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A Special Needs Mama

A special needs mama
Is weary in her soul
Day after day
Has taken its toll

Years of sleepless nights
Many thankless jobs
The constant demands
And heart wrenching sobs

The daily needs grind her
Almost to the bone
The exhaustion, the diapers,
all of the unknown

A son she prayed for
Who’s unruly and wild
A son she prayed for
Who’s misunderstood as a child

But wipe her tears she must
And get on with the day
For duty calls again
Duty – without pay.

The phone calls, the letters,
She’s desperate for a break
Why don’t they help?
She thinks, for goodness sake.

She’ll make them see
She’ll make them care
She’ll share her story
Cuz she’s a mama bear

A special needs mama possess a strength
To rise up and fight when others will shrink
A yell or a whisper, a plea or a shout
She’ll do whatever it takes to get past all the doubt

At first, barely a word
And then gaining in power
She’ll tell of her trials
Without nary a cower

She’ll advocate, scream,
pound her fist if she must
She’ll stare down the judge
leaving him in the dust.

Cuz that’s how change happens
With boldness and brawn
That’s how change happens
To usher in a new dawn

So raise your voice mama bears
Raise them loud and be bold
For change only comes
When we don’t do what we’re told.

just keep livin.

When He Outgrew Cute

When he outgrew cute
The looks changed from compassion to concerned
Towards him
And towards those who supported him.
And sometimes disgust
Overshadowed concern
As he stubbornly clung to his ways.

When he outgrew cute
The calls increased
Calls desperate for help
Desperate for summer options for a fifteen year old in diapers
Desperate for respite
Desperate for adaptive equipment
Desperate for anything that would assist a non verbal man child
Or anyone
And the voices were silent
Or they whispered –
Sorry.
Sorry.
Sorry.

When he outgrew cute
His movements were no longer celebrated
But instead feared
Violent head banging
Aggressive pulling
Dangerous optimism
With the strength of a man
And not that of a child.

When he outgrew cute
The damage began
Damage to walls
Damage to others
And damage to himself
And this damage
Wrecked havoc on more than just objects in his path.
It wrecked havoc on psyches as well.

When he outgrew cute
The walls caved in
And the house became a tomb
And the isolation suffocated those within
As they desperately yearned to belong
To something
Somewhere.

When he outgrew cute
Milestones were no longer encouraged
And his future grew dim
And symptoms of PTSD set in
For those who loved him and had been
Rattled by his screams for years.

When he outgrew cute
Mood altering drugs were doled out like candy
One option after another
For him
And also –
Suggested for his caregivers.
Drugs to dull the pain
Drugs to pacify
Drugs to silence the demons

When he outgrew cute
She outgrew herself
As every ounce of strength was poured into him
And she got lost in the daily grind
Lost in the sleepless nights
And invisible behind the never ending tasks

When he outgrew cute
She outgrew silence
And she raised her voice
To join the cacophony for change
And her battle cry rose –
A better tomorrow!
For him
And for those who loved him.
Because when he outgrew cute
He outgrew society
And that’s simply not an option.
For anyone.
Anymore.

When he outgrew cute
She found the strength to move forward
To move towards advocacy
And move towards hope.
She found the strength
To keep going
And keep growing
And she found the strength
To just keep livin

Just Keep Livin

In our modern age and particularly in our American culture we avoid death; we like to pretend we can somehow outwit the grim reaper – create a magical potion or a pill or a procedure that will enable us to live forever. We’ve stuffed death into quiet convenient corners: hospice, ICU rooms and nursing homes & then we fit the dying into our schedules as they prepare to leave this earth. Not a single one of us gets out of this grand and beautiful thing called life with breath in our lungs. Not a one.

This truth is deeply embedded in my soul after learning that death was imminent for my unborn baby who had suffered a stroke, and after lying beside my 33 year old husband as cancer ravaged his body; a strong man affectionately known as Superman to those closest to him – and Superman died – the suffering of this earth & the beauty of the afterlife so translucent as he communicated with angels & those who’ve gone before.

Death will tap each of us on the shoulder. Maybe we’ll feel the tap, tap, tap from the devastating effects of cancer, or maybe an accident will bring life to a screeching halt, or possibly Covid will be the villain we’ve feared all along or perhaps we’ll be one of the lucky ones who passes away in our sleep – death by old age – but every single day we’re blessed with time, we also move one step closer to the clock striking midnight – with or without a magical potion. And the only way to outsmart death is to live: eating, drinking, folding laundry, sweeping floors & reading bedtime stories, because through movement, our choice to face another day, we honor the life still present in our lungs, and we honor our Creator, and we honor those who’ve already breathed their last.

Just keep livin

I Know.

As a caregiver to a child with intense and profound special needs, I know that my voice is relevant in this space because of my experiences.

I know that I sigh deeply when people who have no experience with autism offer suggestions on behavior modification.

I know that I want to throttle well meaning folks when they say to “hire help” when there is very little help to be hired or the available help comes at a hefty price tag that a family of ten can not easily afford.

I know that I want to scream when people suggest that we “take him with us – he’ll be fine” knowing he won’t be fine and will instead holler “ALL DONE!” until we agree to leave.

I know that it broke my heart as we tried different medications to thwart the aggressive behavior that resulted after the abrupt ending to Luke’s school year.

I know that it drives me bonkers when my experience with Luke is compared to raising a toddler. No, it’s not the same. A two year old kicking and screaming – kind of cute. A fifteen year old violently thrashing and screaming, not so cute.

I know that my heart often races as passive guilt is heaped upon my already heavy shoulders when we decline an invitation because of finances or weariness or just plain lack of giddy up.

I know that the gossip whispered about time spent away from my children – frequent getaways in order to be a somewhat sane mother who is able to do this exhausting endeavor day after day, hurts.

I know that I could weep every time I think about Luke’s future, my future, – fearful of what opportunities or resources await or don’t await us after 18.

I know what it’s like to be a caregiver of a teenage son with profound and complex and difficult needs. I know that my voice matters. My vulnerability matters. My experience matters as I speak into this space.

I hope and pray that my voice will be a part of many voices that will create change that is desperately needed in America.

However –

I do not know what it’s like to be black and so I will quiet my voice, quiet my judgmental thoughts, quiet my preconceived ideas and opinions, and I will listen. I will listen to the voices of wisdom who can teach me. I will listen to their experiences and their stories, and I will learn.

This is know.

To learn more about how you can help caregivers please visit www.thelucasproject.org

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Sunlight Burning at Midnight

Sunlight Burning at Midnight