Monday Musings – I Miss Writing

I miss writing.

Over the years, a handful of worthwhile endeavors have quietly stolen time away from my true passion; endeavors like creating a nonprofit and renovating a farm for my disabled son or necessary obligations like marketing and social media, or fun “let’s stretch Jess a bit” type of activities such as hosting a podcast, speaking engagements, or creating a documentary. Good endeavors, life-giving endeavors, but not THE endeavor that makes my heart sing. Not writing.

I resigned from teaching for the same reason. Teaching was a stable, worthwhile endeavor but not my endeavor and teaching left little time for writing. Life is full of complicated choices that involve either this or that and the choice must be made because otherwise neither this nor that can be done very well.

All I ever wanted to be was an author. As a young girl, I poured over Hemingway, Faulkner, and Graham Greene while my friends competed in sports and played spin the bottle. I was always a bit of a complicated soul who resonated with the likes of Sylvia Plath or Emily Dickinson; tormented writers, although my life was far too normal and suburban to be all that tormented.

Instead of living vicariously through small squares on Instagram, I lived vicariously through characters. Books provided an education to my naïve homeschooled life; an education about the world and human behavior including intimacy, sex, and desire. Yes, mom, I read smut by the light of the moon.

I penned my first poem at age 9 entitled When God Created the World and wrote Missy May, my first work of fiction, around 11. I KNEW they were brilliant, but no one else seemed all that impressed. In fact, my younger brother, the one who would become an attorney, he received most of the accolades when it came to writing, or intelligence, for that matter.

I didn’t care. The misguided affections simply lent credence to my theory that I was a tormented writer whom no one understood.

In 1999 I excitedly enrolled in college eager to enter the world of higher education which I was sure would affirm my talent, and again, no one had much to say about what I wrote. My professors often stated something to the effect of “There is so much potential here; however, you need to slow down and develop the content.”

Slow down.

Develop the content.

The Devil, most certainly, is in the details.

I am very much a “good enough” person. Good enough has gotten me far enough in many situations, and good enough was good enough at that stage of my life. I enjoyed the free time that the Bs allotted. I enjoyed not having to work so hard for A’s, and then there came a day when I had to give a speech.

My first speech ever.

It was called “All of my Heroes have Died,” a story of courage and valor, a story that retold the Columbine tragedy which had occurred only a few months prior. I read detailed notes as I clutched the podium, and then as I read the last sentence, I exhaled to calm my racing heart. I lifted my head and nervously looked out onto the room and met the gaze of approximately 20 faces and saw that most of them were wiping away tears.

And then I understood. Storytelling just might be my sweet spot.

That’s where I did enjoy the details.

That same year I showed up at an ex-boyfriend’s house and flung a bunch of poems at him – poems sharing the agony of my broken heart, poems like a bird stuck in a cage and chewed up gum under my shoe, overly dramatic hormonal ridiculousness. There’s no other way to describe it, but I do experience a smidgin of glee when I let my imagination run wild and allow myself to become a New York Times best-selling author. I imagine that maybe he still has those poems, and I wonder what he’d do if he realized that I had become famous. Or as famous as an author can be.

Another time I shared my poetry with a skeezy older guy I met at the gym, and the next day he asked if I was ok. I said then, (as I say now) yes, I’m fine. The thing is, I’m observant. Most of what I write is not about me. Most…

After college, I married Jason, a man I met at that gym, and we built our dream house for our dream life which included a third-story attic (my dream) where I would pen the great American novel, or so I thought. I occasionally sauntered up the stairs to put pen to paper, but then the birth of babies and special needs and brain cancer took over, and my manuscript gathered dust. I did write late into the evenings as I shared personal stories on my blog while my husband labored to breathe in the next room over.

Jason died in 2010, and a year later I packed up that dream house that had been built for a dream life that was no longer viable. I stuffed a pile of notebooks with half-written stories into a crate and began a new dream with my husband Ryan and our 7 children. I resumed a graduate program that I had begun years earlier, and on the last day, I handed in my final assignment; a paper that had become intimately intertwined with my own grief. Day after day I listened as the discussion dissected the hardships that many of the characters had endured; eerily familiar hardships like mine. I whispered an opinion a time or two but slowly let my voice fade when it faltered and then resigned to simply listening. For the final assignment, I wrote The Whiteman Road, one of the most deeply personal essays I’ve ever written, and the feedback I received agreed, “this paper is easily among the best, if not the best, in the class.” This admission made my heart soar, and I realized I still had words to write.

Our crew eventually moved to rural TN where I lived many of my stories and where I was asked to write my first real book Sunlight Burning at Midnight! I almost DIED of joy – a publisher wanted my story! That book was released, and I was asked to write another on blended life which I did in the middle of a global pandemic and then a poem went viral and reached millions of people, and that’s when I understood that not everyone was going to appreciate what I had to say. In fact, my truth might trigger responses in somewhere they would wish me dead. That was a hard lesson to learn. But my skin toughened up, as most skins do with scars that eventually heal, and I was asked to write another book, a book on marriage, but a nonsugar-coated book, which was just my specialty. My philosophy is “tell the truth or don’t waste your breath.” Nobody’s life is changed by reading sugar-coated spam, and if I agreed to write a marriage book, it would expose our scars. Healed over scars but deeply forgiven wounds, nevertheless.

I wrote that book, Lovin’ with Grit & Grace, and now we wait.

Ryan and I expectedly await your reaction.

And as we wait, I return to my first joy, my passion, writing.

These shall be called my Monday Musings, and they will arrive in your inbox weekly. They will hopefully be spirit led but sometimes the ego gets in the way too – that’s how it is with these human suits of ours. Some musings might be brilliant and some might be “good enough” but I hope they inspire you to lean into life, love deeply, be present, face hard things, make changes when necessary, and pursue joy above all else.

Just keep livin.

Pre-order Lovin’ here.

A Holy Shift

I descended the stairs, immediately irritated by what was awaiting me with each scream originating from my 15-year-old son. Great, I muttered as the uninvited stench rose to greet my nose. Luke, my son with profound special needs, required yet another diaper change – a chore that was becoming increasingly able to grate my very last nerve over the past few weeks as his father recovered from shoulder surgery – a recovery period that did not allow for diaper changes.

I opened the door slightly and held my breath. The third of the day so far. My least favorite job in the whole world.

I did what was necessary – cleaned my big 15-year-old man child, and as I prepared to leave, he reached for my face, met my eyes and sang in his sweet jumbled way,

Oh God you are my God, and I will ever praise you.

Continue reading “A Holy Shift”

WHAT HAPPENS?

I spent an intense morning with Luke at the eye doctor. Honestly, we’ve been frequenting doctor’s offices most days. Yesterday was PT for Ryan my husband, today, eye doctor for Luke, tomorrow and Friday PT for Ryan, Saturday, family doctor for a new wheelchair for Luke…

This is life for special needs families.

I made this appointment months ago – before Ryan had committed to his new surgery date in Feb – before when the original date was Jan 6 but then Luke was still in PICU & so we rearranged our schedules.

Today – 8:30 a.m. Feb 25, 2020. 5 days post op for Luke’s father who usually joins me on these exhausting excursions because it’s hard. But Ryan couldn’t join today with his arm in a brace, and I bribed my oldest daughter Mya to help. Bribed her with the promise of Starbucks. She agreed because that’s the kind of person she is. A lover of people and a lover of hot chocolate.

At 15 years old, Luke hates almost everything out of his ordinary – “GO TO SCHOOL!” was heard loud and clear – repeatedly- during our time spent in the serene waiting room added with the ants in his pants which resulted in a loud “GO WALK!” to the cacophony of chaos as mothers quickly shielded their children from his outstretched, unstable movements which threatened to grab or lick or stumble headfirst into their small toddler’s bosom.

What happens?

I asked myself – my blood pressure rising and heart palpitations quickening with each high pitched scream as Mya and I stared at each other with helpless looks as we tried to wrangle our big man child back into his stroller.

What happens when he becomes too big, and I can no longer physically restrain him?

What happens when he can’t go out in public because he might cause harm to another person?

What happens when my mental stability is hinging on instability?

What happens when his iPad isn’t interesting to him anymore?

What happens if he needs a diaper change and there’s nowhere to change him?

We were able to calm his anxious soul today quite by accident. The nurse played classical music from a contraption with green blinking lights (price tag probably $5000) to get an idea of vision capacity. He loved it and relaxed. I asked if we could keep playing the song on repeat for the remainder of the visit. She agreed & patted his knee “it’s ok buddy, it’ll be ok.” She was looking at me.

It’s okay is what happens. Mercy happens. Compassion happens. Occasionally someone really sees us – that’s what happens. Hot chocolate and strong coffee happens.

Moment by moment as we “just keep livin”

That’s what happens.

Luke Update – Caring for Special Needs After ICU

Today marks two weeks since Luke came home after being in the hospital for nearly a month.

To Recap – 

Luke had a shunt placed at 3 days old, and it became infected when he was one.  He had surgery and proceeded to be problem free for 14 years.  A miracle, really, until this past December when he got off the bus one Friday afternoon and couldn’t walk.  Literally sat down in the middle of the road.  Ryan and I reasoned that the symptom was attributed with the discomfort of his new braces; however, that night he wouldn’t eat and the next morning he wouldn’t either.  Luke ALWAYS eats. We brought him to ER where it was discovered that his shunt was broken.  He underwent surgery a few days later, was discharged, and we came home after a week; thankful that everything in our chaotic life was somewhat in order again.

Luke appeared to rebound quickly: walking again, eating, and singing so instead of canceling my speaking engagements, I headed to Michigan the following week and shared my story and encouraged communities to help special needs families.

I arrived home, we enjoyed the holiday together, Christmas night we feasted on our traditional prime rib dinner, and Luke wouldn’t eat. The next morning, he couldn’t walk.  We returned to ER where it was discovered that his new shunt was infected.  This was an “OH GOD!” moment because the revelation entailed a much more intense surgery and recovery period to first remove the infected shunt, strong continuous sedation to ensure that Luke wouldn’t mess with anything, strong antibiotics to clear the infection out of his body, and then another surgery to place a new – hopefully infection free – shunt back in.

Three weeks of absolute exhaustion – head down, “get er done” kind of life. Mya and I managed the fort at home, I visited Luke during the days, Ryan worked when he could because we did have bills to pay, and then spent every night beside Luke.

When Luke was discharged two weeks ago, I spent the majority of the first week in bed with his baby monitor beside me.  I got up to make food for the kids, do a load of laundry, and check email, but I primarily binged on Netflix and good books like The Body Keeps the Score and Small Fry (links below).  The trauma had finally caught up with me.  Ryan continued to move, slowly, but never felt rested or quite right.  We still don’t – really.  We’re so damn tired.  We compare it to the aftermath when our first spouses passed away in 2010 as we napped almost daily for over a year – our bodies and minds completely spent.  Trauma affects people in the strangest ways:  all I want to do is sleep, my joints ache – hips, knees, legs – bound so tight from stress, so tightly I’ve been moving like I’m 80 not 42.  About a week ago, in an effort to reduce my Advil consumption, I discovered a natural combination of Gaba, willow bark (2 for natural pain relief), Tumeric (4-6 for inflammation) and magnesium calm (2 at night for sleep) that has been a very effective nighttime cocktail, and I dance a lot with the kids – shaking off the stress like a wild animal after being pursued as prey. I haven’t been able to convince Ryan to join our dance parties – not yet, at least 😊 I’ve tried to take really good care of myself and go slowly – difficult for a type A, Enneagram 1 who thrives on changing the world, but right now, my focus has been on changing me so that I can function for my world – my husband and kids.

Luke is getting there.  He had a week remaining of detox meds when we arrived home so he’s been drug free for a week now; however, we still notice occasional tremors. He’s resting most days in his bed with music or his Ipad, he’s eating really well – back to normal – and his walking is improving daily but could take a while to be back to baseline.  Today he walked unassisted to his chair – which is huge! During surgery the doctor had to remove the infected tube that ran from his head down to the base of his abdomen – a tube which had been there for 14 years – so yes, his core strength has been greatly compromised. The doctor informed us that we’ll be much more in the clear (infection wise) at the 6 week marker.  Honestly, I don’t think I’ll even begin to exhale until we reach 6 weeks.  Hope feels very fickle right now, and I’m not trusting it at all. I know I have to let some of these walls of protection fall, but it is hard. We’ve done everything we can possibly do as Luke’s parents – hydrogen peroxide on his wounds, feeding him healthy foods full of hidden nutrition, Vit D drops, Vit C, Gaba to keep him calm, magnesium to help him sleep, washing his blankie and bed constantly, we’ve done it all but at the end of the day, this is a child with profound special needs who can’t be reasoned with, and if he’s interested in playing with his wounds with his grimy fingers (he also puts his fingers in his mouth all the time) he’s going to do it.  Every meal, as he sits in his feeding chair, I look at the scar on his head and envision tiny little angels scrubbing away all the germs with tiny little sponges, and I pray, protect my boy from infection and protect our family from any more trauma and then I say –

“But you are God, and I am not.  Thy will be done.”

Thank you for checking in on us. Links for any of the products I mentioned are below.

(Jess Ronne is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.)

http://

http://http://http://http://http://http://http://http://http://http://

http://

 

 

Just keep livin.