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.

 

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
Aggression
And screaming
And meds
And more brain surgeries
But not for you –
Biopsy confirms
Terminal.
Cancer.
A funeral planned
And a wedding too.

It all goes by so fast…

The moves
One, two, three
Uprooted
Again
& 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
soon.
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
Someday.

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
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