It Shouldn’t Have to Reach a Point of Desperation.

It shouldn’t have to reach a point of desperation.

That’s how my state generally determines when an individual will get bumped to the top of the list for assisted living.

Not an ideal scenario.

I recently heard that an available spot was immediately filled by a young man whose mother was diagnosed with cancer, and the father was unable to care for him.

Why does it take the diagnosis of cancer, death, or reaching the age where you physically can no longer care for your child before long term options are offered?

When we allow it to reach this point of desperation, the disabled individual not only has to process the traumatic events surrounding their frantic placement, but they also have to acclimate to a new environment, new surroundings, new people, and new schedules in the middle of an already traumatic occurrence.

Wouldn’t it be much more beneficial for the family to have these options before they are operating from a place of desperation?

Wouldn’t it be better for the disabled individual to be able to process the new surroundings with the loving encouragement from his or her family who visit & help make the transition as smooth as possible?

But this can’t occur if we ask families to operate from a place of desperation.

This can’t occur if the family is preoccupied as they address a life or death situation.

This doesn’t occur, and it’s a crying shame.

Families need options before the point of desperation.

Families need support.

Families need to know that there’s hope.

Just Keep Livin.

The Reluctant Caregiver.

I consider myself a “reluctant caregiver.”

Let me explain.

If I were God & I was looking for someone to be “the voice for caregivers” as I’ve weirdly become, I would not pick Jess Ronne.

I’m not that woman who loves everybody’s children.

I’m not that woman who oooo’s over every newborn baby.

I’m not even that woman who’s all that fond of my own offspring at times!

I’m not the mom who runs to bandage up boo boos (that’s the dad in our house) or hurries to urgent care with every fall.

I don’t dole out meds unless absolutely necessary or cuddle with sick kids all day on the couch.

I’m more of a “here’s your movie & bucket. I’ll check on you, ok?” kind of mom.

I would be a horrible nurse.

I don’t volunteer for nursery or Sunday school.

Nor do I cry with sappy movies – except Benjamin Button – every.single.time.

And I don’t do words without deeds –

Like, “I’ll be praying for y’all” with no follow through.

Not my cup of tea.

I am the furthest thing from a Karen. I do not give two rips about how you raise your kids, but I sure do give a rip that you also mind your own business when it comes to how I raise mine 😉

I’m the buck up buttercup girl!

Dry your tears!

And just keep livin!

So odd, this caregiver space I find myself in.

But in his gracious wisdom, the Lord chose me to not only be a caregiver to my dying husband but also to 8 children & a son who will require care for the rest of his life.

A Moses situation, for sure.

Although, in my defense, I didn’t require a burning bush before I got to work.

Again, I’m not sure why he thought I’d be an ideal candidate for this role, maybe because I was willing? Perhaps because I obeyed & took baby steps forward in faith? Maybe because I’ve surrendered every step to his perfect & holy will?

I really don’t know, but here I am trying to be a voice in the wilderness, trying to obtain support for families & trying to make a tiny bit of a difference in the lives of special needs caregivers.

What I do know is that being a caregiver has been the most life changing experience of my life.

It has molded & shaped & broken me in a million ways.

It has literally burned away any pride that threatened to stand in the way.

It has taught me that words without deeds are meaningless.

It has taught me grace & compassion & mercy in spades.

I’m a doer, a fixer, a mover, & a shaker not a dweller, a moper, or a woe is me-er.

There’s a problem?

Let’s fix it, by golly!

Maybe that’s why the Almighty saw fit to tag me –

“Duck, duck, goose!”

And so I’ll continue to waddle my way through this strange terrain of caregiver advocacy. I’ll continue to raise my voice & use my platform. I’ll continue to buck when he calls me to speak, “Not me Lord! Choose my brother!” I’ll continue to drop to my knees & humbly ask, “What’s next?” & I’ll move forward in faithful obedience & lest the ego ever get the best of me, I’ll continue to rise, every day, & serve my son who will require this of me until the day I die.

Just keep livin

The Caregiver








The spider glides across the window pane
The beetle traverses the cold tile
The moth returns to the light
And the mama releases a sigh,
Weary after consoling her child

She exhales the attempts
To extinguish the flames
That rage within
The neurotic chaos soothed
By anti-psychotic meds
Or Barney’s songs
Or maybe there is no solution
On this particular day.

No solution for what
The blast stole from him
The stroke that occurred
Many, many years ago
And pained those
Who love him.

And the screams rattle the walls
And the windows
And the beetle cowers behind the urn
Which illuminates a translucent prism
Of relaxed bodies
that lean into the silky softness
or slowly cascade from the glow
and drift to lie
upon the patio.

She stretches her tired limbs
The mama who loved him from the start
Her terminal boy who defied every odd
And lived
But in living
Her dreams died a little bit
And she became frantic –
Fighting against the web
And against the light that beckoned
Desperate for an escape
Desperate to find a crack in the floor
Or maybe in the windowpane
Desperate to avoid the patio graveyard
And reject the silken suffocation
And she retreated
to the mat
upon the floor

The spider, the beetle, the moth –
Her friends in isolation
They wait
All three – they wait
And ponder
And shrug.

They consider their Job
Lying still and silent before them
Prostrate upon the cold tile
Seeking the light within
and not the one flickering
beyond the window pane.

The spider eyes her suspiciously
The beetle hurries past her motionless body
The moth flaps mightily
Her friends in quiet contemplation
Living a life not chosen
But yet, it was.
In childlike surrender
The light glimmers within
and beyond.

The spider, the beetle, the moth
They surround her
And peer intently into her dismal eyes
Her hallowed gaze
And they wait
All four, they wait
For escape.

An eerie silence fills the room
Except for the occasional screams
From the child
She sighs,

And then –

A sound –

She untangles her weary body
Her foot swipes the web
as she rises from the sunken mat
and scuttles to the door
flinging it wide
in welcome relief
The light rushes in
And becomes one with the day
has arrived!

Hallelujah and Amen!

The fresh air
Ebbs and flows
Like a steady tango
And brings hope
That brushes away
The spider, the beetle,
and the moth.

A burden lifted
Her soul is light and free
A meal, a drink, a gift
Life-giving sustenance
for the weary and famished.

She exhales
Slow and steady
Not caught
Nor trapped
By light nor silk nor walls
There is grace
Through giving hands
And sacrifice.

She is renewed.
She is seen.


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.