting and motherhood. Finally I stopped talking by saying the only thing that made sense;

“You just learn to make friends with loneliness.”

A choir of Austrian nuns is singing. I lower my forehead to the cool counter and breathe.

Inhale. Exhale.

Why do I say things like that out loud? I mumble to the floor, mortified.

The nuns from across the room cheerfully chime:

“How do you solve a problem like Maria?

How do catch a cloud and pin it down?”

I lift my head, to look at Nora, to see if she is responding to one of her favorite songs, but her eyes are still half open. Everett is sitting up now, smiling at the group of snarky nuns.

Insecurity continues to cloud my mind as another question surfaces:

Why did he feel like he needed to say these things? He never had before.

I open the refrigerator and collect bell peppers, red, green, yellow and begin the process of washing them, carefully removing the tiny label stickers and placing them neatly to the side of the sink.

My mind begins to formulate probable answers to the question:

A) I am coming across as needy in clinic appointments. I must be presenting like I am in need of reassurance. Or like I am in constant crisis. Is my anxiety that obvious?  But I wasn’t crying or emotional! Which must mean I sound incredibly overwhelmed. And now that I’ve officially announced that I’m friends with loneliness, I am being perceived as needy AND lonely. Perfect.

B) He understands the challenges parents of medically complex children face and probably ends many many appointments, phone calls and hospital bedside visits this way — even though he never had before, still, it’s super normal I assure myself.

C) He read and responded to “Wonder Woman”  in which I wrote to God and to the universe — to the building full of doctors in bow ties and nurses with big hearts:

“How do you all expect me to keep going? To live like this? Do you even get it? Do you have any idea what this is like?” and then eventually….. “I just need you to tell me I’m not alone in this.”  The doctors know I write about them.  Dear God. I’m in trouble.

I think about doctors reading the blog, then I imagine the residents consulting with one another outside Nora’s hospital room door during her next admission, “ Yes, the mom is a lonely writer. And apparently nobody is quite sure how she feels about bow ties in clinical settings.”

I reach way across the counter, and grab the wine glass, take a sip, push it back. It really does taste better by the pool I think to myself.

I begin to worry about the call I may get tomorrow – from the  palliative care scheduling team:

“Yes. Good afternoon, we’d like to schedule a medical social work visit, we heard you used the word “lonely” in clinic.”

I watch Fräulein Maria dance around the ledge of a large fountain of a wild horse, legs high in the air and head reared spouting water. She sings:

“I have confidence in confidence alone!”

Everett points to the TV yelling “HORSE!!!!”  Then, he looks to me with bright eyes and a smile. I laugh and match his enthusiasm, “look at that HORSE!!”  

I begin to slice the bell peppers, my own words echoing in my mind:“You just learn to become friends with loneliness.”

I know my mom and I will talk through the appointment later, Starbucks cups in hand.

I imagine her response when I tell  her about how I told Nora’s doctor that I’m friends with loneliness:

“You said what!?” She’ll say, half laughing, “Friends with loneliness? Jesse, what does that even mean?”

I think about how I will explain it to her.

Mom, there are a lot of things I can’t, and will never accept on this journey with Nora, but I think I can accept loneliness because loneliness is present and is a friend when nobody else can be.

Loneliness rushes with me to Nora’s room when I hear her scream in the middle of the night, as she anticipates her next seizure spasm, as I hold her hand tight and tell her calmly and over and over, “Momma’s right here” until her spasms slow and she slowly drifts back to sleep.

Loneliness is there as I turn my face upwards to the twinkle-lights strung throughout Nora’s princess canopy, loneliness who hears my (still) unanswered prayers for her healing.

And it’s loneliness who invites me into the reality that there is no solution to my hurt and that there is nothing to be done but breathe.

I imagine my mother’s response; she won’t be laughing anymore. She’ll be in full fix-it mode.  

“Jesse, I really think you need more nursing support, you’ve got to give yourself a break.”

I watch Nora lift her head from the couch for the first time this evening as Maria sings:

“When the dog bites

When the bee stings

When I’m feeling sad

I simply remember my favorite things

And then I don’t feel so bad.”

“Nora, you love this song don’t you?” I say to her across the room. She looks at me, and using all her strength she raises her eyebrows and then slightly tilts her head. This is her way of saying “yes” and inviting me to sing too, to dance, as we often do to The Sound of Music.

“Momma’s going to make dinner then we will sing all of our favorites” I tell her. Everett runs to the kitchen and attaches himself to my leg. I wrap a sheet pan in aluminum foil, carefully shaping the corners around each side as he rocks back and forth then tries to climb up my knees, suddenly desperate to see the top of the counter.

My phone vibrates  and suddenly I remember Becky’s email. Shoot!! I say under my breath, she wanted me to look over a blurb she’d written describing a piece for a upcoming dance program.

I distract Everett with brightly colored bell peppers, scan my email for the subject line “Dance Blurb,” and open it.

“The dance is is to “The Lonely” by Christina Perri –  one dancer is manipulating the other. Setting them down, lifting them up, moving them here and there. The other dancer has labeled this person as “Lonely”. At the end it is revealed that this person was God in her life all along supporting her.”

I read through her program blurb:

“When we lose someone or something, what is it that creeps in to replace it?  In our loss, in our sadness, and our desperation we can assume it’s loneliness. We can name it emptiness. We can fall into what we think is despair assuming it is sadness that is controlling our days. But, if we look harder, is it possible that God is creeping into those holes and filling them? Is He the one that is laying us down to be still, rather than loneliness throwing us to the ground? Is it possible that it isn’t despair that is keeping us from what we want but rather God asking us to wait for His timing? Look closer.  What is your lonely?”

My eyes jump back to the top, to her description of the dance:

“At the end it is revealed that this person, “Lonely” was God in her life all along supporting her.”

I picture this afternoon in clinic – the doctor’s words – you can do this and you are not alone.

Of course I can do this, I think, I’m doing it every day.

I unpeel Everett’s hand from the pepper slices, and tell Nora I’m almost done with dinner.  Then, before I swoop my son up into my arms and move around the counter to sing with my daughter, I think of my Lonely.

And, I know it’s ok. Even saying it out loud is ok. Especially saying it out loud is ok.

Photo Credit: Jessica Rice Photography 

Jessica Rice Photography | jessicarice
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