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.

 

 

 

To the Medical Mama – I See You.

How many times have Ryan and I watched from a distance – mostly online – as a special needs family spent weeks or even months in the hospital with their child, and we said to each other – gosh, that’s gotta be hard. We had a limited understanding of how difficult an ordeal like that could be because Luke has been extremely healthy for many years – healthy until now – our 25th day spent in the hospital.

Now we know how hard it is; we know on a personal level. We’re aware that it involves trying to determine how a non verbal child is feeling or reacting to a particular treatment. It includes stiff muscles from sedation & sleeping on hospital cots & sleep deprivation from vital checks & rounds. It involves depleting the savings account because of days missed at work & stress related problems & nutritional deficiencies because our meal options primarily consist of Taco Bell or Pizza Hut. It’s depression & ptsd & loneliness & marital disconnect & siblings who misbehave because they need attention too and a house that hasn’t been cleaned in a month & rotting fruit & veggies because of absentee parents & piles of laundry & bills & vehicles that require servicing because of extra miles driving back and forth and back and forth, and exhaustion on a level where in your quietest moments you wonder if you might die.

My passion in life is to bring awareness to the struggles special needs families face. It’s why I started The Lucas Project – to bring public awareness to the problem and then provide a solution.

I couldn’t personally speak into the medical mom struggle before this journey because it wasn’t my story, but it is now, and I will lend my voice – honestly and vulnerably to the conversation in order to bring awareness to the silent warriors tucked away – rocking themselves into a disrupted sleep, penning updates for the masses; those hiding behind cords & beeping machines & very sick children.

I see you.

I see you
I see you.
I see you.

Solidarity & peace & love my friends ❤️