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

Why is it society’s problem when you have a disabled child?


This question was posed, & it made me pause.

I don’t expect support, funding or resources for my typical children so what makes my situation with Luke different?

It boils down to this –

“Society is only as healthy as its weakest link”

(Paraphrased from Maya Angelou, see quote in comments)

When we support families who have a child with intense needs we are eliminating the possibility of a few scenarios including:

The parents forfeiting their rights, & the child becomes a ward of the state which the state then pays for through foster care and/or adoption.

The caregiver’s life becomes overwhelming, & they lose hope which leads to negative ways to remedy the situation including harming themselves or their child (& then the state pays again through hospital &/or psychiatric care or worst case scenarios, funeral arrangements)

Caregivers living in unbearable situations with extreme behaviors like kicking, screaming, hitting, biting & breaking belongings which are ignored for far too long. By the time the government intervenes it’s no longer a few simple supports required but instead $500,000+ bill to pursue 24/7 residential care away from the family – often in a different state.

Numerous trips to the ER (often paid via Medicaid) with a child who exhibits extreme behaviors & sent home after a few days only for the caregivers to be left on their own with no resolution & back to square one.

Mom or dad can’t work a consistent job because there aren’t any respite opportunities, day programs, summer options, or after school care for their child & the government funds this family via unemployment, Medicaid, food stamps, etc, etc.

Doling out antidepressants (often paid by Medicaid) due to the stress of caring for a child with profound needs & zero support services.

Society WILL pay one way or another. Wouldn’t we rather have some simple supportive resources in place like respite, ABA, after school options, & day programs & support the concept of an intact, functioning, mentally healthy family unit rather than ignore the problems & pay astronomically later on & further weaken the link?

“Society is only as healthy as its weakest link”

Remember this when you look at families like mine and think “Why should society have to pay to raise your kid?”

As human beings we are at our best when we carry one another’s burdens; burdens like poverty, cancer, & families who need support.

The government provides funding for much more ridiculous things (that’s another post) so why shouldn’t it provide funding to strengthen society by supporting these families?

Just keep livin

It all goes by so fast.








It all goes by so fast…
The in utero diagnosis
The constant prayers
Your frail body being lifted from the abyss
Wailing for life
You & me
A cacophony of hope.
And brain surgery at 3 days old
And again, a year later
And in 2009
And most recently, 2 years ago.

It all goes by so fast…

5 years of sleepless nights
The studies,
The pokes,
The prods
The wins
And walking at 8!
And talking at 15!
And the lows
And screaming
And meds
And more brain surgeries
But not for you –
Biopsy confirms
A funeral planned
And a wedding too.

It all goes by so fast…

The moves
One, two, three
& again
& again
For resources
& services
& support
For you
And for us.

It all goes by so fast…

And here we are
6 months from your 18th birthday
When you become a legal adult
Except that’s not how it works for us.
I have papers that state otherwise
Papers that tell the truth
That you will need me forever
Papers that grant me control.
And I have mixed feelings
About this type of control.

“As long as you’re living, my baby you’ll be.”

A beautiful sentiment
For most
But for us…
It’s more literal
Isn’t it?

It all goes by so fast…

We’ll make plans for your future
Away from home
And what that might involve
And include
For everyone.
We pray
And yearn
And most of all
We hope for a beautiful, thriving community
For you
And for us

It all goes by so fast…

The days are long
And the years are short
And that’s partially true
My boy
My son who defied every odd
And lived
But in living
The years stretch on and on
Without an end
Because –
in the blink of an eye
I sobbed
Because –
You lived!
And now,
I sob again
Because –
I’m staring at this stack of papers
Papers that state the clinical truth
But not the whole truth
Not the ‘mom with her fingers crossed behind her back’ kind of truth
Not the heart truth.
Papers that simply state
Why I will forever be
Your person
Your cheerleader
Your caregiver.

It all goes by so fast…

The days are long
And the years are short
Unless you are like me
a forever caregiver
Then the days feel a bit longer
Than average
And the years do too.
But that’s ok
Because I’m your person,
My Luke
My forever boy
And you’re mine too.
It all goes by so fast.

Just keep livin ❤️

Written by Jess Ronne @jessplusthemess