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.)

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Just keep livin.

 

 

 

I Stopped Drinking

I gave up wine for 30 days.

Yep, even the first two weeks of summer break.

Today is the 31st day.

Most who know me or even know me from online know that one of my favorite ways to unwind is on the patio with Ryan, enjoying a cold glass of chardonnay and an assortment of cheese and crackers. This little treat is like my participation ribbon at the end of a day – not first, second, or third place – just simply, yes! You showed up and accomplished another day with 8 kids! Here’s your prize! Enjoy.

The decision to stop this pleasant tradition was partly evoked by a trip to the library where I saw Annie Grace’s book The Alcohol Experiment.  I thought, Could I do this? I had considered removing one food group a month to (hopefully) pinpoint the origin of my eczema flareups and figured May might be a good month to start – with alcohol – specifically wine and the occasional beer. This isn’t the first time I’ve completed a similar feat, but in the past the decision often ensues after the holidays or vacation when my body needs a detox from overindulging. I love a good challenge, and I tucked the concept away in the back of my mind.

After we moved, I was in a great place emotionally.  I was walking every day, doing yoga, engaging with Ryan as we enjoyed weekly date nights exploring restaurants, and having lots of family fun with the new opportunity’s city life offered. At the end of most days, a glass of crisp, buttery chardonnay or a cool wine spritzer became an anticipated treat and then… then I broke my foot and Luke started screaming non stop and some other really difficult situations occurred that I haven’t healed from and so I won’t write about them yet, and the glass of wine I enjoyed became glasses of wine and the social media scrolling (which I also restructured as I detailed in last week’s post) that was typically limited to school time hours was seeping into family time hours, and I felt like none of it was serving me very well anymore.

My anxiety was mounting.  I was not dealing with the uncomfortable feelings and instead wine and scrolling because a mindless way to make motherhood a little bit easier and allowed me to disengage. The typical glass followed by a walk, became glasses as I sat on my rear end unable to move and instead of catching up on the day, I replayed and relived the recent trauma by obsessing and sent myself further into a hole of misery with every sip I took.  Not a productive cycle. It was time for a reset.  I had to reprogram my habits surrounding what wine had become during the past few weeks, and as research shows, it usually takes approximately 30 days to form new habits. I immediately secured The Alcohol Experiment which became the perfect tool to accompany me on my alcohol free journey.

Thirty-one days in, I enjoy the new me that has emerged from the ashes. I’m stronger, more confident, and much less skittish because I’ve retrained my brain to deal with anxiety rather than ignore it.

The past month felt a bit like a pregnancy; a familiar analogy. The anticipation of an improved life as I gave birth to a new me. I figured out what my triggers were and how to feed my system with new thought patterns, tools and skills. I tried to center most decisions around being the healthiest version of myself so that I could bring life to others. I’m still pregnant in a sense because it’s an ongoing process of renewal as I unearth some deep-rooted junk and learn ways to muddle through.  Because that’s what it is, right? When shit lands in our lap, we muddle through, inch by inch with either healthy tools like working out, gardening, reading, or crocheting or unhealthy tools like gossip, beer, filling our bodies with preservatives, or shopping.  It can all get out of hand pretty quickly if we don’t clear our heads, reevaluate, pray for grace, and retrain our brains.

The only time I really craved a glass of wine was during my monthly cycle (sorry guys).  Something about the estrogen fluctuations, sugar cravings and hormones must have previously been satisfied with wine because in place of it, I made (and enjoyed) a cake with 6 cups of sugar along with strawberry shortcakes, blueberry crisp and homemade ice cream.  Other than those couple of days, it wasn’t a craving at all, and I accomplished a ton! Such as –

  1. I lost weight
  2. I painted my kitchen
  3. I found joy in former activities such as crocheting, reading, crafting, and writing in a journal.
  4. I updated my proposal
  5. I conducted meetings about starting a new Lucas Project chapter
  6. I read ten books!
  7. I found a therapist
  8. I crocheted a blanket for Annabelle’s birthday
  9. I set aside an hour every day for quiet time (reading, writing, prayer)
  10. My head is clear. I wake up and I’m ready to face situations that previously would have sent me into a spiral of despair as I’m now able to step outside of myself (or Betty – stay tuned, a post on her soon) and view situations objectively and rationally.

The cons included my hormones, the eczema flareups did NOT decrease, and I really didn’t like not having a choice.  I know that sounds strange because it was a self- induced experiment, but when I commit to something, I am in 100%, and in my mind there is NO choice.

Where do I go from here? Day by day, choice by choice. The idea of having a glass of wine has truly become a take it or leave it thought. I am now empowered with so much more mindfulness after reading the book and dealing with my feelings. Therapy has also helped. The anxiety is almost completely gone, and I feel courageous for completing the commitment. As with any decision moving forward, if I feel like it needs to be addressed again, I will stop and reevaluate. I incorporate this philosophy into numerous aspects of life including: food choices, social media, exercise (that usually needs to be added), wine, engagement with my children, and the list could go on and on.

This essay is simply my honest experience and is in no way a prescription or guide for someone addicted to alcohol.  If this describes your experience, please seek professional help. Maybe you see yourself in some of my words, and it’s time for a reset in your life. I can attest that it really does work! Maybe it’s not even wine or social media but something else.  We all have a thing or two we turn to in times of difficulty, and it’s learning to manage these decisions and not let them manage us.

I’m certain I’ll enjoy a glass of wine from time to time; a birthday celebration, vacation, or a night spent with girlfriends, but I’ll be mindful – God willing, and it’s all by his grace, isn’t it?  Grace to take it moment by moment – decision by decision – in his power and leading.

Next up, no gluten for June.  Hopefully I see some improvements with the eczema.

 

Just Keep Livin!