It’s Time To Go Home.

I’m a big believer in the number 7. Back in December 2019, when Luke was in ICU for a month I wrote –

“This morning, the 27th day of December, marks the 7th time I’ve sat in a room surrounded by soothing pastel paintings as I wait for news while a surgeon slices through a loved one’s head. In a few days we’ll flip our calendars to 2020 and that’ll mark seven years of our family living in Tennessee. Seven and Surrender. A word and a number now claim my thoughts.”

And each of these concepts – Seven and Surrender – have been continuous reverberations since that day in late December. I knew when we flipped the calendar to 2020 that something was about to change and possibly come to fruition although I wasn’t entirely sure what it was going to look like at the time.

In Biblical history, the number 7 is drenched in meaning and represented completion, rest, and victory. The completion of creation which culminated in rest on the 7th day, every 7th year was set aside for God’s chosen people as a year of rest and jubilee, and Joshua’s march around Jericho which resulted in victory on the 7th day.

On that gut wrenching day in late December when I sent my son off for brain surgery yet again, I chose to surrender to a will higher than my own and 2020 did unravel – for sure! – into a complete ridiculous reality in many ways: Ryan’s surgery, my broken foot, quarantined with 8 children, loss of income and lots of despair and questions, but it also brought blessings: a book deal, a podcast, a documentary project, healing for Ryan and Luke, the sale of two houses; a breakthrough with Luke’s communication, and clarity over what is important for us in life, particularly the importance of being immersed within the community of friends and family. Last summer, our 7th year in Tennessee, that clarity resulted in a decision to purchase land and build a house in Michigan. Yes, we are moving back to my home town.

Our hearts have been slowly accepting this move for over a year and included whispers of “Should we? Could we?” And after Luke’s (and then Ryan’s) surgeries, we knew that “Yes, we had to.” We had to move back home for resources and support. We could no longer do this immensely chaotic and exhausting life on our own, and if we attempted to, it might destroy us. We needed help. We need options when something goes off kilter, we need people to surround us when the unexpected occurs, and this became crystal clear after months of rehabilitation for Luke and Ryan.

We purchased land in July, the 7th month of 2020, and we are going home to build a beautiful accessible ranch for our family with a big sensory room for Luke and the kids; a home with a bike path straight to the Lake – Lake Michigan! – right outside our front door; a bike path that will bring immense enjoyment with Luke’s new accessible bike trailer; a path that leads to a playground less than a mile away. It’s time to stop putting our faith in the government for resources and time to put our faith in those who know and love us well. It’s time to rejoin the feast of community.

Yes, this decision was made largely with Luke in mind as Tennessee (and the South overall) lacks in resources as children like him age, and Michigan offers more possibilities including year round school until he’s 26 years old. That’s huge! Summers without any structure or anyone who will help with him have becoming overwhelmingly exhausting. We’ve also had the opportunity to tour a residential facility we would be very open to considering in the future; a beautiful place brimming with loving, Godly people who serve the least of these with their whole hearts. We are preparing for a future where our children have families of their own, and we want to have a plan in place to provide the time and energy needed for all our kid’s lives. This has been a heart wrenching decision, but we feel an immense peace that it is time. Our years in Tennessee were needed to bring our newly blended family together, a beautiful time away from distractions that melded us together which you will get to read about in my book Blended with Grit and Grace releasing this June, but now it’s time to say goodbye. It’s time to go home.

And as always, we continue to surrender – not really knowing what the future has in store but having faith that He will provide. When the cloud moves, we move. Moment by moment and step by step – walking in obedience into what he has next for the Ronne family in this 43rd year of life (4+3 = 7) and Luke’s 16th year (1+6=7). I surrender, and I believe that the next 7 years are going to be a time of rest and victory.

And, of course, I’ll document our progress which has already had its share of joys and trials as will life until the day I die, I suppose. Ryan and I usually travel to Mexico in January or February, and this year we went to Michigan where we spent the week clearing our property. Mexico, Michigan, pretty similar, right? The tentative plan includes a move this summer and living in a rental property while our house is being built. Crazy? A little, but a good crazy. It feels right. And it’s going to be quite the journey.

Stay tuned.

Just keep livin.

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.

A Glimpse – I Choose Hard.

“You and Ryan seem so calm”

A phrase I often heard when Luke was in PICU for almost 4 weeks this past December and into January.  We probably appeared calm because we’ve experienced the worst case scenario. Someone died on our watch in 2010. We’ve waded through the depths of hell and survived; not only survived, but found immense joy on the other side of our grief but that’s not the only reason.

What most people can’t understand is how difficult normal Luke is at 15 years old. Baseline Luke is hard. The restlessness, constant high-pitched screams, puberty, incontinence, the inability to verbalize what he wants or even understand what he desires makes it exhausting to raise this unique individual, but we do it. We go through the motions and thank God for giving us a child who has taught us numerous lessons through his fragile life. But it’s still hard.

As Luke lay quietly sedated in PICU, I was given a glimpse, A glimpse much like Nicholas Cage experienced in the beloved movie, Family Man. A 25 day glimpse of a different life.  Not a life in ICU with beeping machines and lifesaving equipment; instead, a life at home; away from the beeping machines; a life I returned to after Ryan relieved me at the hospital; a life with the other kids. A life where I awoke to the rising of the sun and not to my 15 year old screaming over the baby monitor. A life where I had the freedom to run to the grocery store for milk and not worry about who would stay with Luke; a life where I didn’t have to constantly decipher what my non-verbal child wanted, and a life void of diapers and wheel chairs and walls smeared with food from wherever he ate his last meal.

An easier life. A life of peace or more peace than I was used to. A life of occasional silence. A life without Luke.

Struggle has a way of forcing beauty to the surface. The pink cactus, planted in a dry parched land – sinking its roots deeply into the brittle soil; willing its way to the surface – beyond the menacing thorns the bright pink petals unfold in majestic glory as the soul reaches for the sun.

The hard, holy treasures of life. Dull glittering nuggets that contain what really matters – unearthed through trauma and agonizing moans and breaths that can’t be released and heartache that brings a mama to her knees as she begs God to intervene and heal her son.

I wrestled with the Almighty for days as Luke lay in ICU. Weeping, moaning, begging – my thoughts scary, laced with guilt There’s peace, it’s quiet; my heart isn’t racing, I slept all night…

In the garden, beside the cords and tubes and beeping machines, sweat dripping from my brow, pleading –

Father, grant me the strength to endure the hard, screaming, physically, emotionally, and spiritually draining cup you have asked of me to drink.  Please spare my son. I choose him. I choose the difficult path you have called of me.  I choose life. Give me grace and strength to walk the road. Crucify every desire for prideful control. May I serve the least of these in your kingdom, and may I serve them joyfully.  Yet not my will, but yours be done. Luke 22

This is my road, my journey, and this is the way I must walk. I choose the narrow, parched path where only the pink petals bloom; the path lined with thorns and littered with dull and dirty nuggets – nuggets masking a priceless treasure beneath the smut and the grim and the walls smeared with food. I choose hard and holy.  I choose Luke again and again and again.

Just keep livin.