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
Again.

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
again.

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
below.
She sighs,
defeated,
Again.

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
Redemption
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
Extended
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.
Again.

#seemetoo

It Is Well With My Soul.

Over the past year I’ve witnessed the demise of many leaders; often pinnacles of faith who have fallen from grace, men and women who most assuredly began their careers with the noblest of intentions. Individuals who, through the passage of time, became enamored with self and blinded by fame & fortune; who lost perspective on their place within humanity because of a choice to turn from that still small voice.

I believe we each have the innate potential to fall far from grace; to perceive ourselves as better than we ought to. I know I do. Under different circumstances I could really embrace how special I think I am, hold on tightly to the perception that I’ve gotten this life thing figured out real good, lean into pride and her enticing offers & allow her to nibble away at my soul as she has with others who have climbed the ladder of success.

I think about all of this as I prepare to release a book and a documentary into the world.

Two creations that could potentially cast a pretty bright light on my life.

Perhaps.

I’m a first born, “me do it” Enneagram one who thrives on accomplishments and making a difference & these attributes are typically celebrated by society with lots of accolades and praise, & yes, this recognition is nice. I am human. It’s nice to be acknowledged for your achievements & even nicer still to have people perceive you as a good person; a person making positive strides in the steps of humanity; a respectful person with character. Of course it’s nice.

I’ve worked diligently & finished projects which might push me a little bit out of the shadows of anonymity & possibly into a world for which I am unprepared & yet –

I will continue to rise every morning
And diaper my 16 year old son
(which is as humility building as it gets some days)
And help him get dressed
And pour his juice into a sippy cup
And put socks upon his feet
And lace up his sneakers
And assist him to the car
And gently close the door but not until he says in his sweet sing song way –
“Bye! Have a good day!”
And I turn and walk away
With a smile on my face.
This is our routine
Me and my Luke
Every single day.

These monotonous actions serve as a reminder as they did with the apostle Paul – a prickly thorn that breathes humility into my swelling soul & deflates any pride that may try to sneak in; crushing it in an instant as my boy demands yet another round of –

“Paddy cake, paddy cake, bakers man, bake me a cake as fast as you can.”

And as his smile reaches for the stars, I lean into the understanding that he and I are created in the image of our Maker, one not better than the other, simply different with unique purposes & gifts, & the only attribute that makes us great is dutifully reacting in joyful obedience to the hard & holy tasks we’ve been called to accomplish.

Each staying faithful to the race we must run.

This uncomfortable road, this thorn of special needs & autism, this aching joy which serves as a gift – a gift that calls me to daily lay down my life & continuously keeps my head from ballooning & serves as a constant jab reminding me of who I am and who I am not by stripping away any pretenses. This gift which prepares a table before me in the presence of fame & fortune & pride; where Luke & I dine with the Shepherd feasting on humility & special needs & gulping down goblets of grace.

It is well with my soul.
It is well with Luke’s soul.
And that is enough.

Just keep livin

To My Son, I’m Sorry.

To my son with profound autism,

I’m sorry I didn’t try medication sooner.

I’m sorry that I was more concerned with side effects than possibilities.

I’m sorry you lived in an anxious mess of a mind for years because of my pride.

I’m sorry I assumed the worst and how it would affect you.

I’m sorry I hindered your abilities because of my inability to broaden my horizons.

I’m sorry I limited your communication when medication would have clarified your needs.

I’m sorry I restricted you from your siblings because the aggression, without meds, made you dangerous.

I’m sorry I sighed in resignation and helplessness over the thought of raising you forever when all you needed was a little help.

I’m sorry it took a global pandemic and a total shut down of the world as we knew it to set aside my pride & request something, anything, out of desperation.

I’m sorry for the years of progress I may have stolen from you because I was sure that medication would do more harm than good.

Son, I’m not suggesting that medication is always the answer or even your long term solution, but it has enabled your best life right here, right now & for that, I’m thankful.

From this day forward, I vow to be more open minded. I vow to continue learning & growing & expanding my ability to consider other possibilities & I vow to assume the best. I vow to never stop fighting for you.

I love you Lucas Aaron.

Mom ❤️

This was a difficult post to write & even more difficult to put out into the world, but I know there is a caregiver somewhere who needs to read these words. They need permission to look at options.

Don’t Tell Me.

 

 

 

 

 

 

 

Don’t tell me
It’s not severe
When it’s my story
To tell.

Don’t tell me
It’s not severe
When I daily live
A version of hell.

Don’t tell me
It’s not severe
When all you got
Is something to sell.

Don’t tell me
It’s not severe
When there are holes
Where he fell.

Don’t tell me
It’s not severe
When the curve dips low
On the Herrnstein bell.

Maybe the word is harsh?
Or profound or extreme?
Critical or grave?
Or perhaps just plain mean?

Do those options please you?
Allow sleep at night?
Like sweet nectar on the tongue
That burns with delight.

You can polish it up nice
Make it shine like brass
Ensure it’s real pretty
As translucent as glass.

Like the neighboring house
We all know the one
With the rocks quickly buried
Beneath the setting sun.

We each have our story
Some mild, some not
I speak for my truth
A belief that begot

A hope that spurs forth
Change and reform
Awareness and resources
For those out of the norm.

Ignorance is not bliss
Hear me loud; hear me clear
To pretend everything’s fine,
When autism CAN be severe.

#seemetoo
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