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Two Tragic Tales

A 12 year old boy is diagnosed with cancer & the prognosis is not good. In fact, doctors say there is very little chance for survival. The whole community rallies because this family’s world has been turned upside down!

Churches, schools, & most of the community reach out to lend a hand. In place of fun events & extracurricular activities, this family now attends doctors appointments, chemo infusions & spends hours on the phone battling with insurance companies. They have very little time for anything outside of fighting for their son.

There are zero expectations on this family & they have meals delivered for months from concerned congregants willing to help. A few women from the knitting club show up to weed their flower beds. Another crew from a local church cleans their house & yet another, does their laundry. Judy picks up the siblings for a fun day of bowling & their mailbox overflows with money from people eager to make a financial difference since Dad had to take time off from work.

Everyone understands that this family is hanging on by a thread & that they need all the help they can get while their child goes through this difficult time which in turn, means the family goes through a difficult time.

Their son fights valiantly for 3 years & dies.

And then, there is another family down the road who received a terminal diagnosis for their daughter when she was born 12 weeks premature. Doctors predict the same – very little hope, but this child lives & because she requires numerous supports, this family also spends most of their time at doctors, specialists, & on the phone fighting for services. This child needs so much support that mom eventually quits her job to care for her full time.

The church was helpful for the first week or two of this child’s life; a few meals delivered, an offering taken & prayers said, but then they became tired or disinterested as the child continued to live, & they backed off or forget to check in as she grew. The community was also invested, initially, but as time wore on, they returned to their lives, oblivious to the hardships & sleepless nights that occurred behind the white picket fence down the road.

This child grew & grew & grew & she reached 22 years old. Her lifeless body grew excessively large as many bodies do on medications. Her mother’s health plummeted as she hadn’t slept in years – up all hours of the night as she sits in vigil over her daughter’s labored breath. Her father’s beard is peppered in gray & his back, hunched low in pain, he grimaces as he gently lifts his girl to bed after a bath.

Her parents have sacrificed their entire lives for her care & she remains very fragile due to her condition & her life expectancy remains low. The school continues to call & ask if mom wants to bake some brownies for the upcoming craft show & the church texts dad &
asks him to serve as a deacon – no never mind that this family hasn’t come up for air in 22 years. No never mind that they have been silently deteriorating for 22 years without any help.

She continues to fight valiantly.

No never mind…

Two tragic tales.

The first family received an outpouring of support when their child was diagnosed with cancer, but the family who has fought a terminal diagnosis with their daughter for 22 years received very little acknowledgement on their difficult path.

I’ve lived these tales – same story, different characters. A young husband who battled cancer for 3 years & a son given a terminal diagnosis at 20 weeks in utero.

Same story.
Similar results.

But why?

Why church?
Why schools?
Why society?
Why world do we acknowledge the one & not the other?

It’s time to bring lifelong parent caregivers into the spotlight.

It’s time to emerge from our dark deteriorating tombs.

It’s time for us to be SEEN.

Just keep livin

Metamorphosis

 

 

 

 

 

 

 

My boy is changing
Before my eyes
What once I felt
As smooth soft skin
And tender limbs
Has transformed
To rough patches
And wiry black sprouts
And the songs have been replaced
With aggression
And anger
As his behaviors flare with indecision.

The Wiggles have left the stage
Their brightly colored spectrum dissolved
And “yummy, yummy” is no more
Metallica takes the place
Of innocence
And pulsating passion ensues
And explodes upon the environment
As joints ache
And bodies moan
Beneath the weight of the exchange
And the curtain rises
To display the headliner.

And yes, it is supposed to be like this
But no, it’s not supposed be like this.
My boy thought dead before his first breath
Now erupting with exhalation.

The constant
Conundrum
of
Change.

Some –
Should not have a front row seat
To the metamorphosis
That occurs
But sometimes
Some –
Don’t get to choose.

My boy,
My beloved child
Has challenges
Beyond his control
Or mine
And he’s incognizant
of the fact
That I am
Indelibly,
A high roller
Money baller
Ticket holder
To the show
That first began
Within my womb.

Every change
Viewed up close
Center stage
While the soloist rages
Against the backdrop
of a mural
Splashed with red & yellow, black & white
They are precious in his sight
Left by those who came before
A symbol of life & love & pain.

And I whisper to the usher
“Any availability elsewhere?”
I consider sneaking away
To the nose bleed section
Where the big screen replaces
Intimate reality
And where I would no longer be privy
To the drops of sweat
Or peach fuzz
Or manic defiance.

I would move
If I could.
But I can’t.
So I continue to cheer his advances
And his wins
And his changing appearance
And his powerful masculinity.

I accept his body banging
And celebrate his flapping fingers
Swaying to the chaos
Of a private concert
For one.

I will embrace
The raging thirst
For growth
And transformation
For change equals
Life
And breath
For me
And for him.

And yes, it is supposed to be like this
And no, it’s not supposed to be like this.

 

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

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Sunlight Burning at Midnight

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