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.

The Side Effects of Being a Caregiver – Insomnia.

Here’s the second post in a series about the numerous side effects of being a caregiver. I gave a short list of many of the side effects I’ve experienced in my journey in last week’s post where I highlighted a recent struggle with hair loss, and the ways I’ve combated this ridiculousness.

The next most common side effect I’ve experienced related to being a caregiver has been insomnia. Part of this is absolutely related to caring for 8 children, and part of it, I’m sure, has to do with this lovely stage of life I’m currently in called peri-menopause.

Now given, I am the most OCD sleeper on the planet, and I hate this facet of my personality. I am way too in my head and really struggle to sleep outside of my normal environment or routine.  I am extremely envious of people who can sleep anywhere and everywhere but this is not my reality.

A few things that I must do before going to bed.

First, good nights and hugs for the kids, read Annabelle a story, and give Luke his meds. Draw the room darkening shades and curtains. I require pitch black  in order to sleep. Then I do 15-20 minutes of restorative yoga, take a warm bath with Epsom salts (I like these)

and take one willow bark – a natural Advil alternative

 

 

 

and one  L-theanine which is good for relaxation and gut health.

 

 

After my bath, I take two of these magnesium supplements which I have found to be hands down the most helpful in my journey towards natural sleep preparation. In fact, I ran out of this particular brand for about two weeks, and I used another brand which I had on hand, and I kid you not, I did not sleep very well.  This brand is AMAZING.

 

I really, really try to avoid Advil or Benedryl because I know they’re not great for me or my liver.

And, at 9:30, it’s time for  yogi tea mixed with Reishi mushroom – both which have a calming effect on my racing mind and take approximately 30 minutes to kick in and then it’s lights out at 10:00 p.m.!

I’d say the tea and mushroom put me to sleep quickly and the triple calm magnesium keeps me asleep (for the most part) and last but not least, I rub tiger balm on my hips which have been aching since giving birth to my baby 5 years ago!  Get some here. 

 

 

That’s it. My extremely OCD sleep routine which is admittedly ridiculous, but I can’t function without sleep – especially as a caregiver to 8 children. Yes, I’ve tried Valerian and Melatonin. Both give me weird dreams. Maybe this routine will help someone else in need of a solid night of sleep.

Just keep livin!

 

 

(This post does contain affiliate links which I may receive compensation for).

When He Outgrew Cute

When he outgrew cute
The looks changed from compassion to concerned
Towards him
And towards those who supported him.
And sometimes disgust
Overshadowed concern
As he stubbornly clung to his ways.

When he outgrew cute
The calls increased
Calls desperate for help
Desperate for summer options for a fifteen year old in diapers
Desperate for respite
Desperate for adaptive equipment
Desperate for anything that would assist a non verbal man child
Or anyone
And the voices were silent
Or they whispered –
Sorry.
Sorry.
Sorry.

When he outgrew cute
His movements were no longer celebrated
But instead feared
Violent head banging
Aggressive pulling
Dangerous optimism
With the strength of a man
And not that of a child.

When he outgrew cute
The damage began
Damage to walls
Damage to others
And damage to himself
And this damage
Wreaked havoc on more than just objects in his path.
It wreaked havoc on psyches as well.

When he outgrew cute
The walls caved in
And the house became a tomb
And the isolation suffocated those within
As they desperately yearned to belong
To something
Somewhere.

When he outgrew cute
Milestones were no longer encouraged
And his future grew dim
And symptoms of PTSD set in
For those who loved him and had been
Rattled by his screams for years.

When he outgrew cute
Mood altering drugs were doled out like candy
One option after another
For him
And also –
Suggested for his caregivers.
Drugs to dull the pain
Drugs to pacify
Drugs to silence the demons

When he outgrew cute
She outgrew herself
As every ounce of strength was poured into him
And she got lost in the daily grind
Lost in the sleepless nights
And invisible behind the never ending tasks

When he outgrew cute
She outgrew silence
And she raised her voice
To join the cacophony for change
And her battle cry rose –
A better tomorrow!
For him
And for those who loved him.
Because when he outgrew cute
He outgrew society
And that’s simply not an option.
For anyone.
Anymore.

When he outgrew cute
She found the strength to move forward
To move towards advocacy
And move towards hope.
She found the strength
To keep going
And keep growing
And she found the strength
To just keep livin

I Know.

As a caregiver to a child with intense and profound special needs, I know that my voice is relevant in this space because of my experiences.

I know that I sigh deeply when people who have no experience with autism offer suggestions on behavior modification.

I know that I want to throttle well meaning folks when they say to “hire help” when there is very little help to be hired or the available help comes at a hefty price tag that a family of ten can not easily afford.

I know that I want to scream when people suggest that we “take him with us – he’ll be fine” knowing he won’t be fine and will instead holler “ALL DONE!” until we agree to leave.

I know that it broke my heart as we tried different medications to thwart the aggressive behavior that resulted after the abrupt ending to Luke’s school year.

I know that it drives me bonkers when my experience with Luke is compared to raising a toddler. No, it’s not the same. A two year old kicking and screaming – kind of cute. A fifteen year old violently thrashing and screaming, not so cute.

I know that my heart often races as passive guilt is heaped upon my already heavy shoulders when we decline an invitation because of finances or weariness or just plain lack of giddy up.

I know that the gossip whispered about time spent away from my children – frequent getaways in order to be a somewhat sane mother who is able to do this exhausting endeavor day after day, hurts.

I know that I could weep every time I think about Luke’s future, my future, – fearful of what opportunities or resources await or don’t await us after 18.

I know what it’s like to be a caregiver of a teenage son with profound and complex and difficult needs. I know that my voice matters. My vulnerability matters. My experience matters as I speak into this space.

I hope and pray that my voice will be a part of many voices that will create change that is desperately needed in America.

However –

I do not know what it’s like to be black and so I will quiet my voice, quiet my judgmental thoughts, quiet my preconceived ideas and opinions, and I will listen. I will listen to the voices of wisdom who can teach me. I will listen to their experiences and their stories, and I will learn.

This I know.

To learn more about how you can help caregivers please visit www.thelucasproject.org