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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

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.