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Luke’s Uncertain Future.

Yesterday I enjoyed a lovely conversation with a mama of a 20 year old total care daughter. As we chatted, I was quickly reminded that my Luke will be turning 17 this summer & as of yet, we don’t have a long term plan. Sure, I have aspirations & dreams but nothing cemented in stone.
So instead of being a sane individual & prepping for a move, or writing a book I’m under contract for, or launching a current book (or non-profit work or being present for my 8 children), I spent the day obsessively researching how to become a Medicaid provider & start a residential facility.

Of course I did.

I looked at vacant land, at huge pole barn kits that could be sectioned off into living quarters, duplexes, cheap commercial properties that my handy husband could renovate, & then I began to crunch numbers which only resulted in disappointing results. It’s a HEFTY price tag to have your loved one cared for 24/7 (try $20,000+ a month for ONE caregiver).
My point is this. As many of you prepare to launch your high school graduates off; full of anticipation & hope over a world of possibilities (& I’m doing this as well with my two oldest), there are those of us freaking out about the future of our unique kiddos.

In fact, I believe most of my grief with Luke has nothing to do with his diagnosis but much more to do with the uncertainty of his future & ours. If someone would say to me, “ At 22 years old he will move into this amazing residential facility where he will be well loved & cared for.” That would work! But no one says this to parents like me. We don’t hold our breath for admittance to college at 18 years old. We don’t hold our breath for admittance to anything!

No, we hold our breath that there will be an opening somewhere that provides peace to our souls before our child turns 40 or before we die. Whatever comes first.
We live for years in fear over what the future holds for us & for our children & me being me, I’m sick of the fear & in true Jessica fashion decided to take the bull by the horns & try to control the situation (which may or may not work – we shall see).

It is what it is.

But please, remember us.

In the middle of the big hoopla’s & parties & ceremonies to celebrate the typical ones, remember those of us who aren’t in a major celebratory mood or have much whoop de do going on because there aren’t any options for our grown kiddos.

And you know what, then do something for families like ours. As we show up to celebrate your kids, advocate for our children. Vote for change. Donate to the organizations making a difference in your community. Our societies are only as healthy as our caregivers and that includes caregivers of the typical & caregivers of those like Luke.

Just keep livin.

It Is Well With My Soul.

Over the past year I’ve witnessed the demise of many leaders; often pinnacles of faith who have fallen from grace, men and women who most assuredly began their careers with the noblest of intentions. Individuals who, through the passage of time, became enamored with self and blinded by fame & fortune; who lost perspective on their place within humanity because of a choice to turn from that still small voice.

I believe we each have the innate potential to fall far from grace; to perceive ourselves as better than we ought to. I know I do. Under different circumstances I could really embrace how special I think I am, hold on tightly to the perception that I’ve gotten this life thing figured out real good, lean into pride and her enticing offers & allow her to nibble away at my soul as she has with others who have climbed the ladder of success.

I think about all of this as I prepare to release a book and a documentary into the world.

Two creations that could potentially cast a pretty bright light on my life.

Perhaps.

I’m a first born, “me do it” Enneagram one who thrives on accomplishments and making a difference & these attributes are typically celebrated by society with lots of accolades and praise, & yes, this recognition is nice. I am human. It’s nice to be acknowledged for your achievements & even nicer still to have people perceive you as a good person; a person making positive strides in the steps of humanity; a respectful person with character. Of course it’s nice.

I’ve worked diligently & finished projects which might push me a little bit out of the shadows of anonymity & possibly into a world for which I am unprepared & yet –

I will continue to rise every morning
And diaper my 16 year old son
(which is as humility building as it gets some days)
And help him get dressed
And pour his juice into a sippy cup
And put socks upon his feet
And lace up his sneakers
And assist him to the car
And gently close the door but not until he says in his sweet sing song way –
“Bye! Have a good day!”
And I turn and walk away
With a smile on my face.
This is our routine
Me and my Luke
Every single day.

These monotonous actions serve as a reminder as they did with the apostle Paul – a prickly thorn that breathes humility into my swelling soul & deflates any pride that may try to sneak in; crushing it in an instant as my boy demands yet another round of –

“Paddy cake, paddy cake, bakers man, bake me a cake as fast as you can.”

And as his smile reaches for the stars, I lean into the understanding that he and I are created in the image of our Maker, one not better than the other, simply different with unique purposes & gifts, & the only attribute that makes us great is dutifully reacting in joyful obedience to the hard & holy tasks we’ve been called to accomplish.

Each staying faithful to the race we must run.

This uncomfortable road, this thorn of special needs & autism, this aching joy which serves as a gift – a gift that calls me to daily lay down my life & continuously keeps my head from ballooning & serves as a constant jab reminding me of who I am and who I am not by stripping away any pretenses. This gift which prepares a table before me in the presence of fame & fortune & pride; where Luke & I dine with the Shepherd feasting on humility & special needs & gulping down goblets of grace.

It is well with my soul.
It is well with Luke’s soul.
And that is enough.

Just keep livin

To My Son, I’m Sorry.

To my son with profound autism,

I’m sorry I didn’t try medication sooner.

I’m sorry that I was more concerned with side effects than possibilities.

I’m sorry you lived in an anxious mess of a mind for years because of my pride.

I’m sorry I assumed the worst and how it would affect you.

I’m sorry I hindered your abilities because of my inability to broaden my horizons.

I’m sorry I limited your communication when medication would have clarified your needs.

I’m sorry I restricted you from your siblings because the aggression, without meds, made you dangerous.

I’m sorry I sighed in resignation and helplessness over the thought of raising you forever when all you needed was a little help.

I’m sorry it took a global pandemic and a total shut down of the world as we knew it to set aside my pride & request something, anything, out of desperation.

I’m sorry for the years of progress I may have stolen from you because I was sure that medication would do more harm than good.

Son, I’m not suggesting that medication is always the answer or even your long term solution, but it has enabled your best life right here, right now & for that, I’m thankful.

From this day forward, I vow to be more open minded. I vow to continue learning & growing & expanding my ability to consider other possibilities & I vow to assume the best. I vow to never stop fighting for you.

I love you Lucas Aaron.

Mom ❤️

This was a difficult post to write & even more difficult to put out into the world, but I know there is a caregiver somewhere who needs to read these words. They need permission to look at options.

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.

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Sunlight Burning at Midnight

Sunlight Burning at Midnight