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