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
Wreaked 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.

Written by, Jess Ronne

Jess Ronne is an author, speaker, podcast host, and caregiver advocate.  She is founder and executive director of The Lucas Project—a non-profit dedicated to providing recognition, resources, and respite for special needs families. She and her husband Ryan live in Tennessee with their 8 children, including their son Lucas who has profound special needs. Her story of beauty from ashes has been shared on The Today Show, Daily Mail and Huffington Post and is detailed in her memoir Sunlight Burning at Midnight.  To follow the ongoing saga she can be found at www.jessplusthemess.com or www.thelucasproject.org

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